Cochlear Dilema

Charlie has done pretty well so far with the feeding tube in his stomach. He didn’t go to PT yesterday because they didn’t want him to jiggle too much for fear of aspiration or vomiting. His day involved (starting at 11:00am and ending at 4:00pm)
*Pulling the tube back from his intestines
*Going to X-ray,
*Waiting for results
*Doctor said it wasn’t pulled back far enough,
*Pulling the tube completely out through the nose
*Inserting a new shorter tube
*Going to X-ray,
*Waiting for doctor to say that it was too close to the opening of the intestines,
*Pulling the tube back some more
*Finally some food!!!
Charlie is OK missing a meal or two, because he is so chubby. Just look at his cheeks and double chin. He didn’t storm all day yesterday but then had two last night that each required Ativan.

Other things that are planned are repeat brain CT today at 12:00 to see if the ventricles have decreased after turning down the shunt. Speech therapy will be doing a swallow study Thursday at 12:00. We are waiting to hear if Dr Warren (ear surgeon) thinks it’s a good idea to do the cochlear implants now or not. The dilemma is that his cochleas are ossifying but the surgery is very expensive and a little risky so they are weighing the risk versus benefits. Charlie has to be medically stable and they have to think he will be cognitively capable of interpreting the signal. He is getting pretty stable but the second criterion is difficult to answer because neurologically we don’t know what he will be capable of. If his brain can’t interpret the signal then the cochlear implant is not worth the risk. Yet we don’t want his lack of hearing to hinder communication progress such as hearing and talking. Dr. Filloux, the neurologist, was consulted regarding this question. He said he couldn’t really predict what Charlie’s deficits will be although he is certain he will have some he doesn’t know if it would involve interpreting sounds. They will also be trying to consolidate Charlie’s nighttime medication so when we go home we don’t have to get up every 2 hours to medicate. We’ll see tonight how he likes the change (tranxene and Baclofen are changing tonight and then clonadine tomorrow night)

Good things I’ve seen lately- coughing more, sneezing, kicking both his legs (like an infant does), moving his head away when I try to wipe his mouth, eyes open more often, occasionally calming himself after agitated.