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.
-Rob
6 comments:
I am so happy to hear about the progress, even though it may seem small. Keep hanging in there, and know that we are still praying like crazy for that cute kid!
Jen McFarland (Grimm)
Rob,
I'm so excited that they are thinking about moving him out of icu!!! I don't know if you know this, but darin has an older brother named brian. He had menigitis (however you spell it) when he was a baby also. He was so sick that he wasn't moved from the icu for over a month!!!! He is still living and in his 30's now!!! So i know that you may not see it this way, but what a HUGE blessing that your sweet little baby is doing good enough after being there a little over a week, that they feel they can move him!!!! I'm praying for you every day!!! Mykelle always asks how charlie "pooper" is doing!
i'm still hoping for a few more picu days... but if he heads to neuro, that will be good too. i think its worth noting that the lady in the picture is todays nurse, not the wife or mother... i am glad he had a fairly uneventful calm day...
and the posts aren't a bore. we all like to hear any changes. love you guys.
Thanks for the update, Rob. Even though I saw the baby a few hours ago, I still need to know how he is OFTEN!
While at work today, I've had 4 or 5 people tell me stories about folks they know who have had meningitis and made miraculous recoveries. I get the goose bumps and then tear up every time. I know we will soon be sharing Charlie's miraculous story too.
Love you all always!
Grandma Cheryl
im an israeli guy living in canada. 36 years old have a good job a masters degree in psych and going to fulfill a lifelong dream of starting vet school in sept 08. when i was two i had meningitis i did loose my hearing but deal with it very well. my partner can hear and so can our 7 year old. so what im trying to say is most chances are that in a short while charlie is going to be the kid he was before. maybe there going to be some minor adjustments but he'll be his old self i know.
keeping my fingers crossed for charlie
jacques.
Your family doesn't know me, but a friend of mine linked me to this blog. Please know that my family and I are praying for your family and your beautifuly baby to come out of this stronger and with the best results. Much love from our family to yours...
Post a Comment