TJ Update Sunday: TJs clarity and communication with us continues to improve. The doctors changed his meds to better treat the withdrawal and that seems to be working, they also added something to help him sleep at night, and that seems to have helped last night. He has a bit of what they call ICU Psychosis. It happens in seriously ill children when they have been sedated and asleep as long as he has. His body is confused his mind cant tell real from dream all the time. He is still very sedated, and unfortunately restrained. Today he became aware and vocal about his displeasure of being restrained, which is a good thing from the perspective of hes aware... not such a good thing because hes still not fully aware and he could really hurt himself if he wasnt restrained. I hate to see him restrained, but I agree 100% with it. It keeps him safe, and as his mother, that is my priority. He must be safe. His eye. :( his poor eye. the inside lining is very swollen and enlarged, We are struggling to protect it. He wants to rub his eye and head against the bed. When he does. it irritates the eye even more. I dont know, and frustrating but neither do the doctors. We keep it lubricated and covered and we sit and watch as he sleeps so he doesnt rub. The PICU assigns us a sitter now, who sits and watches him to make sure he doesnt rub and injure himself. That has given Randy and I a bit of a rest. The last two nights Ive been up til about 4 AM.having someone we can rely on is nice for this. His right eye is actually improving a lot. He is now following us with it, and focusing with it. He can see us at the foot of his bed with that eye. It is his left eye that is the one that is in question. Im not very hopeful that he will have vision with it. They tell us they wont know for months until all the swelling goes down... but Im preparing for him not to have vision in his left eye. Only God and time will tell. I will be happy with a healthy boy coming home. We can adapt and will learn to work around this if need be. His groin and lower abdomen... we arent sure there either. The swelling and pressure seem to be subsiding. They are allowing him to drink with a straw which is a step up from the sponges he had been allowed. They even let him have a little bit of apple juice today. Time will tell on both of these areas. The doctors arent promising us anything and we know worst come outcomes are still on the table. We hope and pray God continues to heal his little body and over the coming months he continues to improve. His heart... Rejection has become a real concern. They will probably do a biopsy this week, I wouldnt be shocked if he went down tomorrow. The biggest question is how to protect him now. The main immuno suppressant is the suspect for why this has happened. The alternate that they use, is the same type of drug and the team is highly concerned that the use of either one would cause the same condition all over again. Im not sure what they are going to do about that. They did start him on a high dose of one of the secondary immuno suppressants. But its not one that will prevent alone, it is always used in conjunction with another immuno suppressant. Kidneys are still OK although his numbers did get a little high today, we want them lower. They are going to increase his fluids and see if that helps. They will continue to use the Plasma Pheresis to treat his blood condition. That seems to be helping and working. They dont want to change this at all. The damage and injury from his stroke and brain bleeds are not known completely BUT, we have seen some great signs. He is speaking very coherently to us the last 24 hours. Hell wake up agitated and as he calms will be very clear with what is frustrating him. He asks and knows me and his dad.. he even asked for his Pap Pap today. *grin* we think because Mom and Dad werent giving him what he wanted... he wanted his legs unrestrained. So he called in the big guns... I want PAP PAP! Apparently its not just Grandmas that kids call on their parents. :) In TJs case, he was going to tell my Dad on me. LOL Its reassuring to me that he remembers his Pap. Its the first time hes asked for anyone not here. He has asked to watch TV, has mentioned his xbox and ipad, his dog, and that he wants to sleep in his own bed. Im happy he remembers and can actually speak about all of these things, they are part of his life before this injury. To me, that means he has memories still. :D He is a sweet kid, even through all of this, he is melting nurses hearts, he thanks them, and helps them when they ask him to. Its amazing to me that he can do that. They are doing a dressing change and rearranging him and as soon as the nurse explains and asks him to help or hold still, his whole manner changes. He cooperates with them.
Posted on: Sun, 10 Aug 2014 18:19:47 +0000
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