Pray for Jared

Events from September to March

2011-03-23T04:49:00.000-07:00

The last two posts were updates from my BBC group. I started writing them here but never finished and published them.

I found out some time in September that Jared would be on a waiting list for the AAPD program. I also found out that if he were in a nursing home he would not have to wait. He would have to be in a nursing home for 30 days for the AAPD program to kick in.

I discussed this with Jared's family and we all agreed this was the best option to get more help, fast.

When Jared weaned off Dilantin he improved. With that improvement it was even more difficult to care for Jared on my own. He was falling out of bed, getting more aggressive, and getting into to more things (like eating sidewalk chalk).

All of this took a toll on me. Since the accident my sleep schedule was nearly non existent. I was always tired but never able to sleep more than a few hours at a time. I was a nervous wreck worrying about everything that could go wrong, and had gone wrong.

Financially things were coming to a head. I was barely making it with bills, food, and gas. If I needed something like a new tire or a new appliance I was going to be up creek.

I thought the break would be nice. It would be a good trial if I ever had to admit Jared for long term care in the future.

I had a big problem finding a nursing home that would even consider admitting Jared. Out of the five local nursing homes only one agreed to admit him. Most of them claimed they geriatric patients and Jared would have no one to socialize with. Obviously. Eventually I told them that there wasn't a place full of young disabled people, even if there had been it wouldn't be close to home so his family could visit. Having family and friends visit was much more important to me than having him in a facility with people his own age.

Jared did well with his transition to the nursing home. I packed up and went to stay with my mom over two hours away. I sent Tyson to stay with Jared's mom right before I admitted Jared. There were a few more incidents of Jared being aggressive towards Tyson. I couldn't handle it anymore and I asked her to come and get him until Jared was settled.

I swear I slept for a month. I was so insanely exhausted. I didn't even know I was that tired, I honestly had more energy after giving birth to either of my children!

Tyson stayed with his grandmother until the week before Christmas. I spent time with Catlin, resting, regrouping, and making plans for what would happen next.

Jared had done so well in the nursing home his family requested that I leave him there for now. I agreed. He was happy and gaining weight. His family could come and see him anytime they wanted. He became more social talking with the staff every day rather than just tired and worn out me. He seemed happier all around, less stressed. He had a team of people working for him everyday. More consistency that I could have ever hoped to give him. He had nurses and doctors available to him in the event something went wrong.

I can not tell you how much stress it caused me knowing I was responsible if anything went wrong with Jared. I was so scared he would fall... again..., or choke...again,...maybe a blockage or something. I nearly worried myself to death.

Jared was so happy when I came to see him. He was so loving and happy every time I walked through the door. There was no more fighting with him or having him hurt me and the kids. I could enjoy my time with him rather than being stressed and over worked.

It was hard. At first I felt as if I had failed. I simply wasn't good enough to do it all. I felt like people would think I was going to abandon him. I rented my house and moved in with my mother. She had room and there wasn't much sense in wasting money trying to live on my own when I clearly was emotionally stable for that. Some days I thought I could stay in bed forever.

By Christmas I was missing Jared terribly. I had gone to visit him and picked him up for doctors appointments. But I missed waking up next to him, watching Tv with him, cooking meals for my family, and laughing at the little things.

I wanted to miss him. I needed to miss him. I needed something to put me back on track so I could truly appreciate my time with Jared.

I planed to bring him home for ten days during Christmas. The first weekend we went to his Mother's to celebrate Christmas and Jared's birthday (December 19th). I stayed there a week with his whole family. This was his first real holiday with all of his family, we were all thrilled.

Tyson came home with us, for good, that was his last extended stay at grandma's house. It was time for me to move on and live life as a dedicated mom. I had helped Jaerd as much as I possibly could, I gave it everything I had. I felt good knowing I reached a limit with Jared and that it was ok to want some normalcy in my life. Everyone was happy and healthy and that was my original goal.

Jared stayed with me and my family through Christmas. It was stressful and wonderful. I took Jared to a Doctor's appointment on his way back to the nursing home.

Since then I try to bring Jared home for one weekend a month. Sometimes I visit him between, usually he has a doctors appointment or something to go to. I still have family in our home town and see him when I drive in for various things.

Currently we are trying to move Jared. Jared's brother moved this month and his mother and I agreed we needed to move him closer to one of us. At first I asked to move him near me but his mother decided she wanted him closer to her.

I have struggled with this decision for the last few months. If he moves closer to his mother, two hours in the other direction, she will have to be responsible for doctors appointments and such. She wants to do it. She thinks it will be hard for me to continue on the way I have considering the children.

I really want Jared to be available to me and the kids. We all still love each other very much and I want to continue our little family as it is. I want the children to grow up knowing their daddy and I really like my goofy husband with all of his quirks.

Realistically it's better for him to be close to his mother. Eventually I will have to work or go to school, I won't always have a flexible schedule. Here with me he only has me and the kids, there he would have his mother, step father, and younger brother. It would also make it easier for his father considering he could visit two sons at the same time.

His mother agreed to drive Jared half way anytime I wanted to spend a weekend with him. She also plans to have the kids visit her, and Jared, during the summer or spring breaks.

I'm not sure how all this will work out. Still I'm trying to make the best choices for everyone.

One of those days (delayed update)

2011-03-23T03:44:00.000-07:00

I'm still alive lol!

Today was a rough start. Last night Tyson got up screaming and then didn't want to go back to sleep. I was less than trilled to start my day when I opened his bedroom door.

He was covered in pink slime. He found a can of Catlin's play slime and "washed" his hair with it. Awesome.
It was all over the floor and it was a PITA to get up. Ty is always starving when he wakes up so by this point he was screeching at the fridge and jumping like a monkey.

As I tried to find him something quick to eat Jared started yelling from the bedroom for Kesha, telling her that he was hungry.

Tyson got half of my morning soda and a peice of cheese to pasify him until I could get Jared out of bed.

Today we got food stamps so our kitchen doesn't have much of a selection.

I got them fed, they ate PB&J for breakfast. I hate feeding them crap but we didn't have much to choose from and it's not like they would have given me time to make something nice anyway.

After Tyson ate we jumped in the tub so I could try to get the slime out of his hair. Jared was still eating and started banging his cup on the table while I was washing the slime out of Ty's hair. I tried yelling to him and explaning why I couldn't come in there, eventually I gave up and listened to him bang and yell.

His cup was empty and he wanted more water.

After the bath I called a family member to see if Jared could hang out for a while so I could run some errands. Everyone had plans for the day so the whole maybe tomorrow junk.

I was a little miffed so I decided to continue my plans, with Jared and Ty in tow.

I went through the process of getting everyone cleaned and dressed. I had to pack the universal diaper bag and gather all the paper work, checks, and whatever else I needed to take with me.
I had to make several phone calls so I talked on the phone for a while after I got everyone loaded up. I swear it's so hard to talk on the phone and take care of business when Ty and Jared are getting into things and yelling. With them strapped in the car they were safe and quiet.

When we pulled out of the drive Jared claimed hungry again so I got him and Ty a fish plate to share while we were in the car. At this point I still hadn't eaten anything so I settled for a few fries.

We went to the DHS office to turn in the application for AAPD. When I got there I realized that I left the completed app. at home. I didn't feel like fighting lunch traffic so I just picked up another one and filled it out in the car while feeding the boys.

I went to the Social Security office again to ask about Medicare. They keep telling me I can't apply until Jared has been on disability for 2 years. My mother in law refuses to believe it so I went back just to have them tell me the same thing, again, and my mother in law still dosen't believe it.

I needed to make another phone call so I stopped back by the house to look up the number on the way to Wal-Mart. I called the mental health center and asked them to give me a Rx to help me sleep. I'm tired and I just can't sleep. They had to call me back, they never did.

So then we all went to Wal-Mart to by food. I have to say by far it was the worst trip ever.

Tyson starting trying to get down from Jared's lap so wound up having to put him in the cart. With Tyson in the cart he kept pulling stuff off the shelf and putting it into he cart. When I turned around to get on to him and put the item back Jared would start grabbing things off the shelf that he wanted. Each time I stopped to get something, so did they, and we repeated the process of putting everything back. Eventually Tyson started trying to open stuff so I had to take him out of the cart. I let him push Jared's chair to keep him occupied. When I stopped to get something Ty would take off with Jared down the aisle and I would have to run and catch them. I wound up putting Ty in Jared's lap again only to have him throw a fit to get down. Jared got mad because Ty was being loud and then he went into his own fit of yelling and swearing.

At this point I was stuck. I wasn't really sure what to do so I put Ty on my shoulders and continues pushing Jared and pulling the cart, shopping along the way.

This worked fine until we got to the produce. Jared was reaching for fruit and Ty was yelling "nanna nanna nanna" and poking me in the eyes. He was trying to get down so he was just straddleing one shoulder and hanging on to my hair like a spider monkey.

The people in the store were staring at me, not sure if they should feel sorry for me or laugh as I take turns telling Jared not to eat the fruit and telling Ty to stop pokeing me in the eye.

Then Ty started putting his fingers in my mouth, I couldn't talk because he was pulling back on my cheeks.

Well, at this point I'm ready to fall out in the floor laughing or crying so I grabbed the last few thing we couldn't live without and went to checkout.

While I was putting all the food on the belt Jared took off in his wheelchair. I wound up having to hold onto Jared with one hand and unload the cart with the other.
The girl behind the register lost her composure and asked how old Ty was. I laughed and said 2 and she hurried things up.

I got the boys, the food, and the wheelchiar in the car and headed home. I unloaded the food, wheelchair, and the boys and went inside. Ty was screaming wanting food, Jared was yelling that he was hungry again so I had to stop and make another set of PB&Js for them.

I take a bite of each for my second meal of the day.

As I start to put up the food I realize Ty must have dumped out my seasonings on the floor while I was getting dressed. I couldn't stand the grit on my feet so I stopped and cleaned it up.

Before I finished putting everything up I stepped on a blob of jelly, again I had to stop and clean that. I still haven't finished putting up the canned foods or boxed food.

My mother in law called at some point to talk about the information I got from the phone calls today. I stepped outside to let Ty play in the yard so I could talk. When we hung up I walked in see what Jared was yelling back and set down my phone. I went back outside to get Ty out of the tree and when I went to go inside I was locked out.

I had moved the lock (like hotels have with the flippy thingy) up high because Ty had locked me out, and thankfully was smart enough to let me back in. I guess when I moved it up higher I didn't do something right so it wound up locking when I shut the door. I had no phone and I couldn't get it unlached because you have to close the door to do it. I gave up trying to figure it out and kicked the door open. It took a few hits because I wasn't wearing shoes.

I tried to relax on the couch for a bit after that but Jared kept calling Kesha over for no peticular reason. Tyson wouldn't stop climbing on me wanting to play. I was so fustrated at that point I was in tears.

It had been a hard day and it wasn't even close to over.

I set Jared up in the recliner thinking he would pass out if he watched TV for a while. I stuck Ty in bed and prayed that he would nap just for a little while. It was too late for a nap at 5:30 put I needed a break.

I went to my room and tried to cry. I couldn't so I settled for a nap.

I woke up around 7 in a panic, Ty was crying ready to get up. When I first wake up I panic because I'm not sure how long I've been asleep. I checked on Jared, all was good so I started thinking about dinner.
I decided to go the quick and easy route because the boys were starving again. I made pork chops, green beans, and mac 'n cheese. We ate and I put Ty back to bed at 9 so I could clean up and wash dishes.
I baked cookies and muffins while I washed dishes and cleaned the kitchen. I cleaned out the fridge before I put the food up so I had a lot of stuff to wash. Jared called Kesha repeatedly and told her he wanted cookies and candy.

Finally we were able to sit and eat warm cookies with milk. When we were finished I gave Jared a bath.
I guess he got mad because he was cold and bit me on the top of my head when I was trying to put him in bed. We talked about why he was mad and I let him calm down. Finally I got everyone to sleep so I could have a little me time.

Ugh, what a day. This is for those of you who wanted to know what a day at our house looks like. They aren't always this crazy but it happens often enough.

I swear if Janet Enovich wrote a book about Joe Morelli getting brain damage and Stephanie Plum was his caretaker she could get her insperation from us.

August 29th (delayed update)

2011-03-23T03:21:00.000-07:00

The past few weeks have been, interesting, to say the least.

Sunday 8/29/10

We were going to Jared's grandmother's for her birthday lunch. I knew we had a long tiring day ahead of us so I decided we would stay in bed watching TV until it was time to get ready. Breakfast in bed is never a bad thing, well, that's what I was telling myself at the time.

I was sitting at the computer, Jared was laying in bed watching TV, and Tyson was running all over the place doing what Tyson's do. He loves to climb up the foot board of my bed and then jump around.

I heard the tink sound of something going into Jared's mouth. Tyson is always taking little toys to Jared and if he doesn't stick them in his own mouth Tyson does.

When I walked over to see exactly what was going on I saw a penny resting on the back of Jared's tongue. I wanted to reach in and grab it but Jared bites, I knew that wasn't going to go well so I quickly wracked my brain for ideas. Ultimately I decided to roll him over and let it drop out, no, he's too close to the edge of the bed, he will fall. Then I decided to sit him up, leaning him all the way forward should to the trick right?

Ummm, no. He swallowed just as I was sitting him up. Crap.

I knew it wasn't a big deal to swallow a coin, kids do it all the time, right? I called Jared's mother, yes she would know what to do. She laughs a little and tells me it should be ok, and defers to her husband who once upon a time was an Army nurse.

I reminded them that Jared has bowel issues and tell them that I don't know if his slow moving bowel can pass the coin. Well at least not in a reasonable amount of time anyway.

I consulted the BBC moms for validation before disturbing the on call doctor.

The doctor on call must have thought I was a nut job. It is so hard to explain Jared's condition to a new person or doctor. After asking me a ton of questions, is he breathing ok, can he pass gas, ect. he told me everything should be fine with a hint of "Why did you call me??" in his voice.

We enjoyed the rest of our day as planned.

Monday 8/30/10

I had an appointment with a phycologist to get some medication to help me sleep. I missed my last apointment and had to reschedule so I was really looking forward to this vist. I've been sleep deprived for far too long.

I always make plans to have Jared's aide sit with him and I get a family member to take the kids when I have apointments for just me.

Jared's grandmother picked Tyson up around lunch time and I started getting ready to go to my apointment. I try to make myself look put together when I go to therapy and I wanted to make the same effort for the phycologist. God forbid I look slightly askew and be slapped with a crazy lable.

I take my time and straighten up the house a bit as I wait for the aide. Jared is hanging out in his PJs, he normally does when we have no where to go.

2pm rolls around and the aide dosen't come. My apointment isn't until 2:15 and she knows that, maybe she's running a bit late.

2:10 comes and I pick up the phone to call the home health office. While I was looking up the number I realized that they were probably not going to be able to solve anything within the next 5 minutes so I dropped the phone and raced to dress Jared.

It would take much longer than 5 minutes to find a family member to sit with Jared. The mental health clinic has a $25 no show fee and I couldn't afford to miss the apointment or have to reschedule it and miss another week's worth of sleep.

I slapped clothes on Jared and was unloading him at the clinic at 2:22. I am Super Woman!

I think it freaked the woman at the desk out when I raced Jared up to the counter, half out of breath, and explained that I was running late.

I swear me and Jared would have started a riot in the mental health clinic if she rejected me or made me reschedule.

She didn't and I was able to see the doctor.

I aplogized to the doctor after introducing Jared and explain I had intended to come alone. He spent the next 30 minutes explaining to me that he wasn't quite sure what my official diagnois was but that he was going to give me a medication that should help with the symptoms I was experienceing. We talked about dosage and how often I should take it, he wrote me a prescription and we went on our way.

I decided to go to Wal-Mart to fill the prescription so that I could refill it anywhere if I have to travel. We need some groceries and I had to cash a check. I dropped the prescription off with my new medicaid card. I wasn't sure if it was going to cover prescription costs because I had just gotten it and it isn't part of the standard medicaid program.

We shopped and enjoyed being out of the house for a bit. I pushed Jared with one hand and pulled the cart with one hand behind us. We chatted with a woman whose son had a spinal chord injury. I think she may have thought Jared had an SCI at first. Her son was around the same age as Jared and I think her heart stung with a familiar pain when she saw us. I expained Jared's injuries and she gave me her information. She left us with an open invitation to visit and telling us that her home was fully handicap acessiable.

Our last stop was the pharmacy. When the lady pulled my perscription up she said "You do know this is $527.00 don't you?". Ummmm, no my insurance didn't pay for it? "No.", "Well then I need to make some phone calls and come back.".

I called the clinic as I loaded Jared into the car. They were going to close in 15 minutes and they weren't able to help me that day. She asked me to call back the next day.

I was crushed. I needed a full night's sleep so bad. I had bee so excited to finally get some help. My heart sank deeper knowing even if they gave me a cheaper prescription I wouldn't be able to afford it if my insurance didn't cover it.

Tuesday 8/31/10

I woke up and waited until late morning to call the nurse back and ask her what could be done about the prescription. She told me that she had simply forgotten to ask the doctor and told me to call back the following day. I asked her if there was finacial aide for people that couldn't afford medication and what I had to do to apply for help. She told me that I could apply, I needed proof of income and a statement from my insurance provider stateing that it would no cover prescriptions.

Fine. I hung up and called the local DHS office. They told me that my medicaid "spend down" should cover the medication. At this point I was so fustrated I spilled all my government assistance woes to the lady on the phone. She wound up giving me the number of a man in another county that could possibly help me with a program called AAPD.

I spent the rest of the day digging up infomation about the AAPD program. Eventually I connected with a lady that took our information and told me that Jared should be eligiable. She said she was sending me an application in the mail and that I needed to fill it out and turn it in at our local office.

That evening I sat at my computer to send and email. Tyson swarms me like a tiny shark and plays with whatever is in a 10 foot radius of me. Usually our time in the bedroom consists of him climbing up the foot of my bed, and jumping at the foot of the bed. After about what seems like 3 seconds he climbs down and repeats the process. I watch him in the mirror of my desk/vanity.

The moment I realized he had slipped past me and down the hall was the moment I heard a discusting thud in the living room.

As I ran into the living room I ran into Tyson who was running to me. The shock was wearing off and now he was scared.

Jared's lift chair was up and I knew instantly what had happened.

One of them was playing with the remote, the chair lifted, and Jared fell onto the floor.

As I rounded the chair I was proud to see Jared sitting up with his back against the couch. He was holding his butt off the ground with his right hand. His eyes were wide with a paniced expression, I felt horrible.

This is the process in which I deal with Jared falls:

Ask if he is ok, he nodds yes so far.
I ask him if anything feels broken as I visually acess his damage.
I pull the wheelchair over and get it ready for a transfer, depending on the location of the fall.
If Jared isn't wearing shoes I might decide to put shoes on him for better traction. This depends largely on the location of the fall and injuries.
I place his right arm around my shoulders with my left arm under his left arm. I lift and drag him into the wheelchair.
I imediately turn into the paniced annoying wife that asks a million questions. I ask him if he hit his head first and then we move down the body talking about any injuries he may have acuired along the way.
Call Nicole.

Nicole is one of my best friends. She's an RN and she has been here since day one answering all my questions. She will tell me what she thinks and knows, she will tell me if she dosen't know, and she's willinging to look at any picture I text her. She honest, blunt, and she dosen't cry.

Jared hit his head on the table when he fell. He had a slanted cut across his forehead and it was bleeding. I questioned Nicole about it, texted her a picture, and we both decided it was minor. I patched him up with antibacterial ointment and a band-aid.

Next I had to call and report the fall to my mother in law. She was upset and wanter to send her sister (a nurse) over to check on him. I declined and told her I called Nicole and sent her a picture.

(Please forgive me, I'm finishing an update that I didn't finish several months ago. I don't remember all the details.)

Wednesday 9/1/10

I called my sister to come get Ty because I had an all day doctor's apt. with Jared the next day. I thought it was going to be awesome to have a semi relaxing evening at home with no kids.

WRONG!

We took a late nap so we had a late dinner. I gave Jared an apple to snack on before bed and he got choked on it a little. It wasn't really a big deal, he was coughing on his own, I wound up taking what was left of the apple in his mouth out so that he could cough easier. He settled down after a few minutes so I thought everything was ok.

About a half hour later, by then it's after 11pm, I roll Jared into the bathroom for a quick shave before we go to bed. We had an early day the next day so I thought I would get it out of the way.

He starts coughing when I ask him to hold his chin up so I can shave his neck. It sounded terrible like he needed to get something up and he couldn't. I leaned him all the way forward thinking it would help him cough whatever it was up. Mucus started running out of his mouth and I leaned him back to clean him up.

That's when I saw it.

The apple. It was a huge peice of apple and it had been stuck in his throat this whole time! When I took it out of his mouth I saw that it had a little blood on it.

I freaked out. I made sure that he was breatheing ok and rushed to get the phone book and the phone. I called the ER and told the nurse what had happened and asked her if I needed to bring him in. She said he was probably ok but I needed to watch him just in case. She told me to bring him in if I wanted to, or if it would make me feel better.

As I'm haning up the phone I hear a crash in the bathroom.

I ran in to see Jared laying in the floor. I don't know why but he fell out of his wheelchair and crashed into the toliet and landed on the hard tile floor.

I scooped him up and put him in the chair and checked him out. He said his side hurt and he had some scrapes on his knee. There was a red mark on his hip but he said nothing felt broken.
I decided to take him to the ER even though I knew he was ok. I just couldn't imagine telling anyone this story and ending it with "No, I didn't take him to the ER.".

I had to get both of us dressed and pack a bag with diapers, wipes, medical information, ect. and off we went.

The lady that checked us in asked if the gash on his head was from the fall from tonight, I told her no and that was Tuesday's fall.

We went to sit and wait. I looked at Jared all banged up and realized it must look like I beat him. I called another friend and told him if I went missing it was because they put me in jail for beating Jared.
Jared started making the poop face. I rushed him to the potty and he took a nice poop. I wanted to cry because I NEEDED that poop to look for the penny.

We went to have his vitals taken before they took him back to his ER room. His temp was 94. The nurse said that couldn't be right and retook his temp probably 15 times. I told her that his temp was always low because he was dependant and brain damaged. She said even so that's way too low.

She got us warm blankets and we waited for the doc.

Thankfully I knew the doctor. She is married to the minister that married me and Jared almost 3 years ago. She knew me well enough to know I didn't beat Jared. She agreed to order a chest x-ray just to ease my mind. She said if he aspirated any of the apples we wouldn't know for a week or so. She said he would get a fever and a respitory infection.

The x-ray showed nothing but the BB that was embeded in Jared's chest from when he was a kid. She was concerned because she thought one of the kids had fed Jared something metal (I told her I was still looking for the penny).

Jared spent the whole time telling me that he was hungry and he wanted to eat cold soup and bread. When I didn't produce cold soup he started calling for Kesha.
So everything turned out just fine. Well so far anyway. We got home and Jared had his cold soup, we finally got in bed at 3:30am.

* This is a delayed post. I wrote It back in early September and never published it. I wanted to finish it because I felt it was important to show just how hard it is sometimes. It also contained information that leads up to the current update.

I hope you bet on me!

2010-08-21T22:52:00.000-07:00

I spoke with the neurologist on August 5th. He walked in and asked Jared how he was doing without waiting for a response.

Thinking back I realized the last time they saw Jared his Dilantin levels had been extremely high and he was lethargic. The seizure specialist called me after that appointment and changed the dose. Follow up blood work done at the local clinic revealed everything was normal a few weeks later. They had never seen Jared when he wasn't lethargic.

So when Jared mumbled "I'm good how are you?" I interrupted the doctor and translated his response. I think that threw the doctor off because he was silent for sever seconds before saying "okay".

I told him Jared had been doing well, no seizure activity, and that I wanted to take him off Dilantin. I went on to explain that I thought the drug was effecting Jared in negative ways and that he would function much better without it. I told him that I thought Jared was suffering from Nystagmus and that Dilantin was making it worse.

He told me that we could take him off Dilantin to respect my wishes. He warned me of the risk of seizures and we agreed that we would return if I suspected he was having any.

The doctor tried to look into Jared eyes and see the rapid movements when he focused. I tried to explain that it only happened when he was tired and Jared wasn't tired.

It's frustrating to deal with the doctors. They expect Jared to hold his eyes open as they blind him with lights and poke around his face. I know they need to do those things to help him, but they should understand you have to do things a bit differently with someone as disabled as Jared. Even more they should know that every TBI is different and the possibilities are endless. Jared (or anyone with TBI) will never fit into that round hole of text book symptoms and diagnoses.

In the end I got what I wanted. The doctors didn't side with me completely but were willing to admit I could possibly be right.

They want a CT of Jared's head because he's had some headaches and they want to make sure he hasn't had any changes with his shunt or ICP. They suggested several medications to help with the headaches, one of them was yet another seizure medication. I declined I told them I wanted to see Jared unmediated for a while. We agreed.

August 18th we returned to the VA to have Jared's Baclofen pump refilled. Jared had an aggressive episode as he was getting out of the car. I was actually happy Jared's brother was there to witness the event, until then no one could understand what I had been telling them.

I told the doctor Jared was still complaining of lower back pain and he had localized it to the area where the catheter enters his spine. I asked the doctor if we could check things out with a CT or MRI. He told me we could order a CT because the MRI would mess with the pump. Even though I told him he had an MRI since the pump was placed he still wanted the CT.

This doctor ordered a spine X-ray to locate the catheter and pump so he could order the correct CT scans.

Later all hell broke loose in X-ray.

The tech came out and got Jared and told me they would be back in a few minutes. I told her Jared had some communication issues and I wanted to go with them, she agreed.

We had to move Jared to the X-ray table, I did the transfer with no problems. She needed Jared to hold his arms this way and hold his head that way. I showed Jared what to do because he was a bit confused. Things were great until she needed him to lay on his side.

I rolled Jared over onto his left side thinking he could steady himself with the right arm. Jared instantly flipped out and started hitting me. He grabbed my hand and bit me hard. I kept asking Jared "What's wrong?" and he moaned "My hip!".

His hip was digging into the hard table and it was hurting him. I rolled him to his back and asked the tech for a sheet or towel. She grabbed one out of the cabinet and handed it to me. This was the first time I had looked at her and I could see she was a bit freaked out.

We rolled Jared onto his other side and he was tolerant with the towel under him. The tech told me "Thank you for helping, you're so good with him." I laughed and responded "Now you understand his communication issues.".

I was a little shaken as I wheeled Jared out to the lobby. Jared's brother was waiting on us and I told him what had happened. I held up my hand to show his brother and saw it for the first time. I had a perfect bite mark on the back of my hand. I didn't realize it had been that bad. It was starting to swell and turn red. As we walked to the car sweat stung a cut where Jared's eye tooth had broken the skin.

I drove home a little heart broken realizing Jared was becoming more dangerous as he recovered.

Taking bets...

2010-08-04T00:01:00.000-07:00

Ha! I have been trying to describe this for months now and I finally figured it all out! I was surfing the web for something to win the Dilantin battle with the neurologist on Thursday.

You aren't going to believe this.

I think Jared had (pendular) nystagmus which was mistaken for focal seizures. Nytagmus is really hard for me to describe and I don't understand it completely, yet.

Basically Nystagmus describes an involuntary (rapid) movement of the eye. It can be more pronounced when the person is tired. People are born with it and people can acquire it (think traumatic brain injury). Nystagmus is broken down into many different sub categories so I'll just describe why I think Jared has it.

Involuntary rapid horizontal rapid eye movement, more pronounced when he is tired.
It can be caused by brain stem damage, Jared has brain stem damage.
Sensitivity to light and sound.
It's linked to dysfunction in the inner ear. Didn't I post about Jared's left ear last post?
Link to aproxia. Think about Jared's left side and the spasms ect.
Eyes pull to or from (don't remember which) the more damaged hemisphere of the brain. Think about the deviation of the eyes that lead to the seizure diagnosis. The right side of Jared's brain suffered more damage.
Vision problems. From what I read this describes his vision issues very well, I won't write all the details.
Issues with balance.
Holding the head to one side.
Dilantin can amplify all of the above symptoms.

I'll stop now, you get the point. I could go on and on with all the details that perfectly match what I see in Jared.

Here are the symptoms that led to the seizure diagnosis.

Eye deviation.
Unresponsive for 30 seconds up to two minutes.

The neurologist even agreed (as well as the other doctors) that Jared's symptoms aren't typical of seizures but it seemed to be the best fitting thing to describe what was happening to Jared. Jared wasn't tired or disoriented after the "episodes" he was having. I can write the unresponsiveness to a delays caused by brain damage. It really isn't that unusual for Jared to be unresponsive, especially when he is tired.

It seems so obvious to me! Why hasn't anyone picked up on this?? I REALLY hope I can get this neurologist to listen to me.

But how do you tell a seizure specialist his diagnosis is wrong when you are me?

The reality of nightmares.

2010-07-25T19:46:00.000-07:00

I woke up to Jared starring blankly at the ceiling. The look on his face seemed to say "How long before this woman wakes up and gets me out of bed?". On the average day I have to drag Jared out of the bed and force him into life, not today.

When I approached Jared's side of the bed I saw a man I used to know. He was bight eyed and fully awake, ready to jump into life. Jared doesn't usually talk in the mornings and especially not laying down, this morning he was rather chatty.

I dressed him, helped him out of bed, and asked him what he wanted for breakfast. He gave me the usual shoulder shrug and mumbled "ice cream". I smiled at his response as I rolled him down the hall to start breakfast.

Tyson woke up as we passed the door to his room and we all went to the kitchen to make something to eat. Catlin had slept over at my parent's house the night before so it was just the three of us.

Tyson being his usual self was desperately trying to get the eggs off the counter, casually I told him I was going to make him eggs and to sit at the table. Jared chimed in and said he wanted eggs too.

For a while things continued to be eerily "normal".

Tyson cried when I took a roll of wrapping paper from him that had been left on the counter. Jared started so sweetly call Tyson's name like he wanted to comfort him. Jared said "Tyson...come over here boy..." so I picked Tyson up, still crying and sat him in front of Jared on the table.

It always hurts me to see Jared's efforts go unnoticed. I guess because he doesn't usually talk Tyson is oblivious to it when he does.

As I stepped away from the table Tyson cried a little louder and Jared snapped.

Jared started screaming for Tyson to shut up and then grabbed is face and pushed him over backwards. A cup of water flew off the table, spilling everywhere as I tried to wrestle my son away from my husband. I finally pulled his hand off of Tyson's face only to have him snatch up Tyson's arm, screaming "Shut up" and "Quit crying!" the entire time.

I was in tears holding Tyson when I started in on Jared. I spent a few minutes trying not to scream at him as I explained that it was not okay to treat other people that way. I told him that he couldn't do these things to the children or he would have to leave and live in a nursing home.

I read somewhere that people with brain injuries don't have emotional responses like they should. The article said that we (caretakers) should model appropriate responses at the correct times to help the brain injured person "remember" which ones to have when.

My correct emotional response was apparently hysterical terror.

I thought a lot about how I should deal with Jared's violent outburst these last few weeks. Knowing Jared can make new memories if the memory is significant I decided to allow my raw emotion show. I thought maybe if he saw how upset I became he would remember.

I don't know what else to do.

Jared stared at me with a confused look as I had my break down. When I realized he had no idea what was going on and that he didn't remember what he had done just moments before I gave it up and finished cooking breakfast.

When Tyson finished eating I took him outside to play for a few minutes so I could call Jared's mom and tell her what had happened. I left Jared sitting at the table to finish eating.I didn't expect his mother to help me in anyway, I just needed someone to know what was going on.

After the call I went inside only to find that the dog had snuck onto the table and licked Jared's plate clean. If anyone deserved an outburst it was the dog. Jared apparently sat there and watched her eat it.

I've been trying to figure out what Jared's triggers are. I know that pain is the biggest trigger for his violent episodes. I think he may also be sensitive to noise. He has been upset with me several times for talking to loud to close to his ear. Today I asked him if loud noises hurt his ears and he said "yes". Trough a series of questions I found out that loud noise only hurts his left hear. Maybe Tyson crying on the other side of the room didn't hurt his ear? Maybe when Ty got closer and the crying was louder it started to hurt?

I'm clueless. I plan to call the doctor tomorrow.

I've had nightmares about days like today. I know that I can't keep Jared here if he hurts the kids. This is the only thing I can't fix, control, or adapt to. The risk is too high.

I never let myself believe he could hurt a child. I thought children would be different knowing how much he loved them, he always has. I wanted to believe Jared would only lash out at me because I'm the one that made him do all the things he didn't want to, I guess I was wrong.

What now?

2010-07-19T20:50:00.000-07:00

Hope is dwindling and frustration levels are at an all time high. Curiously this has nothing to do with Jared himself.

A few days ago I was sitting in the neurology pain clinic waiting to have Jared's Baclofen pump refilled when I picked up "Neurology Now" magazine. I began to read an article, "Walk This Way" by Amy Paturel, M.S., M.P.H., the article was focused on gait disturbances after stroke. Jared relates to stroke victims very well considering he suffers from paralysis on the left side of his body.

I read about Dr. Richard Macko's exercise training study at the Maryland Exercise and Robotics Center of Excellence in the Baltimore VA Medical Center. According to the article, and the study, consistent repetitive motion of walking on a treadmill can help the brain "rewire" itself and develop new connections to compensate for the damaged ones.

Suddenly I became excited. I knew that doing the motions could potentially help Jared relearn how to use his body again, I had never seen a study with an actual program. I began to think about how to do this with Jared at home and started my research. Dr. Macko is a VA doctor so I looked up his email and wrote him explaining Jared's condition. The study he did wasn't for just stroke victims, it also included Parkinson's, incomplete spinal chord injury, and traumatic brain injury. I looked up the study he did and saw Jared met the criteria to participate in the study or program. When I wrote Dr. Macko I explained Jared's condition and asked him if he could help me get him into a similar program. I also asked if he couldn't then maybe he could send me some guidelines to do it myself.

I don't know if I will receive a response from Dr. Macko, I'm only hoping he believes in his work enough to help Jared. I hope that he jumps at the opportunity to have a Diffuse Axonal Injury case study subject.

I don't know if I have a right to demand Jared be placed in such a program. I need to call some people at the local VA and see what Jared's rights are for medical care. I want to call Dr. Mac from Richmond and ask him if he knows about the study and program, I'm pretty sure he may know of Dr. Macko.

Today horror struck again as I opened Jared's disability check. His benefits are being garnished for unpaid co payments at the VA. We struggled before, now I'm not sure if I have enough money to keep Jared here at home. I hope that I can get Jared into a inpatient rehabilitation program for a few months so I can work. I need to pay off the debts that are garnishing our checks so that we will have enough money to survive. If all efforts fail I may have to place Jared into a "Nursing home" so that I can work.

Again I have to choose.

I hate this. I am sick. Anxiety had gotten so bad for me just thinking about things like this send me into a hacking, dry heaving, puking, fit. I can't eat and I can't sleep. I can barely speak of things like this before bursting into tears.

I don't know what to do. I have a problem and it isn't Jared. The world around Jared is collapsing and I can't seem to hold it up.

I asked myself today if I was being selfish. Does it really matter if Jared is here living with me? It seems like I am the one who wants and needs him here. It's me that doesn't want to bear the guilt of letting him go some where else.

Is quantity better than quality? Would it be better if I relieved myself of these burdens and just enjoyed Jared on the weekend? I can't imagine I'm terribly enjoyable on a daily basis. I do get frustrated and snap at the kids, I don't spend as much one on one time with anyone because I'm stretched so thin trying to do everything on my own.

I have good intentions to help Jared recover. I set up his gym membership and we had good results when we were able to go and work out. The problem is that I don't have a baby sitter for my kids, I can't take them with me.

Is there a facility out there that can work with Jared more consistently than I can? Would it help him?

Today I sat and thought for a bit. Mentally I asked myself why I'm doing all of this? After much thought I decided it was because I missed Jared. As time passes and he recovers I get a little glimpse of the Jared he used to be. I loved that man so much. So many people lose loved ones, I know they think "If I could just see them one last time.", I keep wishing to see him one more time.

For the past few weeks Jared has become more aggressive and violent a times. He keeps having episodes and kicks, bites, punches, and swears at me. The angry episodes only last for seconds and sometimes a minute or two. Jared calms down as soon as I can get him to talk to me. He tells me what is wrong and then we talk it out. I'm trying to avoid the whole violence thing and just use words. He always agrees with me that hurting me is bad. He says he doesn't want to hurt me but when he gets angry all that goes out the window. Just moments after his last violent outburst he looked at me, and asked "What's wrong?". I was sitting on the bed crying after he punched me several times, he had no memory of the incident.

Aggressiveness and violent behavior are common after head injury. I've been told this a thousand times, no one told me what to do in the event that it does happen. The only solution anyone has offered me is medication. I won't allow it. Jared had a hard enough time staying awake as it is, I don't even want to know what those drugs will do to him.

After a bit of research on Dilantin (anticonvulsant medication) I found out that it can cause behavior changes. I'm hoping we can blame it all on the medication and take him off of it and solving all of our problems.

It might be a fat chance but I'll take it.

I don't believe Jared ever had a seizure condition and I think the medicine is making him more tired than he would be with out it. I've noticed Jared is more awake, aware, and better functioning in general before taking his dose of Dilantin. I want to see what he is like off of it completely. Hopefully the neurologist will agree with me on August 5th at his next appointment.

Just a few pictures.

2010-07-07T00:38:00.000-07:00

Jared in therapy.
This woman changed his life forever, I will always have a place in my heart for her.
I miss her so much.

My first time seeing Jared walk.

Flying home from Richmond.

Finally sleeping in his own bed!
Memorial Day weekend at Crystal Springs.

Us.

Jared and Tyson hanging out.

Jared being a man.

Jared being a dad.

Home

2010-07-05T21:57:00.000-07:00

I know now that home isn't a place, it's a feeling. Home is the sigh of relief when you walk through the door. It's having your family with you and not worrying about where or how they are. Home is the ability to be lost in mindless tasks as you sift though all the thoughts in your head.

Home.

I wasn't truly home until Jared was here, for good. It feels wonderful. I no longer have second hand news from a tired nurse, I know exactly how Jared's day was. I know what and how much he ate and weather or not he liked it. I was there when he called for me and I'm there when he needs me. He was able to hear the children laughing and playing as he drifted into an afternoon nap.

Finally a chance to live OUR life TOGETHER.

Our live is a series of graceful falls. Nothing ever goes as planned but somehow everything falls into place as if it were meant to be.

I figured out I can't do it all. Everyday I'm forced to choose between Jared, our children, or cleaning the house.

I told Dr. Mac before we left that Jared's true recovery will happen at home. That statement held true, Jared has improved so much.

Jared talks to me everyday. He yells my name from across the house just to ask me what I'm doing. He says "Hey baby" when I walk through the door. He has an opinion on what he eats and drinks. He tells me when he feels bad or if he's hurting. Sometimes we talk for hours about what's going on in our lives. He can tell me almost anything.

Jared doesn't talk much to anyone else. I think the reason is because I know how to talk to him and he knows that I can understand him. He struggles with his speech. Most of the time he speaks in a soft voice and his words run together. He has a problem describing things or thinking of the right words. With a lot of practice I've learned how to draw the words out of him.

Sometimes I feel like the crazy lady when I tell other people about the things he says. Our family and friends come by for visits. It's a bit awkward for them to talk to Jared I guess.

Usually he doesn't say or do much of anything when other people are around. They don't know him like I do and it hurts me so much. It hurts me when people talk or treat him differently then they would have before the accident. I guess that is part of it though.

In the last few weeks Jared has been aggressive at times. Usually something physical happens to provoke these episodes. Today when I got him out of bed (he wasn't ready to get up) he swore and punched me in the stomach. Later on at the pool I upset him when I grabbed his chin to hold his face out of the water and he tried to bite me. I couldn't let him go to get away from him so we struggled for a bit. When I asked him what was wrong he said "I want to bite you!". I tried to get him to tell me what was going on and all he could tell me was that he was mad. We sat for a while on the bench in the pool and talked until he calmed down.

So far the anger and aggression have been the hardest to deal with. It's like someone flips a switch and he goes nuts for a moment or two. It's hard to tell what is going to set him off because sometimes somethings are okay and other times they are not. I'm trying to be more careful and communicate with him more. Things go smoother when I tell him what to expect.

For the most part Jared is sweet and loving. I think the change in is temperament has something to do with the reality of his situation setting in. He's more self aware these days. I few days ago I broke his heart, and mine, when I told him the left side of his body was paralyzed. He has significant short term memory loss so I have to tell him what's wrong with him often. He's kind of like Drew Barrymore in "50 first dates".

The day before yesterday I was finally able to get Jared to walk for the first time since being home. He walked about 10 feet all together. His left knee isn't strong enough for him to stand on, it collapses every time he puts weight on it. I was able to get him to walk holding on to the rail on the deck and blocking his left knee with mine forcing it to stay straight. I've asked his PM&R doctor to order a KAFO brace for him. That's a fight I have yet to win. The doctor flat out told me no. I've debated with her on the matter and she agreed to look in to it.

I've been waiting for over 2 months now for an answer.

I'm at a point that I feel like I'm rambling. I'll continue to write but I can't imagine it will be very exciting. From here I suppose I'll write about the daily aspects of our lives and my fight to recover Jared.

Thank you for reading our story, I hope to give it a happy ending.

I guess I owe you guys an update huh?

2010-06-20T22:22:00.000-07:00

Where do I begin?

So much happened so fast I got behind in my blog. I'm just now getting the chance to update everything that was missed.

Here is an update that I didn't get the chance to finish so it was never posted:

So much has happened I don't know where to begin!

Wednesday (1-27-10) I flew to Virgina. I planned to spend a week training to take care of Jared before flying him back home to Arkansas.

During my layover between flights I joined the weekly conference call. I was less than two hours from being there in person but I called anyway just to see what was going on. I never expected the first words I heard.....

Dr.G: "Your husband is walking."
Me: "Wait.....what?"
Dr.G: "You husband walked today."
Me:"What do you mean he walked today?!"

Dr.G explained that Jared stood in the parallel bars and walked the full length of the bars. Jared needed a lot of help, but he was supporting his own weight and taking steps.

I knew that Jared was starting to stand, I never expected steps! I imagined some kind of harness suspending him from the ceiling, or some super sized baby walker. I couldn't imagine how in the world Jared could have walked, he can't even move the left side of his body!

I sat on my last flight thinking about everything that had happened since June. At first I found myself smiling, thinking of the recovery that Jared had made.
Moments later I found tears pouring from my eyes. We were leaving the only people that had been able to help Jared. Those people believed in us and fought with us. They listened to me when no one else would. What was I going to do without them?

I told the social worker that I wanted to be completely responsible for Jared's care while I was there. I needed to know before we went home that I could take care of Jared. I knew that I could feed Jared and medicate him, but physically could I really do this? Every single day.... could I lift him? Not just once, but every time he needed to be moved... I would have to pick him up.

The social worker had arranged for me to stay in Jared's room. The nurses were going to teach me how to take care of Jared. Friday we would be moved to an apartment in the hospital so that I could take care of Jared on my own. Tuesday we would move back to Jared's room until he was discharged on Wednesday.

When I arrived Jared was eating dinner. He seemed happy to see me as I replaced the nurse who was feeding him. Dinner was mostly uneventful. I immediately started spooning food into Jared's mouth without even allowing him the chance to feed himself. Jared has been dependent for so long I forgot that he can do some things for himself.

That night as I climbed into Jared's bed I noticed how much Jared was starting to fill out. I ran my hand across his chest and down his stomach telling him that his muscles were starting to come back and how sexy he was. I pulled the sheet down to his waist to get a better look, I couldn't believe it. I kept going on and on about how great he looked and running my hands up and down his body. Eventually I looked up only to find another surprise.

A smile. Not the forced lopsided smile I had seen so long ago, but a real one. His eyes were bright and his mouth was hardly lopsided. Both corners were pulled up into a BIG FAT SMILE! I could almost hear him laugh, I still can't promise that he didn't.

For me it was so much more than a smile, it was an emotion, a thousand words from the heart of my husband, and a memory that would last forever.

I fell asleep that night in my husband's arms. I laid there knowing that there was more to come.

Thursday I woke up to a smiling Jared. His eyes were closed but he was wearing a smile from ear to ear. I laid there in his arms as the nurse asked him if he was ready to get up, he nodded "no" as he continued to smile. The nurse came in several times, each time Jared nodded his head "no" with his eyes closed and his big smile. Eventually I had to get out of his bed so he would get up. Of course the staff thought this was absolutely hilarious, Jared normally wakes up early ready to get out of bed.

I was slightly disappointed Thursday. Nothing impressive had happened. Jared was groggy during his speech therapy. His regular physical therapist was off and I wasn't able to see him walk, I did lift training instead. After therapy Jared napped in his wheelchair. Dr.Mac let me listen to the alarms on the Baclofen pump, it sounded like Jared swallowed a cell phone.

At dinner I was exhausted. I watched as other patients trickled in to eat their dinner and leave. The dining room had cleared out completely and I could hear the nurses laughing down the hall. Jared stopped eating and asked "What are they doing?". At first I didn't know what to say, Jared had never talked to me like that. He answers questions and repeats words and sentences, but NEVER has he just talked to me. I told him I didn't know what they were doing. Then he asked "Do they want to get me a banana pudding?". I almost fell over. I explained to Jared that I didn't know if they had banana pudding but I would get what they had. Still in awe I retrieved the pudding from the refrigerator, Jared picked chocolate and said "I love chocolate pudding.". I continued to talk to Jared for the rest of his meal. It wasn't an easy conversation, I constantly had to ask him to repeat himself and speak louder. I told him that I really liked talking to him, he responded with a surprise "really?...". I told him yes and that I really missed having a husband that I could have a conversation with and that I was getting lonely. His next words were a sting of reality "I know how you feel...".

It had never occurred to me that Jared was lonely or missed talking to me. I guess because he couldn't tell me those things I assumed he didn't feel them. When I called and talked to him most of the time he didn't seem interested. I felt horrible that I had left him lonely and literally speechless. I felt so selfish.

I tried to keep him talking, I was afraid if he stopped talking I wouldn't get him started again. At some point I asked him if he missed Tyson. I was trying to see if he remembered Tyson considering he was the newest addition to the family. Jared told me "Yes, I took him to the big house across the street." for a moment I was confused. I was thinking of home before the accident and I didn't know what he was talking about. Then I realized he was talking about our visit at Christmas, he remembered that we came to see him! Jared had gone with us to the Fisher House and he had in fact taken the kids to the big house across the street! He had a new memory!

Oh so many new possibilities for Jared's recovery...

Jared chose to play bingo that night. We nibbled on junk food as we played, I chose the big bingo card so Jared could see. Jared cheated by sticking extra chips onto the card. Even in the crowded room I was able to hear Jared talking. When I asked him if he wanted more of his sandwich he said "I've had enough.". At the end of the game Jared called my name to get my attention..."I have to pee.". We raced upstairs not making it in time.

Normally Jared wouldn't care if he was wet but this time he was trying to pull his clothes off. Something about Jared had changed at dinner, the staff had worked so hard to get Jared to do these things for the past few months with no success.

I decided to go ahead and do Jared's bowel management since he needed to be cleaned up anyway. This involves giving Jared a suppository and sitting him on a bed side toilet. The night before Jared protested by pushing us away and refusing to lay on his side, it was going to be much more interesting now that he was talking.

Jared: I don't want a suppository.

Me: Jared you have to have this to make you poop.

Jared: I don't have to shit.

Me: Jared, because you don't tell them when you have to go to the bathroom they give you this to make you go when they want you to.

Jared: I'll tell them when I have to shit.

Me: Honey you have to have this tonight, tomorrow you can talk to Dr.Mac about it.

The argument continued, finally I gave it to him anyway. Jared sat there for a bit and then said "I suck.". I asked him what he sucked at and he said "talking.". I explained that he had a head injury that messed up a lot of things. I told him that if he kept working at it he would get better. I told him that he had been in a coma for two months and that he had been in the hospital for seven months now. The look on his face was total shock. I told him about the accident and that it had nearly killed him, I told him that he was alive by the grace of God and that at least he was getting better. He responded with "This is so fucked up.". He said it a few times and I asked what was so fucked up....."That you can't hear me.".

My mind reeled as I laid in bed that night. Jared was talking, he did in fact have opinion, he also was capable of remembering new information. Until now it had been easy to tell myself that Jared was unaware. I told myself that he didn't miss me, home, or our children. I convinced myself that Jared wasn't lonely, but how many people had just sat and had a simple conversation with Jared in my absence? Jared didn't show any emotion in the past so I only assumed he didn't have them.

That was as far as I got with the update. This is the rest of the story as I remember it...

I took care of Jared for the four days in the apartment. Some days he would talk to me and other days he didn't talk at all. Jared's family was excited that he was finally talking, they called to talk to him almost every night.
I was happy to hear Jared talking, not just talking but finally knowing what was going on inside his head. It also scared the hell out of me.
Now that Jared was talking I was finally beginning to see how his brain was working, the things that he thought about... and a lot of it didn't make sense.

One night as I rolled him into the apartment he waved his hand towards me. It was as if he was signaling for me to stop or get down. He was looking at something in the hallway that wasn't there. When I asked him what he was looking at he shushed me. When he finally spoke he told me that he was looking for Brandon, his Army buddy from his first deployment.

This crushed me. I was convinced that he was hallucinating or having some kind of flash back.

This was my fear. All the months I had waited for him to speak his own words, I was secretly afraid he might not be "all there".

I pushed all those thoughts away and simply told his family that we were unsure if he was making sense or not because he couldn't talk very well. I told them as time went on, when we could understand each other better, that we could better access his mental status.
The first night alone with Jared in the apartment I fell apart. I was so tired from moving everything we needed, training, collecting, and figuring out medications. I had to cook our dinner and do all the things that taking care of someone like Jared requires.
I began to believe I had bitten off more than I could chew.

At the end of the night I was so happy to finally be alone with Jared. I had waited so long to lay with my husband skin to skin. I wanted to feel him next to me, warm, loving, and alive.
Jared watched me strip my clothes and climb into bed. He reached out and pulled me to him, I buried my face in his neck.

Oh it was wonderful. I felt the stubble of his beard and smelled his hair. He wrapped his arm around me and rubbed up and down my bare back. I felt as if I could have laid in that moment forever.

The phone rang.

I talked to Jared's father for a few minutes only to look up and see Jared peeing off the side of the bed. He tried not to pee in the bed by aiming over the side, still he failed and I had to change the sheets.

"I had to change the sheets" seems like a task simple enough....yeah, no. Dead tired I began the process. I found the clean sheets, removed the old ones by rolling Jared from side to side, poking the clean sheet under him. Stretching, pulling and using my foot for leverage I finally wiggled the corners of the sheet on the bed. I cleaned Jared and the puddle in the floor, remade the top layers of the bed, and finally crawled in.

I cried.

I cried out loud and my body shook with each sob. I thought to myself "How will I do this everyday?". Will everyday be a struggle for the smallest things?

I felt a hand rubbing me on the back...Jared. He could hear me crying and he was trying to comfort me.

In that moment I realized no matter how tough things were, I would never be alone, or unloved, as long as Jared was alive.

I rolled over and snuggled into Jared and fell asleep.

Jared's feeding tube had been removed in the beginning of January. The Baclofen pump and helped so much with his swallowing he was finally able to eat and drink a normal diet. He could eat and drink enough to sustain life.

The last of the life support had been removed and he was living just fine all on his own.

Absolutely no one in the medical community thought this would be possible.

I was able to see Jared walk, only once, he hasn't walked since.

I requested for Jared and I to fly home on a commercial airline. The doctors in Arkansas thought we were insane. Dr. Mac sided with me and the social worker booked us a flight home.

February 3rd we flew home to Arkansas. The day before the flight we trained at the airport so we would know what to expect. The airline was incredible. I didn't have to do a thing, they took great care of us.
During our layover I went to Wendy's to grab some lunch. I waited in line for what seemed like forever. As I waited a flight attendant came over to let me know they were ready to put us on the plane as soon as our food was ready. They took pictures for us and we walked the terminal with the pilots. The flight attendant even kept an eye on Jared so I could go to the bathroom on the plane.

We did run into a small problem in flight. Jared stole a purse. He was sitting in the aisle seat and the seat across the aisle was empty. The lady sitting in that row sat her purse in the vacant seat and Jared snatched it up. I apologized and gave it back, she smiled sensing Jared wasn't the standard purse snatcher. I cracked up laughing a few minutes later, the woman knew what I was laughing about and she laughed with me.

When we landed in Arkansas and man from the hospital came on the plane. I suppose they were worried about how Jared held up during the flight. As we left the secured area we walked into a mob of people. Jared's family and a handful of people from the hospital were waiting for us. The hospital staff told me they had an ambulance waiting if we needed it. I told them we were fine and that we would meet them at the hospital.

Chaos, AKA Jared's family ensued. We chased babies around the airport as we searched for lost car keys. Luggage was put into the wrong cars as well as family members. We assembled the family parade and headed to the hospital.

When we stormed the hospital, all fifteen or so of us, the other family members were asked to wait in the lobby. We checked Jared in and met his new doctor.

As the family members left Jared began to speak. I guess all the people were a little much for him. Right before I left another expected heart break ripped through me... he didn't know who I was.

I asked him if he knew where we were, he replied "Cancun". I knew as soon as he said it he was reliving his senior trip. When I asked if he knew who I was he identified me as his cousin. I explained that I was his wife and I asked if he knew my name, he nodded yes and mumbled "Kesha".

Ahhh...yes the high school sweet heart, his first love, Kesha. It was fitting considering we were in "Cancun" Mexico. I laughed it off the best I could and explained his thought process (to the family members) on the drive home.
Jared's brain is like a brand new deck of cards that have been dropped. All of the cards are there, just out of order. I assured them that eventually he would get things back in order, silently worrying that he never would.

From February 3rd to May 3rd Jared stayed at the VA hospital in Little Rock. After his first week there he was allowed to come home on weekend passes.

Every Friday I drove 2.5 hours to the hospital to pick him up then 2.5 hours back home. On Sunday I made the trip 2.5 hours to take him back to to the hospital and then drove 2.5 hours home again only to do it again the following weekend.

This is the point when things got really crazy.

I was doing all of this alone. I tried to make it to the important appointments that he had. Jared was diagnosed with seizures, sometimes I had the kids, sometimes I didn't.

My body hurt after taking care of Jared all weekend. I was so tired and sore I spent all week resting for the next crazy weekend.

When Jared was home I had to figure out how to manage daily life, with him and the kids. I had to figure out how to do things like buying groceries and loading the whole family in the car. Everyone needed dinner and baths at the same time. It seemed like everyone pooped simultaneously...especially when I was the most tired.

I had to face some harsh realities about what my life would be like. I doubted myself more than ever, I was scared. I was drained in every way possible and nearly broken.

I would like to say that I was strong, that I could carry the world on my shoulders if I had to. I wish I could say I was happy, positive, and focused.

I was not.

I broke free while I had the chance. I hung out with friends and tossed my worries out. I did the things I wanted to do, when I could. I sent the baby to Jared's mother and took a trip.

I went camping and white water kayaking. I drank screwdrivers with raccoons and floated 5 miles of cold river.

As I drug my kayak up the hill at the end of the float I realized this was exactly what I needed. I needed to complete something. I needed to accomplish something, not because I had to, because I wanted to.

I felt strong with the new muscles gained from caring for Jared. I was young and alive. I was saying goodbye.

I never wanted this for me. I've abandoned life as I know it, it will never be the same. I will never be the Jennifer I was a year ago no matter how much Jared recovers. I realized a lot of my pain was for me. Living a life I never wanted. All I needed was to say goodbye and a promise to myself.

"I will be happy. We will be happy. Do whatever it takes."

I returned home to wait for Jared to be discharged from the hospital with a new outlook on life.

Finally May 3rd, 313 days after Jared's accident, Jared came home to me.

A happy new year!

2010-01-16T22:59:00.000-08:00

We are finally settling into the new year. I have been extremely busy in the last few weeks, sorry I didn't update sooner.

For Christmas the American Legion adopted us. They raised enough money to fly me and the children to Virgina to see Jared. I was so excited a nervous. At first Catlin refused to go, she's afraid to fly. That little girl made a huge decision to swallow her fear and fly to see her daddy for Christmas. I was so proud of her. I had to swallow my fear as well and board a plane with to children who had never flown before. Catlin was afraid and Tyson is comparable to an orangutan. The flight was smoother that what I could have ever dreamed, God was with me LOL.
The American Legion arranged transportation, car seat, food, Christmas gifts ......... absolutely everything.
Jared's mother had asked me several times what I planned to do about Christmas. I didn't have the money to fly us all there and I didn't want Jared or the children to be alone on Christmas, I simply told her "It will all work out, God will help us be together.". He certainly did didn't he?

When we arrived Jared was eating dinner. Jared immediately knew we were his family. He hugged and kissed me and the kids and nodded his head yes when I asked him if he was happy to see us. After a few minutes I took the children down to the hall to eat dinner so the nurse could finish feeding Jared. We weren't able to visit long because we had to check into the Fisher House, we were all tired from traveling and went to bed early.

The following morning the social worker called me and told me I had to take Jared to the Fisher House on a four hour pass. It was somewhat of a trial run to see if I could manage Jared and the children all at the same time. I'll admit I was scared, the Fisher house is a good walk from the hospital. Maybe a few blocks? It isn't bad when your alone, but with two kids and a dependant husband? I thought to myself "It's now or never..." and got dressed.

The four hour pass wasn't as difficult as I thought it would be. Catlin pushed her brother in the stroller and I pushed Jared in his wheelchair. Everything was smooth until dinner time. Christmas dinner was being served at the Fisher House, I had to call and ask for an extension on the pass so Jared could eat with us. With some hesitation the doctor agreed.

Dinner was insane. The whole visit had gone so well, I didn't think twice about sharing a meal with my family... I should have.

Our first problem was getting food to everyone. I'm very afraid to leave Jared for any amount of time, leaving Tyson unattended is wreck less, leaving the two together is completely insane. Catlin came to the rescue, she sat with Jared and Tyson (strapped tightly in the high chair) while I attempted to make four plates of food as fast as I possibly could. I could hear Tyson screaming for food and Catlin scolding Jared for grabbing a fork, in my head I was praying for God's help and wondering what people were thinking of me.
I dropped the plates off at the table, this made Tyson scream louder and Jared was scolded even more by Catlin for grabbing at the food. I quickly made our drinks and settled in to eat.
Only I wasn't able to eat. Tyson has a terrible habit of throwing unwanted food on the floor and Jared has a hard time getting the food on his fork. I took turns feeding Tyson, Jared, and shoveling rejected bites of food into my own mouth.
Catlin needed another drink, Jared and Tyson were wiggling around in their chairs, in the chaos of our dinner a sweet lady sat down beside us and offered to feed Tyson. This was helpful but caused another disaster, Tyson finished eating before anyone else.
The lady excused herself when Tyson was finished and he pooped. The poor kid started screaming to be free and Jared wasn't even half way into his meal. At this point everyone is starring at us, and I was ready to pull my hair out. I tried everything to pacify Tyson as I continued to feed Jared, huge fail! Catlin saved me again, she finished her meal and I set Tyson free. He stunk but he was happy running around, Catlin followed him to make sure he stayed out of trouble.
Jared decided to sit up and feed himself allowing me to shovel much needed food into my face. As Jared finished his meal I could hear Catlin repeatedly telling Tyson "no". I peeked down the hall to see Tyson trying his best to climb the stairs, still stinking. He started to scream at Catlin so I dashed over and snatched him up. I dug around for my room key and asked Catlin to take him to our room to play while I cleaned up.

Again the eight year old saves the day.

I started to clean up our dinner mess only to find Jared digging in his pants when I returned from the kitchen. I tried not to make a scene as I removed the hand that he was scratching his junk with. I reminded Jared that there were other people that could see him digging in his pants. Apparently Jared didn't understand the problem with scratching his business in public and began to inspect his hand for poop.

At this point things are so crazy I'm laughing out loud.

I cleaned the high chair and wheeled Jared to our room, the phone rings, it's my mother. Immediately she tells me she just got off the phone with Catlin, Tyson was screaming in the back ground. Catlin had told her that she was in our room with watching Tyson and that I was with Jared.
My mother misunderstood and thought we were staying in a hotel. She thought I had left my children at the hotel ALONE while I went to the hospital.
She was hysterical and ripping me a new one.

I'm laughing even harder as explain the real situation.

When I finally returned to the room the kids are laughing and playing, I guess my mother had called when Tyson was still upset about the stairs. I finally changed Tyson and we walked to the hospital.
I gave a brief report to the nurse, I was told to be back at the hospital at nine in the morning for training. I had to be approved to lift Jared before he was allowed to stay over night at the Fisher House. We hugged and kissed Jared goodnight and walked back to the Fisher House.

I collapsed into the bed and cried a little.

This was day ONE. How in the world was I supposed to survive an overnight visit much less the rest of our lives? Can I really do this? At this point I'm thinking having Jared at home would be putting a life in danger, I just wasn't sure whose.

Day two. I reported fifteen minutes late for training with a man who could be Will Ferrell's long lost cousin. This is the same therapist I talked Jared into tickling a while back. Will's cousin has a great sense of humor and excused me for being late. He explained how to properly lift Jared and then asked me to try. Because Jared is so much taller than I am I have to force his knees apart and stand between his legs to begin my lift. As soon as I was in position Jared gripped me with his legs. Will's cousin was trying to correct me on something and asked me to move. I couldn't, Jared had his legs locked around me and he refused (or couldn't) let me go. I wiggled around trying to free myself as Will's cousin laughed. Will's cousin then cracked a joke by asking if we needed a minute, then helped me escape. He explained to Jared that he needed to wait at least until he got his pass to try any of that stuff. I completed my lift training all though I don't think Will's cousin was very confident in my ability.

I packed the things Jared needed and we went to locate the children. Catlin had been pushing Tyson in circles in the hallway with the stroller. We ate lunch (repeat of previous dinner) and paraded back to the Fisher House to start our over night visit.

I rearranged our room and put Tyson's pack and play in the handicapped shower and wheeled Catlin's roll away bed into the bathroom in front of the sink. I wasn't sure what was going to happen during the night and I didn't want to disturb the children if Jared needed to be cleaned up or something.

Tyson took a nap and Catlin watched cartoons while Jared and I cooked dinner. Jared was there for moral support mostly. He sat there drinking a Pepsi and watched me cook. Another family had given me a bag of chicken strips and I scraped up enough food for sides from the house pantry. We had baked chicken strips, left over green bean casserole, and macaroni and cheese.
It wasn't the best meal in the world, I had to make the macaroni with sliced cheese and stolen milk/butter but it was the first time I was able to cook a meal for my family since June.

Catlin called to tell me Tyson was awake just as I put the food on the table.
This meal was enjoyable. We didn't have a ton of people starring at us and I allowed Tyson to make his normal huge mess by allowing him to feed himself. Jared sat up and fed himself for the most part and I was free to feed myself. Again Catlin returned to the room with Tyson as I cleaned our mess. I giggled at Jared as he snatched one of Catlin's uneaten chicken strips while I cleaned the high chair.
I stuffed everyone into their jackets and we walked to the hospital for Jared's evening meds and bowel management. Jared had gone Christmas shopping for the family so we gathered his presents and walked back.

Catlin left milk and cookies for Santa with a note. She also left a apple for the reindeer, everything had to have a label on it because everything at the Fisher House must have a label. Catlin went off to play with another little girl and I put Tyson down for the night. Jared and I snuggled up in bed and called a few family members.
When we finished the calls I searched around for the remote, I found it wrapped in the blanket at the foot of the bed. When I leaned forward to get it Jared smacked me on the rear. I smiled as I backed up trying to position myself next to Jared, then I felt someone biting my butt! I looked back to see Jared propped up on one arm, mouth open biting me, with a completely innocent look on his face.

Day three (Christmas Day) began with Jared poking me repeatedly until I woke up. I woke up a few hours before to give Jared his morning meds and went back to sleep. It was absolutely amazing to wake up with Jared beside me in bed. I laid there for a while starring at him.

Before Jared was injured he jumped out of bed just seconds after waking up, now I could lay there and enjoy him for a while before we started our day.

Soon the kids were up, Catlin was anxious to see if Santa and the reindeer had eaten their treats. I dressed everyone and we investigated the kitchen. The kitchen was packed with little old ladies baking stuff, they volunteer to bake goodies for the Fisher house every week. Catlin found her dishes empty with a thank you note form Santa. (I didn't leave the thank you note or eat the cookies.)

We scarfed down a small breakfast and took Jared's gifts to the family room with the Christmas tree. There were presents under the tree for all of us and the note directing Santa to the kitchen was gone.

We opened our gifts, Jared gave me a digital picture frame, Catlin got a fashion doll that you make clothes for and some gadget you take a picture with and it turns it into a little animated cartoon, Tyson received a toy phone. I'm not sure who left the other gifts under the tree, I thought they were from the American Legion but when we returned to our room the house manager brought in several large boxes of gifts from the American Legion. The gifts under the tree are still somewhat of a mystery.

At noon I had to take Jared back to the hospital for more medication. I couldn't give Jared the meds at the Fisher House because he needed an injection and I hadn't been trained to give it to him. Catlin pushed Tyson around in circles as I learned how to inject the blood thinner into Jared's stomach.

The rest of the visit is a blur. A few more stressful dinner events, Tyson's first hair cut, and several conversations with Jared's doctors and therapists.

Our biggest problem was not being home. It's hard to control a toddler in public under normal circumstances, this visit was almost the end of my rope. I enjoyed our visit with Jared but I was ready to go home.

I left Virginia with more confidence than I came with, I know I can do this. At home it will be easier, less stressful, and more organised. I felt confident seeing Jared interact with the children, he wasn't just some brain damaged guy sitting in a wheelchair with kids running around him. He was a father, a parent, he remembered our children and he loved them. He gave them hugs and kisses, he helped me as much as he could. When Tyson cried he looked concerned, he held onto our son and kept him from falling when Tyson sat in his lap. He snuggled with Catlin and made funny faces to make her laugh. He even held Tyson on the bed so I could change him. I felt like we were a team again. I realize now how amazing our little family is.

Since our visit during Christmas Jared has made some incredible improvements. Jared can stand, with assistance in the parallel bars. He was also able to ride in a regular car and he's helping with all of his transfers using a sliding board. A few days ago Jared's speech therapist called me, she had Jared hooked to a voice amplifier. She said he was chatting people up in the hallway and singing, he seemed to be excited about the whole thing.

During my visit I talked with Dr. Mac, he feels Jared is to the point he can return home to continue his recovery. February 3, 2010 Jared will return to Arkansas. He will fly to Little Rock on a commercial airline with me. Jared will have to stay at the VA hospital in Little Rock for two or three weeks before making the transition home. I hope they allow him to come home on the weekends with me during his stay.

Jared is having some pain in his right knee. When he arrives in Little Rock they will do a MRI to see what's going on. Jared's right knee was damaged during the accident, because there were no major breaks it was left untreated. The brain injury took priority and when they finally decided to do something about it he was so contracted he wouldn't fit into an MRI machine. Now with the Baclofen pump he is relaxed enough for the MRI. I hope this won't require another surgery.

I've been buzzing around trying to get things done before Jared comes home. I've completely renovated our bedroom and I've been cleaning and reorganising everything else. Our next project is the bathroom, but funds are low so it will have to wait a little longer.

Thank you for reading and supporting our family, thoughts and prayers mean so much to us.

December 11, 2009

2009-12-11T00:31:00.000-08:00

I returned home from Virgina a few days ago, it was a bitter sweet visit. I arrived on Sunday (11-29-09) prepared for Jared's surgery the following Monday. Someone miscommunicated and the surgery was delayed...for the 4th time. They pushed it back to the following Monday. I was disappointed but happy that I would be able to spend some time with Jared before he had the surgery.

I spent the first part of the week talking with doctors and therapists. Dr. B (a new fellow at the unit) explained to me that a few weeks ago they cut the dose of Amantadine (nuro stimulant) in half. Also during that time his prescription for Riddilin had expired, because the fellows were switched around during that time they didn't get the notification immediately. They thought because of these changes Jared was starting to regress. The doctors arranged all the medication back to the original dosage and hoped he would soon be back functioning as he was.

During the beginning of my visit Jared wasn't too active. He didn't participate in his therapies, he wasn't responding to questions, and he had stopped trying to speak.

This is Jared sleeping at the nurses station.

About mid-week Jared seemed to come around. He was more aware and he was able to answer questions. He tried to speak several times, I didn't understand him.

Mrs. M (speech therapist) wanted to do some trials of a more normal diet. She wanted to try some soft foods that weren't pureed. On the day of the trial Jared received a sandwich. This is not what Mrs. M had in mind for Jared. I had already started feeding Jared pieces of the sandwich. I was pinching off small bites and feeding it to him. Mrs. M walked in and was horrified of the meal Jared was served. Still willing to give him a chance she allowed me to cut the sandwich into quarters and give it to him. Surprisingly Jared was able to eat the sandwich. We had a problem when Jared decided to shove the last bite into his mouth. It was way too big and he was unable to chew it. Mrs. M and I talked, she still did not want to approve him for the next diet. Her fear was that Jared would receive another meal like the sandwich and would wind up choking. She told me she would try to make an approved list for Jared and hoped to give him more variety in his diet.
Jared eating his sandwich.

Signing "I love you".....it's backwards but a great try.

Friday Jared and I were able to go on our first outing. We went to the movies with the recreational therapist. I was so excited that day when I woke up, I haven't been able to take Jared outside of the hospital since he was injured. I was disappointed to find Jared's nurse had dressed him in sweat pants. Sweat pants are fine for rolling around the hospital going to therapies, but not out to the movies! I really want to make Jared's life as normal as possible. I've prepared myself for some strange looks when I take him out, the least I can do is make sure he is dressed well. After Jared's morning therapies I wheeled him back into his room to change his pants. I sat there for a minute thinking about how I was going to do this. Calling the nurses to put Jared into the bed just to change his pants was going to take more time than I was willing to wait. The hospital hadn't approved me to make transfers by myself yet. I finally decided to change Jared's pants with him sitting in the chair.

Getting the sweat pants off was easy, I had done that many times with him sitting in the shower chair. I wiggled Jared's jeans up as far as I could get them and then asked Jared to lift his butt out of the chair by pushing his right foot down on the seat. It actually worked! Jared pulled his jeans up on the right side while I pulled on the left. His jeans are still too big for him but it doesn't really matter because he can't stand. I finished the outfit with his new jacket and matching hat. Jared wasn't able to eat lunch before the movie because it takes him the better part of an hour to eat and the movie started at 12. I packed some thickened drinks in my purse and rolled down stairs to wait for the van.

Jared attempting to smile for the camera while we waited for the van.
The ride to the theater was good, Jared seemed interested in our surroundings. We were going to see Old Dogs, I always choose comedies because I'm not sure about Jared's thought process. I decided to grab us some food on our way in, Jared doesn't have enough weight to miss a meal and I couldn't resist. I felt so sorry for him knowing he couldn't have popcorn, it smelled so wonderful! While I was getting the food the recreational therapist pushed Jared into the theater and settled in. The movie was starting as I settled in, noticing my seat was to Jared's left. I didn't allow Jared to feed himself, I don't trust him because he takes huge bites sometimes. It was dark, I was nervous not being able to see Jared's expressions, his right arm was on the opposite side of me making it impossible for him to reach over to me. Jared's right hand is the only one that functions at the moment and he uses it to communicate 80% of the time. I absolutely hate Jared's wheelchair! It seems to always be a barrier between us, I can never seem to get close enough to him while he's in it. I really wanted to be able to snuggle up against him during the movie, I kept telling myself one day we will be home and I'll to what ever I want with him!

As soon as we were back in the van Jared closed his eyes and napped on the way back. I'm sure it was exhausting for him.

Saturday morning I was scheduled for family training. One of the therapist had to watch me lift Jared before we could leave on his four hour pass. Jared is much harder to lift now that his muscles are so contracted. I was nervous about lifting Jared with a trained professional watching, it's nerve racking to have anyone watch me lift him. I got tickled because Jared wound up wrapping both legs around my waist the therapist was trying to show me something and asked me to move. I couldn't! Jared had me and he wasn't letting go! I tried wiggling loose which only made the therapist laugh harder, he told Jared to control himself at least until we got our pass. The poor guy had to pry Jared's legs apart to get me out. I was finally approved lift Jared by myself although I don't think the therapist had much confidence in me.

It was pouring down rain and freezing cold so we had to improvise. Jared arrived at the Fisher house warm and dry with the exception his right hand.

I planned to order Jared pizza but we had some issue with Pizza Hut's delivery service. We waited 2 hours to find out our order had been canceled! Another patients mom was kind enough to pick up McDonald's for us. By the time Jared was finished eating it was time to take him back.

Sunday was sunny and warm and Jared had another pass. This time I planned to take Jared out after lunch and bring him back in time for dinner. Jared seemed to be tired so I wheeled him up to my room and put him in bed. This was the first time I have been able to have Jared completely to myself. It was nice to see Jared laying in a real bed, after six months of snuggling origami I was finally able to lay comfortably next to Jared. I stripped down so I could feel Jared next to me skin to skin, Jared thought this was an excellent idea and couldn't get his clothes off fast enough! We settled into bed and soon Jared was snoring. It was so wonderful to lay there next to him, I can't wait for him to come home so we can lay like that every night.

After a few hours Jared woke up, laid there talking to him. He answered my questions with head nods and refusing to open his eyes. Those few hours we were "normal", just another couple laying in bed having a conversation.

Eventually I had to get up and get dressed. When I got out of the bed Jared tried to get out of bed too. For a moment I thought he might actually fall out of the bed trying. It hurt so much to remind him that he couldn't stand yet.

Monday Dr. R called me as I was walking over. They had a surgery canceled and they wanted to operate on Jared early. After signing the consent forms I walked Jared down to the OR and kissed him goodbye.

When I spoke to Dr. R she said everything went ok. They didn't have any problems during the procedure but they were having a hard time waking Jared up. She thought he was conscious but was unable to get him to follow any commands or open his eyes. I went in to see him in recovery and he seemed to be resting. I looked at his stomach, I could see the outline of the pump but the wounds were covered. As I was digging around in Jared's blankets I saw him scratching his leg and realized he was awake and pretending not to be. I asked him to open his eyes and he shook his head no. I asked him if he was ok...nothing. We've been working on a little sign language with him so I asked him to shake his hand "yes" to let me know he was ok, he did. As the nurse walked up I asked him to shake his hand again if he was feeling any pain, again he shook his hand yes.

Jared right after surgery.For the rest of the day Jared laid in bed with his eyes closed. At one point he was grabbing for me and trying to hold onto me, I could tell he was in quite a bit of pain. I was so worried about him, a few times he had a death grip on my leg and was moaning. The nurses kept him medicated and when Dr. R came in to check on him he was able to answer her questions. He claimed his stomach hurt and his back didn't. I left for the night when he seemed to be resting well. I called later to check on him before I went to bed.

Tuesday morning Jared was still tired. He hadn't had anything to eat or drink since the surgery and I was determined to feed him. He was already in his chair so I rolled him to the dining room. Jared was asleep and refusing to wake up or respond. I told him he didn't have a choice he was he eating and I didn't care if he wanted to or not. I made him some oatmeal and placed a little of it on his tongue. Jared perked right up and ate the oatmeal and drank a carton of milk. Jared wanted more and ate another serving. I felt so relived after he ate! I let him sleep until lunch and made him eat again.

Going to therapy was useless Tuesday because Jared wouldn't wake up. I spent the afternoon worrying about leaving the next morning. I snuggled with Jared until four, I asked him if he was ready to eat and he said no. A half hour later Jared woke up ready to eat. He was so alert and ate all of his dinner. I talked to him for a while and we worked on a few signs. the last few days we have been working things like eat, drink, I love you, and T.V. Usually when I ask Jared to sign something he writes it out in the air with his finger. When I show him the signs as I'm asking he signs back. I don't know how much damage was done to his short term memory, I don't know if he's capable of remembering the correct signs.

I told Jared I had to leave the next morning. I asked him if he wanted to come home with me he nodded "no". He's always told me that he wants to come home so I didn't understand why he was saying no now. Then I asked him if he wanted to come home when he was better and he nodded "yes". I tucked him in for the night and kissed him goodbye wishing I really could take him with me in the morning.

November 25th 2009

2009-11-17T20:45:00.000-08:00

Jared's surgery was delayed. It was rescheduled for today, but the antibiotics they gave him for the UTI gave him CDIFF....again. Surgery has been rescheduled for November 30th.

My visit with Jared was wonderful. I was so amazed when I walked into his room for the first time. He was wiggling around in bed, his movements were so much stronger and faster. He turned his head an looked at us as we walked into the room. He embarrassed each of us as we leaned in for hugs. Jared kept trying to speak but none of us could understand what he was saying. After several guesses we gave Jared a pen and paper. At first he was trying to write at the top of the paper but was missing it completely, he has severe double vision from the brain damage. When we finally adjusted the paper under his pen he began to write. We all sat there silently as we watched him write "I love", in unison we read the words then sat in silence for a few moments. Finally I broke the silence asking Jared "Who do you love?". Secretly hoping he remembered how to write my name I watched him lift the tip of the pen and point to his mother's hand.

Jared focused most of his attention on his mother, taking her hand and kissing it, staring at her as if she seemed familiar, and reaching out for her.

It was late so we only spent a few minutes with him before checking into our own room. My heart ached after I left the hospital. I couldn't help but to wonder if Jared remembered me at all. Sometimes brain damage erases years of memory, what if I had been erased? Tears burned my eyes as I tried to push those thoughts away. I live on those memories every single day, they push me when I feel like giving up. They make me smile when I feel like crying and they soften my heart when it hardens with frustration. How could Jared live without those memories? Those memories were our life, our love, and our happiness. How could we be without.........us?

I laid in bed and squeezed my eyes shut. I wanted to pray but I had no idea what to say to God, I thought about it for a while and asked God for a dream. I laid there praying over and over asking God to send me a wonderful dream about Jared, until I finally fell asleep.

I woke up the next morning (Thursday 11-12-09) sore from the ride and excited to see Jared participate in his therapies. We had a busy day rolling Jared from one therapy to the next. I talked to Dr. Mac about the surgery and the delays. I asked him if Jared could come home for Christmas, he didn't say no, he told me didn't think it would be good for Jared. After they place the Baclofen pump it will take up to a month to adjust the dosage correctly, riding in a plane can mess with the pump's settings. I also wouldn't want to risk having something go wrong with it, we don't have a doctor here familiar with Jared's condition. I also thought Jared may still be sore from surgery and traveling may cause him pain. Considering all those things I decided not to bring Jared home for the holidays.

Jared's therapist's were excited to show me what Jared could do. In speech therapy he was able to mimic noises. He was also able to say my name. Mrs. M showed me the computer Jared has been working with. It has a touch screen and Mrs. M asks Jared to pick out certain objects on the screen. Jared made a good effort but his double vision makes him push the wrong objects sometimes. I was also able to watch him eat ice. I was amazed at how well he was functioning.

Next we went to physical therapy. Mrs. S showed me that Jared was able to pull himself into a sitting position and sit for a few minutes unassisted. Jared was also able to kick his right leg up and forward. I watched as Mrs. S held her hand up beside her, she instructed Jared to kick her hand, after several tries he finally did. Last was the grand finally, Mrs. S was especially proud of this accomplishment. She instructed Jared to move his left foot, he pulled his foot up several times! It was only a slight movement, but he did it. Jared was also able to hold his left leg up off the mat, usually he lets if fall to the side when he's laying on his back. I thought I was going to burst with excitement, I hadn't seen Jared move his left leg/foot like that since the accident. This gives us hope that the surgery will help him regain more function. Maybe one day he will be able to stand or walk.

At lunch Jared was able to communicate which foods he wanted to eat with gestures. He was able to feed himself, drink, and lick food from his lips. He even picked the table we sat at, apparently I picked the wrong one and he let me know about it.
We played a game in recreational therapy. He answered true or false trivia questions with head nods. Some of the answers were wrong but was able to participate. He said the word "yellow" to choose his game piece rather than pointing.

As the day progressed Jared began interacting with me more. He seemed to enjoy my hugs and he kissed me several times. He suggested that my shirt was cut too low (it wasn't!) by trying to pull my shirt up to cover my chest.

That afternoon I was so tired, after Jared's therapies we took a nap. I pushed Jared' s wheelchair next to his bed and climbed in. I laid there with my lower body in Jared's bed and my upper body cradled in Jared's arms. This was the moment I had driven two days to have, it was completely worth it.

After dinner they put Jared into bed. We laid in bed watching TV for a while. I was so happy to be back in Jared's arms. I used to tell him that his arms were my favorite place, I fit perfectly.

Friday (11-13-09) we repeated the same therapies. I spoke with the nutritionist, she wanted to put Jared back on some of the tube feedings. They switched his diet a step up from pureed foods to mechanical soft. Jared was having a hard time chewing the meats and wasn't getting enough protein. I asked her to let me try a few things before she ordered more tube feedings, she agreed to give him a few more days.

The day drug buy so slowly, all I wanted to do was lay in bed with Jared holding me.
That night I laid in bed talking with Jared. I told him I loved him and asked him if he remembered me, he nodded yes. I asked if he remembered Tyson and Catlin, again he nodded yes. He also claimed to remember the accident with another head nod. Jared and I wound up in a mini make out session before I tore myself away so he could get some sleep.

Saturday (11-14-09) I woke up with a mission to get more protein in Jared. I brain stormed and did some google searches trying to figure out things I could make or buy for him. I wished I could cook him his favorite foods, I pictured how our family dinners would be when he was finally able to come home. While I was on the computer I remembered had an account at Pandora.com. I logged him in and played the Temptations station. Jared's mother teared as we sat there singing "My Girl". Jared's lips moved with the words of the song, no noise came out as he sat there bobbing his head, drumming his fingers, and singing my girl to the end. As the song finished I sat there remembering the video he sent me while he was deployed. I watch this video all the time, sometimes it makes me smile, sometimes it makes me cry. Jared didn't know how much I would cherish this silly video when he sent it to me as a joke.

Saturday afternoon I went shopping for Jared. I bought him some Muscle Milk to make protein shakes with. I also bought several other things packed with protein so he would have some alternatives if he wasn't able to eat what they were feeding him.

That night I laid in Jared's bed, it was so hard to hold back the tears as I told him I would be leaving the next morning. He fell asleep while I was kissing him softly on his neck and whispering in his ear, "You are perfect, God made you just for me." "I will love you forever, I can't help it, I never could." "You are mine forever and I always be here taking care of you.".

I tried to ease out of his bed several times. Each time I pulled away Jared woke up and pulled me back to him, he would lean forward and give me a passionate open mouth kiss. He held me tight until he drifted back to sleep, waking as again as I tried to leave.

I can't find the words to describe the pain I felt as I left the hospital that night. It gets harder each time I say goodbye.

November 24th was our second anniversary. Two years ago I married Jared, I kissed him goodbye soon after and waited for him to return from war. I remember telling him how much I loved him, I told him that no matter what he was coming home to me. I told him I wanted him no matter what happened that I would always love him. I said to him "Dead, alive, legless, or brain damaged...your coming home to me. I will take care of you, you belong to me now."

Jared came home to me, alive and completely healthy. He flew into the US on our one year anniversary. We were finally able to start our lives together.

Now our second anniversary has come, again I am waiting for Jared's return.

November 9. 2009

2009-11-09T21:26:00.000-08:00

The social worker from the hospital called me today. She said Jared has another UTI and has been taking antibiotics for the last 4 or 5 days. Jared's surgery may be delayed. They are going to run some more blood tests, if the infection is cleared up the surgery will be on November 13th if the test shows he still has the infection then they will reschedule.
The nurse also told me that Jared's tube feedings were discontinued today. Jared eats enough to sustain his own life now! They will still use the PEG tube to give him water and medicine until he can drink thin liquids.
It's hard to imagine that only a few months ago doctors were telling me he might not survive and if he did that he probably wouldn't wake up from his coma.
It's so amazing to watch God's work...

November 5, 2009

2009-11-05T18:29:00.000-08:00

I talked to Jared's speech therapist yesterday, she had so many wonderful things to say about Jared.

We talked about goals before I left Virginia. I told her my goals were communication and eating. She has been working very hard on both.

She said when she approached the doctors about feeding Jared her goal was "pleasure feedings" to satisfy my desire to feed Jared. Jared has completely surpassed her goal.

She said Jared was doing very well, eating 75 to 90% of his meals. He is even able to feed himself. She also said Jared was able to eat a banana, he chewed and swallowed with no problems.

She has hope that Jared will be able to eat enough that the feeding tube can one day be removed. Eventually Jared should be able to have a normal diet.

Jared's communication has also improved. 90% of the time Jared answers yes and no questions correctly. "Mrs. M" the speech therapist told me a few days ago Jared was able to write his name.

She also told me that he rolled himself to the nurses station and tried to sign himself out of the unit (all patients have to sign out before they leave). She told him if he was signing himself out that he had to write the time he was leaving. She told him the time was 15:oo and he wrote 1500 on the paper.

The nurses tell me Jared communicates well with them. He lets them know when he's tired or in pain. He tells them if he is ready for bed and is able to get their attention. Usually he communicates with gestures, sometimes he is able to whisper.

Yesterday I had to drive to Little Rock for some paper work. I had some extra time so I stopped by the trauma hospital. I spoke with a few people who cared for Jared, I also spoke to the nurse manager from the ICU. I gave them an update and explained that Jared had only needed a shunt. She was so happy to hear Jared was getting better and was completely shocked that all he needed was a shunt.

I haven't been holding up as well as I should be. I've been really stressed lately and a little depressed. I do good for a while and then it hits me. I guess we all have our breaking points and I'm sure I'll feel much better after I see Jared. He always makes me feel better.

Virginia

2009-11-03T18:58:00.000-08:00

August 17, 2009 I was so tired. I didn't sleep at all the night before, I was so worried about everything. I spent the night forcing all of our belongings into the two suitcases we were allowed to bring.

I had to have Jared dressed and ready to go by 7am. Our time in the Little Rock VA had been so stressful, they were short staffed most of the time and seemed to be unfamiliar with Jared's condition. On this particular morning I had a disagreement with Jared's nurse, she didn't want to dress the bed sore on Jared's tail bone before the flight. I wound up doing it myself.
An ambulance picked us up and drove us to the airport. They loaded Jared into a tiny plane and strapped him down. Jared was very alert during the flight, he even seemed to enjoy it. He kept reaching up and touching the wall of the plane and throwing the objects we handed him to hold.

When we landed in Virginia another ambulance was waiting for us, we drove 30 minutes to Hunter Holmes McGuire VA Medical Center. There were several people standing outside the emergency room as we unloaded Jared. I giggled to myself when I realized what they must have been thinking as I unloaded both suitcases from the back of the ambulance.

They wheeled us up to the polytrauma unit and settled Jared into bed. I was finally able to meet Dr. G, the man that was finally going to help Jared.

Dr. G had so many questions, I answered as many of them as I could before I burst into tears. Unable to speak I dug into my bag for a picture of Jared and haded it to Dr. G. I said "This is my husband, it hurts so much to look at him like this. I can handle the brain injury and coma, I can't handle seeing his body in this condition." referring to the 50 pounds he had lost and the bed sores on his spine and tailbone.

I went outside and called our family members to give them an update. Emotionally drained I dragged myself back up stairs. I dried a few tears and leaned down and gave Jared a hug. He reached up and hugged me back, patting me on the shoulder. Jared had never shown me affection like this since the accident, it was like he knew how hard I had fought for him and he was thanking me.

Jared knew who I was and he loved me. I will cherish that hug forever.

With Dr. Mac in charge and Dr. G following we came up with a game plan. The MRI showed Jared's ventricles were slightly enlarged. It could have been caused by shrinkage of the brain after it was injured, or it could be normal pressure hydrocephalus. Hydrocephalus is caused by over production of cerebral spinal fluid or under absorption. Either way it causes pressure to build in the fluid around Jared's brain, enlarging the ventricles.

The doctors decided to try some nuro stimulating drugs and suggested that we do a lumbar puncture to test Jared's intracranial brain pressure. They would also remove 30 to 50cc of fluid and watch for any improvements.

Jared also began daily therapies. Five days a week Jared attended physical, speech, occupational, recreational, and kinesiotherapy.

August 24, 2009 the lumbar puncture was done. Jared's pressure was slightly elevated. The following day Jared showed a significant improvement. In occupational therapy Jared was able to open a water bottle, attempted to drink from it several times, then replaced the cap. Jared was no longer considered to be in a coma.

33cc of spinal fluid was the only keeping my husband in a coma. Doctors had given up on him and had tried to push me into placing him in a nursing home. They hadn't listened to me when I told them he had regressed after the drain was removed. In my opinion he would have emerged from his coma sooner if they had listened to me and done something to help him. Finally someone had listened to me, with an open mind, and those people were able to help Jared.

I wasn't crazy after all.

Jared had great progress in the following two weeks, eventually pressure began to build and he regressed.

Neurosurgeons and the PM&R doctors agreed Jared needed a shunt. The shunt would be a permanent solution to the problem and would offer the best chance for recovery.

September 15, 2009 neurosurgeons placed a shunt in Jared's brain. Surgery went well and they were even able to use the existing hole where the EVD had been. Jared was a little sick the day after surgery, but continued to improve as the days passed.

September 21, 2009 I left Virginia and went home. The hospital was doing a great job taking care of Jared, there was no real reason for me to be there. I desperately needed to go home and pull our life back together. I had so many things to do and all of our bills were past due. I planned to work and make the changes necessary for Jared to come home.

Since I have been home Jared has made an awesome recovery! He became more active, started following commands more consistently, answering yes or no questions, eating pureed foods, drinking thickened liquids, pushing his wheelchair down the hall, and interacts with people. A few days ago he played Uno with his speech therapist. He's doing so many things. He is able to communicate sometimes with gestures, hand signals, and very whispered words. Last weekend he told me "I love you" for the first time.

Jared is still suffering from weakness on the left side of his body. He can't move it at all. His muscles are contracted and he can't straighten his legs or left arm. Dr. Mac suggested a Baclofen pump. They did a Baclofen trial with good results and Jared is scheduled for surgery November 13th. I plan to leave on November 10th to see Jared.

I'm so excited, I can't wait to see him.

Welcome to the VA!

2009-11-02T15:02:00.000-08:00

July 31, 2009 I wheeled Jared over to the VA hospital. Normally they call an ambulance to move patients to the VA hospital across the street. It seemed pointless to me, I put Jared in a wheelchair everyday and pushed him around, why not across the street?
We rolled Jared into the VA emergency room to be admitted, I remember the nurse looking at me, head cocked to one side "Is this Mr. M?". I replied with a simple "yes" and explained that I was his wife and that we had come from the trauma hospital next door. I'll never her next words, "I thought he was in a coma?"
I laughed a little and said "He's in a coma, not dead."
So many people had such a strange impression of comas. I guess in the past coma patients were left in bed and given standard medical care to keep them alive. I guess people just waited for coma patients to wake up. They found it odd that I wanted to get Jared dressed or eat lunch with him in the cafeteria. I remember the way people stared at me when I put his feet in the grass and how nervous his family had been when I rolled him around outside the hospital.
We can't sit around on these coma patients to wake up, we might be waiting forever! I was determined to live our lives and do as many normal things as possible. Who wants to live life when you can't get out of bed?
The VA hospital in Virginia wouldn't have a bed available until August 18th. We would have to stay at the local VA for 3 weeks.
When he was admitted to the local VA they placed him in a step down ICU unit. they hooked him back to all the monitors that we had fought so hard to be free of. There were several beds in the same room with other patients. I wasn't able to sleep in Jared's room, he had to stay the night at a new hospital all alone.
The VA hospital wasn't as nice as the newly renovated trauma hospital. I was really starting to wonder about my choice to move Jared to the VA system. I was scared.
On the second day they moved him to a private room on the cardiac floor for more observation. Eventually they moved him to a regular floor and we waited.
I went home and stayed for a week. Jared's family took turns sitting with him while I was gone. I wanted to spend time with our children and tie up all the loose ends at home. I had planed to stay three months in Virginia and I didn't know if I would be able to fly home for a visit.
While I was home Jared's mother fought with the doctors to remove the cervical collar. It was causing sores on Jared's face and enough time had passed it was safe to remove.
The ENT doctor accessed Jared before I left. He wasn't sure removing the trach was the best idea so we agreed to down size it again and give him a speaking valve. He placed a consult for general surgery because Jared still had sutures in the base of the trach. General surgery came while I was home. He saw Jared coughing mucus up into his mouth and completely bypassing the trach. He said if Jared could do that he didn't need the trach and removed it.
When I saw Jared for the first time I was so excited. His trach and collar were gone and he look so much more comfortable.
I collected different objects for Jared, hoping one day things would just click for him, and that's exactly what happened, literally. One night Jared was restless, I gave him an ink pen to hold. The kind with the button on the end. A few seconds after put the pen in his hand he started clicking it over and over again as fast as he could. He flipped the pen though his fingers and clicked the button against his body. Spinning the pen around again he started trying to draw on his chest. It was like watching someone come back from the dead, I was amazed. I placed a notebook on Jared's bed and he began to write, I couldn't read it, but still, he wrote. I starred at him for the longest time, watching how natural his movements were.
From that point on Jared began to rapidly improve. Everyday he was doing something new and exciting.
With the trach gone I decided to give Jared showers every night. I'm still not sure why, but Jared began to make noises when he was in the shower.
Every single night I put Jared in the shower chair and gave him a long hot relaxing shower. I encouraged him to moan and make noises, I made noises too.
One night I accidentally splashed a little water in Jared's eye. I held my breath as I watched him reach up and wipe his eye!
The next night he scratched his ear. Jared began throwing balls and exploring his surroundings. he even managed to push himself a few inches in his wheelchair. We started thumb wrestling and doing little hand shakes.
I went shopping and bought all the little things I could think of. A spray bottle, tambourine, squeaky toys, and a lighter. Jared was able to use all the objects I showed him.
It was so exciting to see Jared improving, but there was a small battle in progress. The VA didn't want to pay to fly Jared to Virgina. They were trying to find other options, they also told me that they wouldn't send him unless it was medically necessary, and that their hospital couldn't provide the treatment, and that the facility in Virgina had to be the closest facility that offered the program.
Dr. G saved us again. He sent all the information along with a letter from him personally. In the letter he described the reasons why he wanted Jared there and how they could help him.
The social worker exhausted all other charities and programs, things were looking bad.
I told the social worker that Jared was going to go to Virgina, with or without their help. I called commercial air lines and they would fly him, but doctors
told me they wouldn't release him to fly on a commercial plane. I asked them if I could drive him there, NO! I also asked if we could leave AMA, another fat NO. I'm only Jared's wife, not his legal guardian, I can't do anything AMA.
I knew right then if they wouldn't send Jared to Virgina, I would kidnap him. I was going to sneak him out of the hospital, drive him to Virgina and drop him off at the VA. So what if they arrested me? I could see the headlines "Wife kidnaps comatose husband to seek medical help.", it was going to be a mess.
Thankfully the hospital agreed to transport Jared, no jail time for me. I guess when I started suggesting the unthinkable (placing a coma patient on a commercial flight), they realized I was serious.
Before we left for Virgina I wanted to make one last visit. At this point Jared had been in a coma for over two months and was finally showing signs of recovery. I dressed Jared, placed him in his wheel chair, gathered "objects" up, and wheeled him into the ICU of the trauma hospital. I pushed Jared up to the nurses station and asked them to page Dr. E.
Dr. E approached us a few minutes later with a look of amazement in his eyes. Just sitting in his chair without a trach and his eyes open he had surpassed Dr. E's original prognosis. I explained Jared's improvements, telling him about the functional object use, and that Jared could brush his own teeth. He watched Jared try to push his chair and reach out for the wall, a smile on his face the entire time.
He told me he wanted to know how this all turns out and gave me his email address. Dr. E said "I'm glad your taking him to Virgina, your dining he right thing. I'm so proud of you for fighting for him, keep pushing.".
We visited the 8th floor for a few minutes and left to pack up for Virginia.

Looking back.

2009-11-02T05:04:00.000-08:00

I was so lost during my time at the trauma hospital. I had so many questions with few people to answer them. Most of the doctors involved in Jared's care were reluctant to give us hope at all. I can only guess that they were worried about giving us "false hope" in case things didn't work out.
It would have been nice if I could have found one person or family member that had experience with Severe Diffuse Axonal Injury. Someone that could have told me what they did regarding their loved one, and what the outcome was. I'm a rational person (most of the time) and I understand that every brain injury is different. One person may recover while another (with the same injury) does not. I just wanted someone to answer my questions that had experienced the long term effects of Jared's type of injury.
The neurosurgeons that we were dealing with in the beginning, had no idea what life is like after the initial trauma. That's not something they experience, they patch them up and send them on to the next doctor.
I researched the Internet constantly. I was looking for every detail that I could find about brain injury, DAI, and the symptoms Jared was suffering from. I researched trachs, peg tubes, left sided weakness, clinical trials, recovery stories, medicines, coma recovery, coma stimulation, and so many, many, more things about the human body.
I tried to tell the doctors that Jared could follow commands. When they couldn't get him to do it when they came in for rotation, they assumed I was just the hopeful, crazy, grieving wife. They tried to tell me he wasn't actually following commands, it was just coincidence. A reflex.
When Jared began to regress after the EVD drain was removed they didn't believe that either. Frustrated I gave up on the ICU doctors and thought I would have better chances of convincing the Physical medicine & Rehabilitation doctors. I didn't have much luck there either.
I researched treatments and coma stimulation. I wanted to try something, anything, to make Jared wake up. Most of the doctors were reluctant to do anything at all. This was a trauma hospital and they really weren't worried about helping him recover. I had to ask them or beg them to do simple things like taking the Foley catheter out and down sizing his trach.I was even told down sizing the trach would cause another regression.
Each morning the doctors made their rounds. Each morning they asked if I found a place to move Jared.
I couldn't find anything thing other than nursing homes for geriatric patients, most of those wouldn't accept him with a trach. Rehab programs wouldn't take him because he couldn't participate in rehab. I found ONE acute care hospital that would offer therapy, but they wouldn't accept his insurance. No one wanted Jared.
I finally found a PM&R doctor that was willing to help me. We talked about the things that I researched and she's the one who prescribed Ambien. She also gave me permission to get Jared out of the bed and into a wheelchair. We talked about stimulation and she was willing to let me try it.
I got Jared out of bed everyday. Soon he was wearing real clothes and going outside. I did everything I could think of to help stimulate him. When we went to the cafeteria I put things in his hands and asked him to hold them. I offered him things to eat, smell, touch, just to see if he would try. I liked going to the cafeteria with him, that's where we ran into all the staff that had been taking care of Jared in ICU. They could see that he was getting better, and I loved seeing their reactions.
I finally told the doctors to find a place that would help Jared with his brain injury. When they did I would be more than happy to move him, and NO NURSING HOMES!
Finally the PM&R doctor (the one that was trying to help) approached me about the VA. With all of our other options exhausted she told me about Dr. G.
Dr. G was at the hospital when Jared was injured. He was very interested in taking care of Jared but he moved to a VA hospital in Virginia for a fellowship program. Dr. G wanted to specialize in Jared's type of injuries. She said Dr. G had been following Jared's case since the beginning and they spoke regularly. I told her I was willing to do anything or go anywhere, if they would actually try to help Jared.
Dr. G arranged a 90 coma emergent program for Jared. They were going to move Jared to the local VA until a bed was available in Virgina.
When we left the trauma hospital Jared was following a few very simple commands with a lot of coaching. He could move his right hand more, and seemed to be more alert.
They day I rolled him out of the trauma hospital I was standing there talking to CNA I had become friends with. I was holding a water bottle and handed it to Jared. I told him "Hold this for me." and Jared reached up and grabbed the bottle from me. The girl was so shocked and excited she was speechless. I gave her a big smile and pushed Jared into the hallway without looking back.

ICU and the 8th floor. (some photos may be disturbing)

2009-11-02T02:44:00.000-08:00

The trauma hospital allowed me to stay in Jared's room over night. The only time I was required to leave was during their ICU shift change from 6 to 8, am and pm.
Most of the staff members were great and allowed me to participate in Jared's care. Jared had so many people visit him while he was in ICU. I never knew so many people loved him.
ICU was such an emotional roller coaster, I can't remember a lot of the details.
I have some of the details written in emails and updates to friends. I'm going to post some of those to explain where we are today.

June 25, 2009

We are on day two. His brain has stopped bleeding, the fluid in the (EVD)drain is clear for now. He has a fever that they are able to control, fever is normal for brain injuries. He has some movement in his right side, they say it's purposeful. The left side has reflex movement called posturing. They say his is severely brain damaged and probably will be for the rest of his life. His left jaw and nose are broken. The right side of his face had several fractures. They will do nothing for any of that, none of it is displaced. They will wire the jaw when he has a better prognosis. He chipped a bone in his neck (c-4 fracture), I don't know what they will do with that. He had a few scrapes and such, but all the real damage is to his brain and face.
I'm hoping for the best and praying for miracles.

June 26, 2009

They slowed down the drain in his head this morning. They are going to see how much pressure builds, I think they are considering taking the drain out if the pressure does well.
I was asleep when the neurosurgeon came in so I'm hoping to talk to the day shift neurosurgeon before they kick me out.
I am hopeful that he will make a great recovery. They won't tell me what to expect really, but he's so strong, even now his body is so strong when he moves. I can barely hold him down for them to mess with his IV and stuff. Somehow I just know that things are going to be ok. I've been dealing with everything very well. I've only actually broken down and cried a few times. Seeing the tubes and watching them work on him doesn't bother me, I don't know why. I thought it would but it hasn't.

June 27, 2009

It's been a long day. I still have the computer, I can use this as well as cell phones here in the ICU. The staff here has been very cooperative and let me bend the rules, a lot.
To start my day off the general surgeon told me that Jared was brain dead. He told me that he absolutely would not survive, pretty much all that was left to do was pull the plug. He said that the neurosurgeon might not agree and that I would have to talk to him. He told me that we could run some test to see the levels of brain activity and determine what to do from there. He told this to the entire family, they are always with me when I talk to doctors.
We were all crushed. I asked to speak to the neurosurgeon. Of course he was going to be in surgery until 7 pm. We waited, and mourned, all day. I was absolutely sick all day. I requested to lay next to him in bed, they allowed it, so I spent all day laying in bed next to him crying. There was a steady stream of people in and out all day to see him. Some people I have never even met before (mostly military). It was the saddest thing I've ever dealt with, me laying in bed crying, and a room full of big tough soldiers crying. I bonded with each one of them. Each of his friends not just the soldiers. One of his Army friends placed a hand on me and Jared, he said the most beautiful prayer I've ever heard. It touched me so much. I can't even begin to describe the love, support, encouragement, and compassion I've seen today. Today was truly life changing.
We talked to the neurosurgeon tonight. He said Jared's body would probably live through this. He said that he thought Jared would even be able to breathe on his on eventually and that he could live machine free. He also said Jared could wake up from his coma one day. Mentally he didn't think Jared would ever recover. He said it's not likely that he would talk or have motor skills, or anything for that matter. He would be a body. He said to expect anything more would be reckless.
All we can do it wait. There isn't even an option to remove support and end things at this time. He still has enough brain function to support his organs and can't be considered brain dead. He doesn't even qualify for the testing. Not that I want to remove support, it's just not even an option.
Jared hasn't improved at all, his condition hasn't gotten worse either. His eyes won't even react to light, his pupils aren't even the same size (that's really really bad). There are so many details I don't even have the strength to type.

June 28, 2009

Not any real changes today. He has fluid in his right lung, they put a scope in his breathing tube, looked around, and took a sample of the fluid. Most likely it's something he aspirated. When they looked at the x-rays of the lungs for the fluid, they saw a air pocket between his left lung and heart. For now it will go away on it's on, but if it gets bigger they will have to put in a chest tube.
Things are getting pretty stressful, it's just dealing with everyone else that makes this so hard. Sometimes I want to scream. I feel like I'm in nurse training, I don't even have time to be the grieving wife. I'm continuously cleaning wounds, checking monitors, explaining medical terms and answering questions to family. I've been doing some physical therapy with Jared at night to keep his joints loose, and now I have to suck the backed up saliva out of his mouth with the sucker thing. Apparently since they took him off sedation he is producing more saliva. I had to MAKE the nurse put a cooling blanket on him today, His temp was close to 103 and Tylenol wasn't touching it. I tried cool wet towels but that didn't help. He's been on Tylenol and the blanket all day and he still has a temp. I had to prop up his feet with a blanket, he's getting drop foot and they are being slow about making his splints, I don't even think they wanted to make them because no one thinks he will ever use his feet again. Last night the nurse left Jared's drain (the one for the brain pressure) closed. They are supposed to leave it open so he doesn't build pressure, they have to check the closed pressure every hour and record the amount of cerebral spinal fluid. He tried to be discreet when another nurse called him out about it, but I still knew what was going on.
UGH! This is going to be a long night, I keep having to suck his mouth out every 5 minutes and he keeps biting his breathing tube and making the machine go off.

June 29, 2009

Things have been a little better. Family and friends have settled down, most have returned to their homes and jobs. Jared is showing slight signs of improvement. He hasn't been sedated for the last 2 days and nights. He is also starting to regain his corneal reflexes, basically he reacts when you poke him in the eye. His pupils are reacting to light, only slightly and very slow, but still it's better than nothing. His ICP (brain pressure) has been good. They are slowing his drain and trying to wean him from it. He is starting to develop pneumonia, hopefully that won't get too bad. He is being more active, he's moving his left side more.
Last night I was able to give him his complete bath. They let me wash his face and tend his wounds. They shaved him and changed his collar. They moved his IV on the left arm and took blood. Everything was going on at once, he was fighting so hard. His whole body was shivering and he was coughing and bucking around on the bed. It was just too much, I had to leave. I just couldn't watch it anymore. That was the first time I had to leave. Of all the things I have witnessed I just couldn't handle seeing him fight like that.
At some point during the night he moved around and unhooked the air from his breathing tube. The alarm went off and woke me up. I could here him gurgling and trying to cough. I didn't see the air was unhooked so I went to get the nurse and left him with NO AIR. I was just too out of it to notice. I can't believe I did that. The good thing is now that I look back, the noises I heard were him breathing on his own.
His feeding tube is in and he his tolerating the food. He should be having bowel movements soon. I tell the nurses I just can't wait until he has his first one, because he will be doing something new. Thank God for small victories.
Last night I left the hospital for the second time. We went to have dinner while the ICU was closed. I was worried sick. I even called his nurse to check on him while I was out. By the time I got back I thought I was going to pass out and never wake up. I wanted to crawl out of my skin. I don't know how I will ever be able to leave here
.
June 30, 2009

Your not going to believe this, I can hardly believe it myself, HE IS FOLLOWING COMMANDS! The Dr's haven't seen it yet but me, his mother, and his nurse are convinced. He will squeeze your hand when you ask. He will answer questions like "Squeeze my hand if you are in pain". He will also move his eyes when you ask him to blink (he can't really blink yet), he also pushes your finger with his toes when you ask him to. I'm trying not to get too exited about it yet. I realized he was listening to me when I was trying to work his joints. He kept trying to resist and when I told him not to he would stop. I casually mentioned that to the nurse so she asked him to follow some commands, he followed all her directions!
He has a team of neurosurgeons so there's never just one opinion. So far I'm happy with the lead neurosurgeon. He also has a specialist for his face and a general surgeon for his body. There is a respiratory team for his breathing and such.
He looks so good today. It's been a long time since I've been this happy. He also seems to be sleeping at times. Usually he just looks and feels the same all the time, but now it seems like he has times when he's awake and asleep.
If the Dr's agree that he is in fact following commands I don't know if they will consider him to be out of the coma. Apparently there are different levels of coma.
Also, his pupils are starting to even out. They were 4 and 2, now they are like 4 and 5.
They closed the brain drain a little. They are going to close it a little at a time until he can live with it completely closed. I don't know how long it will be until they remove it.

July 1, 2009

Today Jared has not been real active. I think maybe he was so relived he communicated with us that now he is able to relax and rest. He has followed a few commands several times today, he hasn't done it for the Dr's yet. He has to be active to be able to do it, I think he fades in and out of consciousness. He is blinking his eyes more. The doctors actually said his eyes are IMPROVING, that's the first time they have used that word since we have been here. They are very hesitant to say anything good.I know they do it to prepare us for the worst.
He had his first bowel movement today, I was so exited! I know it seems silly but at least now I know all that stuff still works.
I feel so much better.

July 2, 2009

They took his "brain drain" out. They closed the drain at 1pm yesterday and left it closed all day and night. They did the CT and said everything looked the same and they took the drain out. They even let me stay with him while they did it. They scheduled the trach and the feeding peg surgeries for Monday. I'm so exited, I'll be able to see his whole face!!
He hasn't been really active lately, that worries me a little. I keep telling myself that he just needs time to rest and heal. I'm sure when he's had time he will be very active again.
I think the Dr's are starting to believe that he really is following the commands. The nurses have started writing it in their charts. I keep explaining to them that he drifts in and out, I told them they need to access him when he is actually being active. He responds when he's already active. He also responds when he's "resting", it just takes him a little while to come around. Usually he starts responding right after the Dr's leave.
He is collecting fluid in his body, mostly his chest, neck, and arms. Today I noticed his right arm was huge. I told the nurse and she didn't want to do anything about it. They had a blood pressure cuff on his upper arm, and IV in the middle and a restraint on his wrist. I begged the nurse to move the BP cuff and the IV. She told me it wouldn't help, I told her it would make ME feel better though. Reluctantly she did it.I had to ask her if propping it up would help the swelling, then she propped his arm up. What would have happened if I hadn't been here? I shouldn't have to beg them to do their job. How are they supposed to draw blood and such if his arm is swollen like that??
I know that every little thing matters to me. Are these things really not that big of a deal? Am I one of those crazy family members who complain about every thing?

July 3, 2009

Things have been going well. His BP has been good. His eyes (pupils) are reacting as well as they once did. I think he may have built a little pressure on his brain after they removed the drain. I think they will improve eventually when his body adjusts. He has been moving his eyes more. In the past his eyes were just fixed half open. Now he closes them when he's resting and he opens them when he's active. He can also blink like a normal person when his eyes are open.
I'm convinced that he's waking up and that he knows who I am. This morning I was holding is hand, I tried to let go and he squeezed me tighter every time I tried to pull away. his eyes were open and the left one was focused on me. I told him I needed to get a chair and that I would be right back. I sat there with him squeezing my hand and told him how much me and the kids love him and miss him. I told him how much we needed him and that we would always be here taking care of him. He sat there looking at me and blinking, then a big fat tear rolled out of his eye, down his nose and onto the bed. I wiped the tear away and told him I knew he was still with me.
I think he was having a emotional response to what I was saying. He tears sometimes but not like that. I feel so much that he's still in there loving me. I can just tell, I'm positive. I guess it's just the way he reacts to me and no one else.
I thought about it today, even if he doesn't improve, I can be happy with this. My hopes and dreams were that I wanted to know he could be happy and receive pleasure and comfort. I wanted him to be able to live without machines, and the Dr's think he will.
I'm missing my kids. It's killing me to be away. Tyson is standing and taking a few steps. He's learned how to climb out of the playpen and he's called everyone momma but me. I missed it all. Catlin is so worried. She's been so sweet to me. I miss seeing the everyday things. Hopefully I will be able to leave here for a while and see them. I don't want to leave until after Jared's surgery Monday.

July 5, 2009

Yesterday wasn't so good. When I came back from dinner they told me Jared had CDIFF. He got it from the antibiotics they have been giving him. They drugs killed the good bacteria in his bowels. Now he has this bacteria in his stool and it is infectious. I can't stay over night with him until it's gone. I have to wear gloves and a plastic gown when I'm in his room. I've compared it to getting a yeast infection when a woman takes antibiotics, it works the same way.
Last night was my first night away from him. I was so hurt I couldn't be there with him. This could go on for weeks. I've reasoned with myself. If I have my children come here, I can spend my nights with them and my days with Jared until he gets over it.
Jared hasn't really been active. He continues to look at me, and I still feel as if he knows who I am. I think with all that's going on in his body he's not strong enough to do very much or even stay awake very long.
I hate being away from him, I start to have doubts and worries. I find so much comfort just being near him.
Monday can't get here fast enough. I can't wait to see his face. I often wonder if he will move his mouth or be vocal in anyway. I can't wait to touch his face and kiss his mouth. I've learned to appreciate and celebrate the smallest things.
I'm alone with my kids now. This is the first time I've had them all to myself since the accident. Tyson has grown so much in the last 11 days. He was more exited to see my mother than me. Soon he won't be a baby anymore. I have yet to hear him say momma. He has two more teeth as well. Catlin did allow me to hold her for a while, that's not something we usually do.

July 8, 2009

I wish I had a better update with happy stories, but I really don't.
Jared is no longer following commands. He still responds to pain, but he is hardly active anymore. He rarely puts up a fight when they do anything to him.
I did some research Sunday night before his surgery on Monday. From what I found things did not look good at all. I couldn't find anything about anyone actually recovering from Jared's level of injury. I did find something that said 90% of people who have severe DAI (Diffused Axonal Injury) usually enter into a prolonged vegetative state. Recovery (from the vegetative state) means they gained no real function but eventually became aware of their situation, then slowly watched themselves deteriorate and eventually die feeling every pain. Recovery is extremely rare and the life expectancy of these people is only 2 to 5 years before they die of pneumonia or secondary infection.
Up until now every single Dr had told me his condition now is what he will be for the rest of his life. They told me to expect more would be reckless. With the prognosis the Dr's had given me, and my research, I decided to delay Jared's surgery. His Dr agreed to run further tests and to consult with a neurologist before we make any more decisions.
After the MRI and an EEG the neurologist met with us. He said that Jared still had a "fair" chance at a meaningful recovery. He said the frontal lobe on the right side was damaged the most. He said that was the part of the brain that controlled emotions, some personality, problem solving skills, ect. He said the best case scenario would be that he learned to walk and talk again. That he would be able to function and have a happy life. He would be able to have meaningful relation ships and practice basic hygiene. He also said that he would be able to be free of the feeding tube and respirator. He said that Jared would never be normal, he would never be able to work or drive. He said that Jared would still have his long term memory but he would forever have short term memory loss. He also said he wouldn't be able to control his emotions and that he would be very impulsive and unpredictable.
The worst case senario would be that he never improves at all. He said the chance of him not improving at all is about 50%, that is if he had to give an actual number.
Jared could be either of those or anywhere in between. The neurologist very reluctant to give up on Jared at all. He suggested that we continue to aggressively treat his condition and encourage his recovery.He also told us that his injury wasn't as bad as others had originally thought. He said Jared's secondary injury was minimal, and that the bleeds and swelling are finished.
I guess for now we will continue. I'm still have hope and never really lost it, I just didn't want to continue to put him and us through this if there was 0 chance of any recovery. That would have been pointless and selfish.
Jared should make the biggest part of his recovery in the next 3 months. If he never improves I still have the option to withdrawal support.
I can't imagine how hard it would be to ever do that. I would either have to watch him suffocate or starve to death. If I can't bring myself to make that choice the only option is to watch him slowly die over a number of years while watching him fight infections, never knowing if he actually knows what is happening to him.
I'm so lost and heart broken. I don't know what choices are the best at this point. I hate myself for even thinking of ending his life, but sometimes the thought having him survie with no recovery is more than I can bare.
I know that I can love him and take care of him if he has some kind of recovery, even a small one. I know that we can live happy healthy lives together. I don't mind taking care of him forever, or years spent on recovery.
I love him and I always will. This is just so hard.

July 9, 2009

Jared had his surgery today. First they did his trach and feeding peg. Then they wired his mouth shut so his broken jaw will heal properly. Last they put in a central line (I'm not sure if that's what it's really called). Before the surgery (and the last few days) they had a hard time getting blood out of him or finding places to put IVs. They could hardly get him to bleed enough for the blood sugar tests. I asked them to put the line in his neck for a while so they wouldn't have to keep sticking him as much. Before the surgery they had to stick a 5 or 6 inch needle in his groin to get blood, that's all it took for me to want the central line.
After surgery he looked and acted better than I expected. His temp dropped down to 93.2 after the surgery so they had to warm him up. I finally got to kiss him directly on the mouth, it felt wonderful to feel those warm lips on mine. He was so cute when I saw him, he was covered with blankets, he even had one on his head. I was finally able to see his whole face, his lips were so cute and pouty. He was more aware than I expected him to be. He spent most of the afternoon and evening with his eyes open looking at us. I noticed today he was trying to track us with his eyes. Depending on which side I was at he would slowly bring his eyes to focus on me. He seemed to be so much more comfortable. I think it's easier for him to breathe too. I noticed that he breathes over the vent more now (that is what they want to see) and he also seemed to have more productive coughs. I also heard him swallow one time. Those are all good signs that he will able to breathe on his own and protect his own airway.
I felt so much more hopeful after the surgery. I hate that I delayed it but I'm glad I did, they were able to go ahead and fix his jaw instead of having to schedule a whole surgery just for that. The less they have to give him anesthesia the better.
The CDIFF seems to be getting better as well as the pneumonia. I think he will go to a step down unit as soon as his breathing improves.
I've been playing his music, talking, and laughing with him. I also bought a book for him today by his favorite author. I guess I will start reading that to him tomorrow.
At some point tomorrow his mother is making me leave and go home. She wants me to spend the entire weekend. I doubt I will. I do need to go home though, I have to get some paper work done and get my driver's licence renewed. I dread going home. Every day I am reminded of Jared and things we did, I can't imagine how painful it will be to go home and see what remians of our life. Catlin misses home and wants to spend some time there. Tyson's first birthday is coming on the 21st, I have yet to make any plans.

July 12, 2009

Jared has been off the respirator and breathing on his own for the last two days! They told me that his muscles may get tired because he hasn't used them in so long, they said they may have to put him back on the respirator to let him rest. He hasn't shown any signs that his body is wearing out and they have yet to put him back on.
He is now able to live machine free, that's a huge step for us. The rest of his recovery is up to him, we just have to wait and give him time to show us what he can do.
He has tested negative on his CDIFF twice. We still have to follow the contact precautions until they clean his room. Hopefully by Monday I will be able to stay with him at night.
He looks so much better. Last night I was able to shave his entire face. It takes me so long to shave him, I guess I'll get better and faster in time. I didn't cut him up like the nurses do, I guess that's what really matters. I used his shaving cream so he smelled so good when I was finished. I pressed my lips to his cheek and closed my eyes and took several deep breaths taking in the smell. For a moment it felt like a normal night, me kissing him goodnight after he shaved. I almost lost all self control and climbed in his bed.
I did go home Friday. That was such a horrible experience. I was nervous all day knowing that I was going to have to leave that day. This was also the day the took him off the respirator, I was so afraid something I was going to happen while I was gone. His dad arranged to drive up and sit with him all weekend while I was gone, he said he would sit here the entire time until they kicked him out at night.
When I did get home I knew instantly that something was wrong. Flies were swarming my font door, I just stood there for a moment really confused. When I opened the door the smell almost knocked me over, it smelled like something had died. I knew that the dishes were still dirty but I didn't think it would be THAT bad. I walked into the kitchen and realized that when requested my fridge be cleaned out incase my electricity was turned off, they took everything out and put it in the trash can, stacked all the dishes on the counter and in a chair in the kitchen.... and just left it. All the food had been sitting in the house rotting for weeks now. I have never seen so many maggots in my life. They were everywhere. They had even fallen off the chair and counter into piles on the floor. I took everything I could outside to wash with the water hose, I dripped maggots all over the place as I walked out with the dishes. My cable and Internet were cut off and my dryer wouldn't work.
Jared's mother came and finished the kitchen for me, I left and went and looked at the place Jared wrecked. Then I went and looked at his bike. When I went home I sat down and called the man he hit. Actually he lives on the same street I do but at the other end. He was a frail little old man. I got tickled because he and his wife answered different phones at the same time, we all said hello about a thousand times. It was a good conversation and they were so relived and happy that I called. They wanted to help in anyway they could and they wanted to keep up with his progress. I'm glad I made that call.
I did every painful thing I could think of. I'm ready to move on, I don't want the pain of seeing something for the first time down the road. Last I went to my sister's and saw the kids. It was bitter sweet and I hung out with them until 3 am.
My sister confessed that they had gone to the place Jared wrecked and took pictures. She said his blood was still was still on the road and they had taken pictures of it. She said when they were finished they cleaned the blood off the road. I looked at the pictures, I'm glad she had them so I could see exactly where he landed, I've slowly been able to but the pieces together and have an idea of what actually happened.
When I left the kids at 3 am I went home and repacked everything I needed and drove back to Little Rock. I feel out of place anywhere but with Jared. I couldn't stand to be away from him. I hurt so bad to see the reality of my life back at home. I got here about 7 am, the ICU is closed from 6 to 8 so I slept in my car in the parking lot for an hour before I could see him. I had a wonderful dream about Jared waking up, I was so disappointed that it wasn't real. As soon as I was able to see and touch him again I physicaly and mentally felt so much better. Then Jared's mother called the nurse and busted me sneaking back to the Hospital. I slept the rest of the morning beside his bed in a chair wearing gloves and a plastic gown. The nurse felt sorry for me and brought me some blankets.

July 14, 2009

We are out of ICU!!! Wooohoooo! We are now on the 8th floor, it's like a step down unit but the whole floor is dedicated to nuro patients. He goes to a "nursing home" from here. If he starts to wake up and can follow commands they will send him to a rehab instead. I'm trying to figure out how he can live with us at home. I may sign up for a CNA class to get more comfortable. I also have to learn about the care he will need and find a place we can all live. Plus I have to find the equipment he will require. I know it's going to be a lot of work, but I will never stop wanting him to be at home with us. It scares me to think of him being neglected and ignored in a nursing home full of old people.
I guess having him at home will be like "Weekend at Burnie's" in a way. He probably won't dance every time he hears music though.
Physically he is doing great. He even managed to hock a loogie on a nurse today. It was pretty funny. I can stay the night with him again, I don't even have to wear gloves or a plastic gown anymore.
I'm trying my best to enjoy spending my nights with him, I won't be able to anymore if he goes into a long term care facility.
His mom is a emotional wreck right now. She's at home now. I asked her to look into some places for Jared to go when he's released from here, she can't do it right now. I guess trying to find a nursing home for a 25 year old son was too much for her.
I've been holding up fine with the exception of going home. I still have a comfort and peace about the whole situation. I still feel like everything is going to be just fine, even though the Dr's have scared me a few times. I don't know yet if he will be this way forever, or if he will eventually recover, or he will die in the next few years. I do KNOW everything will be ok. We will be happy and we will appreciate and cherish the time we do still have with Jared. I will not be tortured by this tragedy. I will not be sad, I refuse to be depressed. There isn't a person to blame or to be angry with. Shit happens, I'm playing the cards I was dealt.

July 17, 2009

Another day on the 8th floor. I actually like it here, these people LISTEN to me.
Last night I couldn't sleep. I cried my eyes out and begged Jared to wake up. The thought of him going into a nursinghome sickens me to no end. I'm terrified to send him to another state for rehab. I want to throw him in the Honda and run away. I want have a secret life with him, no more phone calls and updates. No more Dr's, no more mean nurses, just us. We could spend the rest of our lives laying in bed holding each other, best of all he wouldn't even complain.
But I also know that thought process (this is the part where I delete a whole paragraph, now I will start rewriting the next few sentences) is completely absurd. I pulled myself together and spent the rest of the night doing research. Finally the doctors made their rotation. They always have handful of interns with them. I was loaded and ready to fire about a million questions (thank you google).First I asked when he could be weaned down from his trach and oxygen. The Dr told me that he is wasn't in a hurry to wean him because his mouth was going to be wired shut. He said we could get him into a smaller trach size and wean him off the oxygen. My next question was about nuro storming, he told me that he wasn't the Dr for those questions. He said he would ask the other Dr to come in and talk to me.
A few hours later she did. I asked why she thought he had stopped following commands. I gave her a recap of his behavior and she said that she would try and figure out why by looking at the previous CT and MRIs and comparing them. She said up until this point no one had even questioned it. We decided that he could have regressed because of increased ICP, nuro storming, or weakness due to infection. Once we get an idea of what caused it we could try and fix it. I told her that I was open to trying new treatments, I told her about the ones I had been researching. We agreed to try Ambien, it's been linked to waking people after years of being comatose. She said that she just did a trail with Ambienon a young man that had been in a coma for 2 months, with good results. She said it hasn't really been documented in cases as early as Jared's. Who would have thought a sleeping pill could wake up a coma patient.
Later on I was able to cut Jared's hair. He looks so much better. They also completely weaned him off oxygen.
I spent most of the day messing around with Jared trying to keep him "awake". He had his eyes open for most of the day. We are trying to get him on a "sleeping" pattern. This honestly sounds ridiculous considering he is in a coma.
He seemed very aware today. We (I) talked and he watched cartoons. I read to him and worked some of his muscles and gave him a massage. I'm trying to think of things I can do with him to stimulate him. In my research last night I realized he couldn't taste or smell with the trach, stimulating those senses are out.
He is also slowly becoming more active. He moves his hands a little more and occasionally wiggles his toes. He gets mad and irritated, he makes mean faces at us when we mess with him. Last night it looked like he was trying to open his mouth to object to me shaving him. His jaw is wired shut so he was only able to snarl his lips up and bare his teeth. It was pretty funny, I eventually had to give up because he wouldn't hold his face still.
Ok, that was today. I'm tired and I'm trying to get on Jared's sleep schedule. Maye I'll have some good news tomorrow after our first night on Ambien.

July 18, 2009

We got Jared out of the bed today and let him sit in a chair. They let him sit in the chair for an hour, I played a movie on the laptop and set it in his lap. For the last 2 weeks I've tried so hard to get him to squeeze my hand, move his arms, or wiggle his toes. Nothing. Maybe a few random arm movements or toe twitches but that's it. As soon as I played the movie for him he started moving his fingers. Took his hand splints off just to see what he was trying to do. I still can't believe it but he started moving round and squeezing my hands. He even pinched me. When I tried to pull my hand away he would squeeze tighter. The whole time he sat there watching the movie he was active. After his hour was up the moved him back into bed. He closed his eyes right away and went to sleep like that was the most exhausting thing he's ever done in his entire life.
Today when I woke up Jared was attempting to yawn and stretch his arms. I felt so bad for him so I pulled his arms and rubbed them in an attempt to help him stretch. I can't put into words how excited I am to see him being more active.
They tried the Ambien last night, finally. It didn't seem like it affected him at all. I think maybe he rested a little better. He was more active today than he was yesterday so maybe it helped him rest more and have more energy. Sometimes it takes a few doses to work at all. We will see.
Ok, I'm going to take another nap. Jared gets to sit in the chair again in a few more hours.

July 23, 2009

The last few days haven't been great at all. I'm having a very hard time finding a place for Jared to be moved to. The hospital is pushing me to move him, they wanted him out of here last week or something. Other than nursing homes no one will accept him. The rehab hospitals don't want him because he can't follow commands. The long term acute care hospital that's close won't accept him because of his insurance, they mightable to give him a scholarship bed in a month or so. I'm currently trying to get the VA to accept him into their hospital in Virginia. I don't even know if he is eligible for those kinds of VA benefits.
There aren't any places exept nursing homes for coma patients to go. I don't want him to go to a nursing home and just lay in a bed for days on end. He NEEDS someone to work with him, stimulate him, try new procedures, try new medicines, maybe even do some clinical trials. But no, there aren't places for people like Jared, they want coma patients that are more aware and can follow commands. No one is willing to try to get him that point.
I'm so frustrated. I know he can recover, I see it in him all the time. He knows what's going on. He's completely aware of his environment, he may not understand it yet, but he's aware.
Basically the medical community has giving up on him, that are done. I'm having to beg them to do the things that they should be doing anyway. His mother had a fit up here the other night, she wound up taking his neck brace off and throwing it in the floor. I don't blame her at all, the nurse was basically refusing to clean him up, he had dried mucus all around his trach.
Jared is doing well. I think he may be starting to follow some commands. It seems like he's trying very hard, I just think his wires are crossed a bit and he can't get the message through yet. I had then take his catheter out. Now he has a condom catheter on, it seems more comfortable. I also had them unwire his mouth and replace them with rubber bands. We discovered that he has thrush in his mouth today, it looks horrible. I imagine it hurts pretty bad. He is still very interested in watching movies, he always becomes more active while he watches them. He keeps his eyes open and focused until the movies stops, then he passes out like it's the most exhausting thing he's ever done.
Ty's first birthday was Tuesday. We had a party for him Sunday. It was an ok party, nothing big. I brought the kids back to the hospital with me Tuesday. Catlin was exited to see Jared, Tyson just wanted to pull on all the stuff attached to him. For the first time our family was reunited, I can't wait until we call all be together again. Jared's mother took the kids home with her, my siter inlaw and brother inlaw will be taking care of them until I can.

July 26, 2009

Things are a little better around here. I'm still waiting to see if Jared can go to the VA hospital in Virgina, keep your fingers crossed.
Jared has been doing well, really well. I talked the PM&R Dr into letting me put Jared in a wheel chair and pushing him around. For the last three days he has been out of bed cruising the hospital with me! The first day (Thursday) I scared Jared's nurse. The nurse got Jared all set up in the wheel chair and we took off, at the first corner I bumped into Jared's aunt Pam. She and her husband walked with us to the window so Jared could look out. After a few minutes I asked if she would mind sitting with Jared so I could run back and grab my camera, she said she would. As I walked back to Jared's room the nurse gave me a confused look and shrugged his shoulders, before he could ask I told him "Jared said the wanted to hang out by the window for a while so I left him there". The nurse about had a stroke as he hopped up to run after Jared, then I told him the truth. I don't think he thought it was funny. This was the first day Jared was able to go outside.
Day 2 (Friday) I couldn't find Jared's nurse when I was ready to take him out. I found 2 nurse aids that were willing to move him with me and we snuck out. The nurse looked very relived to see us when we returned a few hours later, I guess it's scary when coma patients disappear. I can't say that he was happy about the attempt to feed Jared ice cream. Oh, and he also shot a loogie all the way across the hall and made my mom gag, she has a thing about mucus.
Day 3 (Saturday) The nurse helped me get Jared dressed in his OWN CLOTHES! He got to wear shorts, a shirt, socks, and shoes. It was a little tricky but I was so happy to see him dressed. We went to the cafeteria so I could eat, then we went all over the hospital. I even took him outside and took his shoes off so he could feel the grass on his feet while he stared at the clouds. It was hot but I know it felt good to feel the sun on his face. Jared is so active when he's out rolling around, he refuses to lean his head back onto the pillow, he wants to hold his head up so he can see everything. He's not great at holding his head up yet but at least he's trying! He also follows a few commands, again he's not great but he's tying. I'm going to work on some new stuff tomorrow, like holding and letting go of a ball.
I've been very happy and hopful lately, well with the exeption of the insurance/ placement problems. Everyday Jared gives me a little more home and a few more laughs. I don't mind taking care of him at all, I just wish I could be at home with my kids while doing it. I could really be happy if we were all together.
If Jared moves to the VA in Virgina I will not move there. I think I will visit as much as I can, but my main goal will me getting our house, finances, and routine ready for his return. I think that's the best thing I can do for us.
July 29, 2009

Things are actually going well.
I did want to do the CNA thing, but unless it's required I think it's a waste of time. I've learned so much from being here. Most of the time I tell the nurses and CNA's what I want done and they do it. I have all the confidence that I can properly take care of him. The respiratory therapist asked me today if I had a background or experience in respiratory, I guess it sounds like I know what I'm talking about. I swear you can learn about amything on the Internet.
Today they finally downsized Jared's trach. I've been fighting with the Drs for the last week to get them to do it. I guess yesterday I gave the Dr enough greif the decided to agree with me. The poor kid was stuttering when he left here, he said he would ask his boss. An hour later the boss showed up and said he would do it. From the moment they put in the smaller trach Jared has done unbelievably well. They haven't had to suction him one time and he doesn't cough near as much. The congestion in his chest is almost completely gone. I really wanted to scream "I told you so" at Dr. Kid this morning.
The social worker came by yesterday, the VA in Virginia has agreed to accept Jared for 90 days of treatment. Now the problem is getting him there, they want to medevac him there. That costs about 20k one way, they are trying to get the VA to cover the cost. If the VA can't pay for it I sure can't, usually they want you to pay for it upfront. I will have to explore other options if that doesn't work out.
Hopefully he can recover to the point of following commands by the time we leave Virginia. If that happends I can reapply to the place in Georgia for additional rehab. If not then the VA here in Little Rock has agreed to take him, I will allow him to stay there until I can get our house ready.
Jared also qualifies for VA disability, I don't know how much it will pay but hopefully it will keep the lights and water on.
Everday he seems to be a little bit more aware. I think we are going to see great things very soon.

The day our lives changed forever.

2009-11-02T00:06:00.000-08:00

June 24th 2009- My husband kissed me goodbye and told me he loved me. He walked out the door at 6:30am, I rolled over and went back to sleep, never knowing how much my life was about to change.
Two hours later I woke up to someone banging on my window. I peeked out and saw one of Jared's work friends. I smiled and headed to the door thinking "What has Jared gotten into now." remembering the oil soaked goose he caught at work a few weeks earlier.
I opened the door Standing there with a very serious face his friend said "We have to go to the hospital, Jared had a wreck on his motorcycle."... "It's bad." I was stunned. Jared left for work almost two hours ago, why was he on his bike? Then it hit me... he had the accident on the way to work. I told his friend I needed to get the kids dressed and scrambled around looking for clothes and waking the kids up. The whole time I'm thinking to myself "Why didn't he call me?" and "Why didn't he tell someone to call me?". I changed a diaper and left Jared's friend to dress the baby. I kept asking questions, "What happened?" and "Where did he wreck?". The only thing he could tell me was that Jared had a wreck on his way to work and Jared needed family at the hospital.
At some point I realized that Jared didn't call me because he couldn't and that whatever happened was so bad he couldn't give anyone instructions to call me.
I shook as I drove the short distance to the hospital. When I walked into the emergency room my cell phone rang. It was a woman from the police department telling me that Jared had been in an accident and that he was being air lifted to another hospital.
I asked a passing nurse where my husband was and told her his name. She told me "He's on the helicopter! You have to go out there!" and pointed out the door.
I knew exactly where the helicopter was, I had looked at the landing pad many times before wondering about the people who had been loaded into the small helicopters and flown to bigger hospitals.
I ran to the fenced in area and up to the open door of the helicopter. I shook so hard, I couldn't breathe. I remember the flight nurse handing me his wedding ring. I started crying as I stood there in shock starring at my husband. His head was so swollen, his face was bruised, he had deep open cuts on his forehead and chin. He was strapped to a board with a collar around his neck and his head was strapped down squishing it between two pads. He had a tube in his throat breathing for him, blood trickling from his mouth. My worst nightmare come true.
I remember the pilot telling me in such a calm voice "He has a head injury, I have him sedated and he can't talk to you. We're flying him to Little Rock, give me your cell phone number and we will call you when we land. You need to go to Little Rock." I asked him "I can't go with him?". The pilot kindly replied "No. You can't fly with him, you need to find someone to drive you there."
Taking a few deep breaths I asked "Can I kiss him?" The pilot gently grabbed my shoulders and laughed a bit and said "Of course, you can do whatever you want.".
I leaned into the helicopter and kissed him on the corner of his mouth three times. As I pulled away I saw the flight nurse lift her fingers to her mouth, trying to find the words to tell Jared's blood was on my lips.
I knew he needed help... and fast. I turned and walked back to the emergency room. Several nurses were standing there waiting for me. One nurse sat my daughter in a chair and talked to her. Another nurse was talking to Jared's friend as he held my son. As I walked up, a nurse handed me a white plastic bag and asked me for my cell phone. She put a sticker on the back of the phone and told me it had all of Jared's information on it, she also wrote the phone number of the hospital Jared was flying to and handed me the the phone. She explained which hospital I needed to go to. I called Jared's parents and broke the news. I called my mother and asked her to make arrangements for my children and told her to call everyone else.
Jared's friend offered to drive me to Little Rock. We left the hospital and I went to Jared's older brother's house. I told him what had happened and asked him to keep the kids until someone else could get them. I went home and packed a small bag and waited for Jared's friend to pick me up. While I waited I remembered the white plastic bag. I opened it and discovered Jared's belongings. His clothes, wallet, and phone were in the bag. I starred at them until I had to leave.
We drove for what seemed like forever.
I received a text message from the pilot telling me that Jared was stable with good vital signs and a estimated time of arrival.
A little later my phone rang, it was Jared's helicopter pilot. He told me that they had arrived and Jared was in trauma room two. His vitals were good and that the doctors were taking care of him. He wished us well and asked if I would update him on Jared's condition.
We finally arrived at the second hospital. I rushed into the emergency room desperate to see Jared. I had to sit at the desk and give them our information before they would allow me to go back. I remember walking down a hallway, straight towards trauma 2. The curtains were open and I could see Jared laying there with his arms stretched out to each side. There was a drape over his face, and doctors and nurses gathered around his head behind the drape. The nurse guided me past trauma two into a family room. I was told the doctor would be in to talk to me in a few minutes. I waited while our families raced to get to the hospital all of us only knowing Jared had a head injury.
After another small eternity Dr. E came in. He explained that Jared had a closed head injury called Diffused Axonal Injury. He explained the injury was caused by the sudden stop when Jared crashed. The brain floats in cerebral spinal fluid, when he hit the other vehicle his brain shifted sheering the axons around his brain. His brain smashed into the front of his skull causing the frontal lobes to bruise and hemorrhage. He explained that there was a bone in the center of the skull and Jared's brain had pushed into that as well, causing more bleeding and bruising. Finally he explained how Jared's brain twisted, damaging the brain stem on one side. I was told the next few weeks were critical and Jared's injury was potentially fatal. He told me that Jared would suffer some left sided weakness form the brain stem damage. I asked as many questions that I could think of, sobbing the entire time.
When Dr. E left, I went out and asked where the restroom was. A nurse escorted me to the bathroom as I tried to calm myself down.
When I regained some self control I walked back to trauma two. The curtain was closed now. I peeked into the curtain, aching to see Jared.
A doctor was standing over Jared, with his face draped again. The nurse rushed over, her eyes telling me to leave. "I know what your doing in there, I can handle it." .... "I just want to see him." She looked over her shoulder for approval from the doctor, he nodded, and she stepped to the side allowing me to enter.
I walked in and asked if I could hold his hand, again the Doctor nodded. A nurse came in with a chair for me to sit in. I sat there kissing the back of his hand and watching the doctor suture the cuts on Jared's face.
Jared fought so hard with that right hand. He squeezed me and tried to pull his hand up to his face. It took everything I had to hold him down, mentally and physically.
When the doctor was finished they removed the drapes. I sat there for the longest time accessing each injury. I read the dry erase board with all the details about Jared's suspected injuries. I saw the drain that had been placed in Jared's skull and all the freshly sutured wounds.
At this point the details are foggy. I remember the nurses buzzing around and hearing "The Dad is here.". I slowly began to recognise voices in the hall, I knew Jared's family had arrived. I had asked the Doctors to come back and speak to the family and asked that the nurses clean Jared up as much as they could. I was horrified by all the dried blood and wanted to spare the others from that experience.
Family members slowly came in, crying, and taking turns holding his hands. After a while Jared was wheeled to ICU, escorted by his entire family.