While I didn’t get much sleep last night, I wanted to finish this update and explain what is going on at this point. In case you missed it, Gavin came home last night. He could have stayed longer but we needed to see how he will function back at home. He is drinking and keeping fluids down and that’s a big thing. He’s also drinking Boost for now, in place of solid food.
While it may seem strange that a child going through what Gavin is going through has been released and sent home, it really isn’t.
In many cases, there isn’t much that can be done for an autonomic disorder. I don’t know a great deal about the intricacies involved but I think that it’s one of those things where you try and treat the symptoms. For example, in Gavin’s case, one of the major problems is that he can’t maintain his blood pressure.
One of the only things we can do is provide him with a medication that helps him to retain water and increase his blood pressure. We started this yesterday and it seems to be helping, although he hasn’t had any solid food. The belief is that for some reason, Gavin hit a cycle where he couldn’t maintain his own blood pressure. In this case it was far worse than what it normally was and so he needed to be hospitalized in order to restabilize him.
Now comes the good news/ bad news.
The good news is that Gavin seems to be stabilized at this point. He’ll have some solid food with lunch and we’ll see how that goes. He could very easily end up back at the hospital. Hopefully not….
The bad news is that we don’t know for sure what triggered these events. The very real fear is that Gavin has hit a point in his neurological decline, that this is going to be the new norm for him. In the past, when we have hit one of these points where everything changes for him, it’s been sudden and completely unexpected. Think about the loss of both his immune system and reflexes. He has developed problems with his feet and lost muscle tone and control over his tongue. The list is longer but there are the big ones.
We are very concerned that what has transpired over the past few days is going to repeat itself eat time he eats. If this is the case, everything in our lives will change. He will likely spend a great deal of time in the hospital and school is going to be very, very challenging. We will likely have to have him taught at home, via an edition to his IEP.
If this is indeed the case, I don’t know what we are going to do. 🙁
I have so many questions that don’t have answers. Why now? What is the underlying condition that ties this all together? Is this going to get better or worse? What will happen next? When will the next crisis occur? How far is he going to decline?
I was talking with my mother-in-law the other night about what was going on. Apparently, Lizze and I aren’t alone in our fear of the future. With all the unknowns and questions that remain without any answers, one stands above all the rest. The one question that we need the answer to but at the same time, are scared to death of, will remain unanswered.
Are we losing our son?
No one has the answer. We know that he is slipping away but how far will he slip? Where is this journey going to ultimately end up? Do I have the strength to deal with what may be around the next turn? I don’t have the answers, just the never ending fear of discovering what they are.