Thanks everyone. I visited yesterday and became very emotional afterward.
He is making good progress. He is scheduled to be transferred out of the ICU, possibly as soon as today. He will remain in the hospital on the pediatric wing until at least he is weaned off all the narcotics, primarily Versed and Fentanyl. They are titrating him down by half the dose each day. It will take eight more days for him to fully wean. This gave us an idea of just how much of this medication he has needed. He is on methadone maintenance because he became addicted to the Fentanyl. He went through all of the symptoms associated with withdrawal from opiates. It was bizarre to see and I truly hope that years down the line he does not develop an addiction of choice due to this experience.
His parents are thinking he will start his physical rehab at his current hospital and then transfer. The issue is his medical needs. He requires dialysis in addition to physical and occupational therapy. There is also a question about whether he needs cardiac medication for atrial flutter. Apparently some rehabs are leery of accepting pediatric patients with medical needs of this nature. He is a week or so away from a full time rehab at the minimum. Psychiatric care is not on the radar yet which I think is a mistake. But both his parents want him to receive it so that is a good sign that this will not be swept under the rug as I feared. I suppose we do need to make sure he is capable cognitively of participating in psychotherapy.
I may be wrong but I feel like yesterday we got a good sense of where he is at the present time, before time and therapy help him make more progress. He is slower and more confused due to the sedatives, but a clearer picture is emerging.
He recognized me, we talked, he was even his usual funny self in many ways, cracking jokes. He can identify shapes, and he can read. But despite all of this good news, he is definitely different. He has sustained a brain injury, it is very obvious. His eyes don't focus, he is very slow in his movements, he struggles to hold a spoon and feed himself. As a special education teacher, I recognize what I am seeing as a moderate to severe cognitive impairment. This is beyond memory issues or impulse control alone. He will improve, he will get therapy, but there IS definitely impairment and some of that impairment may be permanent.
His voice is very quiet and he seems to have almost gone back in time to a much younger version of himself. He is frightened and vulnerable. He asked us if his leg was going to be cut off. I suspect he may remember the doctors discussing this. We assured him it would not but he needed physical therapy and some surgeries. We explained the dialysis machine. He is very confused still. He understood that it is for cleaning his blood until he can pee on his own better.
He seems to be aware that he cannot do things that used to come naturally to him. He was frustrated when he could not handle his spoon properly and dropped some food on himself. He doesn't understand what a miracle it is that he can feed himself independently at all this soon.
Some of this may be the sedatives but they have already been reduced so much, I honestly believe we are seeing his new baseline. I am so grateful he is alive. I am very aware of how lucky he is, and how lucky we are as his family. But he is not the same. He has damaged himself very seriously, and for that I am very saddened.
My wife is very insistent that once the sedatives fully wear off he will return to his previous level of functioning almost instantly. I know better but I am staying out of her process. It will be very difficult for her.
