Tuesday, February 5, 2008
Tues Evening :-/
Charlie is continuing to cruise along. No worse for now. Today Charlie's Dad got his much needed therapy and was able to hold him for about an hour. It was awesome. The PICU is still tinkering w/ his meds and trying to titrate to a level that suits him. His posturing is still pretty bad and today he got a visit from the Rehab staff that will help him from here on out. They are some very nice folks and told us that while they are very concerned about his posturing, arched back clinched jaw they said that Charlie’s stiffness and posturing isn't the worst they've seen... "What?"... finally something w/ this disease that isn't the worst a Dr. has seen. What a blessing. He is a bit calmer today than he has been in days past but that is largely in part to the new and increased drugs he's getting. He is off his Fentanyl and Sodium and he should be weaned off his Presidex in an hour or so. They started him on Baclofen that is a muscle relaxer and that seems to help a little more w/ his posturing. He still goes through is agitation fits and then will sleep for a while. His breathing is really hard and all through is nose. They think that his "Neurological Insult" is causing his diaphragm not to cooperate and so he has to compensate by doing some pretty heavy belly breathing. The Dr.'s that weren't familiar w/ his case thought he should be re-intibated. He has been coughing a little more, yeah, and even yawning. If he is able to stay off the PICU delivered meds tonight it looks like we might move next door tomorrow to the Neuro-Trauma Unit where all the kids w/ uncooperative brains go. Should be interesting. The care in the PICU has been exceptional and we'll miss it.
Sorry for the lack of updates today but I just feel like we keep giving the same info over and over again and I don't want to bore. Thank you all for everything.