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.