Tuesday, March 25, 2008

Pedialite Rules! :)

He had a really good day today. Two times he was awake with eyes open and not very upset for almost an hour each then went back to sleep. He has stayed on pedialite all day today slowly increasing the volume to 40 then if that goes well they will change to ½ pedialite and ½ formula at 2:00 in the morning. They have now added erythromyacin to help move things through his gut and we are doing a suppository every night to make sure there is room to move things through. I guess last night was the first BIG poop he has had since surgery so we gotta get things movin.

Because he was not having formula today, Neale (OT) felt like it was safe to take him to the gym and jiggle his tummy. It had been a long time since he had been out of his room and he needed to get his body movin. I love watching in the gym because I get to witness the small things that I didn’t know he was capable of. I wish I had my camera because it’s difficult to explain but I’ll try…Today he was in a big barrel made of mats and Neale rolled him barely onto his side and he would arch (posture) and kick his legs to get back over to his back. It was the arching/posturing that got him over but Neale said it was purposeful and he kicked his legs figuring that they were supposed to be helpful in that situation. Coop did it 5 times in a row and was mad every time. I was so proud of him! Neale and Janine both commented on how he is calming himself more quickly where before they would move him it would take a long time to get him relaxed enough work on the next skill.
I am still excited about the implant however, Jason Norby, our audiologist, came by to talk a little more about the conference. He said the committee all agreed that because of the multiple disadvantages Charlie may face he needed to have every chance possible for interaction and imput. He also said the committee felt one implant was going to be challenging enough that they did not want to try two. The one implant he will receive will probably not be able to be inserted through the entire cochlea because of tissue build up so the electrode connections will be more limited than a typical implant. Another difference from typical implant patient is that Charlie will not be able to communicate if he can hear the signals or if they are too loud/soft because of his decreased mental status so the audiologist suggests going with a model that can give signal feedback so they know the signal is getting through. He will come by tomorrow to go over different manufacturers and models. There will be extensive training afterwards to program and teach Coop how to process the sound but this will not start until we are a little more stable and alert.

Coop and I were lucky enough to see Dr. O today (-just a “social” visit, not because Coop has any more infections, thank goodness-) while he was in the hospital for a meeting. We always love seeing/talking to him- the reason I know Charlie does is because he was very calm and was even twitching his eyes as if he were having a pleasant dream the whole time Dr. O was in the room. I updated him on the implants and he said there may be a need for some additional immunizations prior to the surgery so Jason is going to look in to that. Thanks for the care and concern while off duty; it means a lot to us.

8 comments:

Anonymous said...

Sounds like everything is going your way! Charlie is making huge steps. I am so glad to hear the Dr. want to give him every chance they can and are being proactive. I check your website everyday when I get to work and right before I go home. Still praying for a miracle....Phil 4:13

Michelle from Missouri

Trish said...

Great news! I am happy to see Charlie working so hard and yet sleeping so well. Nothing is as rejuvenating as a good long nappie!

Meghan said...

i am so, so happy right now. i wasn't on at all last night and felt so out of it. i am THRILLED about the implant. i think it's going to be awesome for him. and i love the big OT news. the kid has a lot of fight in him. he is awesome. you guys are awesome too. hang in...

Anonymous said...

Erythromycin is an antibiotic. Why does Charlie need it to help move things through his gut? Are they concerned about a stomach infection?

Charlie Cooper said...

The doctors are using this antibiotic for it's side effect of motility not for it's antibiotic properties. I think the amount is significantly lower when used for this purpose. This is what Dr. Such Neibar usually uses for brain damaged patients instead of the typical Reglan.

Roxey said...

Yeah!! I'm sooo glad you had a good day! I hope today is good too....does Coop get to do more therapy today? Much love and prayers from us!

whitney said...

Hooray for Super Coop! He has come so far in 2 months, he is working so hard. I bet you loved seeing him purposely move during OT. What a great kid.

Tammy G. said...

Kayden was on Erythromicin for about a year. It was a low dose, but they have found that it aids in digestion faster and does not. It helped us for a long time. I can't even remember why we went off of it. Have they thought about using miralax instead of suppositories? Just wondering. We took miralax everyday for 2 years. I got to the point where I knew when he needed it increased and when he needed me to stop it for a few days. All we did was just mix a little bit with his night time meds every day and it seemed to help him alot. Since we have been transplanted we haven't needed it but we did for a long time.

Good luck with the feeds! I know what it is like to try and figure out what to feed them that will work, but you will soon get the hang of it and it will become second nature. You are doing great. If you have any questions with the feeds or the tubes or anything let me know. We have been there and are still doing it to some extent.

Tammy