So, Holly and I went up to see Tyler yesterday. I mainly wanted to go up, not only to see Tyler of course, but to see what is going on and find out what the plan of action is. It sounded like they were suppose to transport him to the hospital on Monday night again and when I asked the head nurse she thought the same thing. So, just after we got to the care center I talked to the head nurse to see what our plan was because we can't just sit here and watch him get worse and worse. He is not getting enough nutrition for one thing, the only thing he can get down are shakes pretty much, anything else is really tough for him to get down. He has lost so much weight that it is getting very concerning. The nurse agreed that we needed to get more tests done, so she called the hospital and the ambulance to get him transported to the hospital.
Tyler has gotten to the point where it is really really hard to open his eyes, and not because he doesn't want to, but it is just so difficult like he has to work his brain really hard to get them open. And, when he opens them it has to be in a darker setting because he is very very sensitive to light. So, it took only like 15 minutes from me telling her we need to get him to the hospital that they came to get him.
We were in the ER a long time; when do you ever go the ER and have fast service? I have never had a quick/pleasant experience in the ER. They ran some lab work and gave him a liter of IV Fluid while he was in the ER. Finally, around 6pm they got him admitted to a regular room. There we talked to the Dr. there as well as his nurse and aid. At the time we were giving the dr. the run down of what was going on the neurologist came in. So, it was good that we were there so we could explain our concerns and what not. The regular dr. that was there was also his dr last week so she knew the background and what the problems were. What nobody understands is why he was doing so well at the hospital before they discharged him to doing a complete 360 and digressing to a scary point. Oh, another reason why I said let's get him to the hospital was because they coudn't bump up his neurology appointment from the 15th. So, I know there is an on-call neurologist that will be able to assess what is going on. We were lucky to find out the on-call neurologist is the same dr that he was scheduled to see in the first place. The neuro. really knows what his is talking about and tried to explain things to me that I could understand. He could tell that I was really skeptical at some of the things he was telling me and I was able to express my concerns and get some answers.
This is what we do know from the neurologist. The EEG showed no activity of seizures. The MRI though did show that he had a mild stroke that affected both sides of his brain. Although he is not sure if it is significant enough to cause what is going on. It is really hard for him to be able to give us a definite answer as to what happened. He said it could have been from the meds he was taking, it could have been the stroke, it could have been an infection. All of which he has had. We do know that taking him off of his meds last week didn't make any difference in his condition. It could have played a significant role in causing the damage though.
The dr. said that all of his movements and restlessness is all from the brain injury and all of his muscles are reacting involuntarily, and he really has no control over a lot of them unless he really concentrates to make it stop. For example, he was able to lay still while they did the EEG, and he is able to use his muscles for what he needs them to do, but at the same time his muscles are always doing things involuntarily. I hope this all makes sense. I'm trying to explain it the best I can. The dr. called these involuntary movements "distonia" or something like that. He doesn't have anxiety and he can't really control the movements. Such as with his eyes, it is really hard for him to even open them because his muscles there are working over time and are contracting and are tightening like crazy, so it takes a lot of effort for him to use the muscles to open them. He said until we get him to open his eyes for a long amount of time they can't do anything about the crossing because they can't see his eyes if they are not open (duh).
He said that one way of helping his eye muscles is to give him botox injections to loosen the muscles. That would have to be done like every three months if he can't control them to stay open.
As far a Tyler's swallowing goes, that is a bit of a different story. The Dr. is pretty worried about this and said it is very possible that it could get worse to the point that he can't swallow at all. Right now he is even having a tough time just swallowing his own saliva. It is very possible that he could end up with a feeding tube going straight to his stomach. I don't know how that will even work for as much as he moves around. He accidentally pulled out his IV nd it is just because he is moving around so much but can't control it. They did a swallow study this morning but couldn't get much out of it because he can't swallow. The Dr. says this has everything to do with his "distonia". So, the speech therapist is working out a plan on getting him some nutrition, but the poor kid is just starving to death (literally?, maybe). Tyler's weight is down to less than 140 pounds now, he has lost over 50 pounds since this whole thing started. He really can't afford to lose much more, he is just skin and bone now.
Everything that the dr is seeing is neuron damage in the brain, of which cannot be fixed. It is really difficult to treat brain injuries. I am really worried about this, especially because Tyler knows what is happening but doesn't have any control over it. I know he is very scared and frustrated. How would it be to have the desire to drink and eat but not be able to? How would it feel to going from seeing fine to being blind basically. Although his eyes work as far as seeing goes, if he can't open his eye lids he will be basically blind. The dr. said he will be able to continue in his physical therapy and be able to eventually walk on his own, but he will continue to have the muscles moving involuntarily.
I hate for this to be such a downer post, but the reality is that Tyler really is not doing too good right now. I have complete faith in Heavenly Father and I don't want it to sound otherwise, but it is so hard to know what Tyler's future is going to be like. What is the reason for all of this? This is almost worse than the feelings I had when I couldn't get pregnant for so long and couldn't figure out why. But I do know for sure that everything happens for a reason, and I have had many experiences in my life to not doubt that. I just pray that things will get better for Tyler, and that Heavenly Father will help him through this every step of the way.