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