Wednesday, March 12, 2008

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.

17 comments:

Ginny said...

I like that last paragraph...sounds like lots of progress from where he has been!! Keep up the good work, Char!!!

Anonymous said...

that's incredible how alert and baby like he is becoming once again!

Derek & Kelli said...

Angel & Rob:
It's great and exciting to hear Charlie is making a lot of progress. Keep it up Charlie!!! Congrats on the new house--we will miss you in our ward but will for sure keep reading the blog for updates on your cute family.
The Rapp's

Jada Rose said...

WOW that is extremely encouraging! Keep us up to date on the CT scan today, as well as any further developments on the usefulness of the "toe-talon-itis".

Anonymous said...

Sounds like you guys had a busy day. Too bad they cant wean off the sedatives so you could really see how alert he is. Just stay strong!

Anonymous said...

Keep looking at the positive! Charlie is making progress now and I pray it continues. You are such an inspiration!

Anonymous said...

Glad to hear the good news. Hopefully in a little while he'll be pulling the napkin out of your hands and throwing it on the floor!

B

Anonymous said...

Hey guys,

I'm at work again today and thinking even more of you all since there's many reminders from the EMR stuff to the exam room "paraphernalia," to the construction going on in the new office across the hall. Glad to hear some of the good news with Charlie. We will pray specifically for you as you weigh out the decision on the cochlear implants. I'm sure that is weighing heavily on you right now. Know that we are all still thinking of you often over here at RMNA!

Kara

Fun times at the McF home said...

There were so many positive statements in this post...most importantly preparing you guys to go home! I continually pray that things will continue to improve...much love, Jen Grimm McFarland

Kristin said...

Hey guys... love that last paragraph! Glad to hear there are good signs. I'm not able to read daily, but I try to keep up. Just as an fyi... my mom was just diagnosed with spinal meningitis; they think it's viral... keeping out fingers crossed. Anyway, I was with her at the hospital today when they did a swallow test, so I know a little about it (different with an adult though). Here's here blog if you're interested in learning more: http://rodandpaulaspage.blogspot.com/
We're still praying for you and hope all our dreams (and yours) for Charlie come true.

Also, welcome to the neighborhood!
Love, Kristin

linds said...

nice work charlie...i love that he is doing more on his own. good luck with the unpacking.

Anonymous said...

GO Charlie!! Hurry home and keep on improving. Many prayers sent to you from massachusetts!!!

Anonymous said...

WHen do you get to take Charlie home? I am happy that he is becoming more alert. He is really a cute little guy!

Roxey said...

Praying for decreased ventricles.... I love the improvements too!

erin said...

I am so incredibly proud of all of you! I love the pictures in the last post of Charlie in his new ride. What a cutie! Rob- I will stand behind Charlie and his toes mainly because I am the recipient of them as well. We are unique individuals with warm big toes.:) I love to read about sweet Charlie’s progress. It makes me smile. Hang in there!!!

Jay said...

I will tell you the little man looks great.

Anonymous said...

Charlie,

Even though I haven't posted in a while, I am keeping up on all the posts! I am happy to hear he seems to be more alert. I hope you get to come home soon, espically since the weather is getting nicer... That can make anyone feel better!!!

Love,
Jamie