He had a pretty good night, only waking up two times. He had a quick nap this morning after clonadine then woke up with quite a lot of gas. He has been a little fussy while awake but he does calm every time he is held with a bum pat. Today we are sort of in limbo while waiting for GI to make a decision. If we don’t see them today they are supposed to tell Dr. Such-Neibar what they think. The decision is to either try the venting g-tube or go straight to the g-j tube. I think GI is waiting for the supplies to do these options. In the meantime, I got a list of his current med list for those that are interested, see below
Methadone- pain-tapering off over the next 6 weeks
Miralax-stool softener
Zantac- stomach/reflux
Keppra- seizure
Baclofen- muscle relaxor
Prevacid- stomach upset/ reflux
Tranxene- calming, sedation
Erythromyacin- help empty stomach
Neurontin- brain stabilization
Suppository- bowel emptying
Phenobarbitol- seizure
Melatonin- sleeping aid
Clonadine- agitation
Ativan (if needed) agitation
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12 comments:
Thanks for the update, Angel. The med list is impressive - love knowing the purpose of each one.
Thanks for the fun party pictures - hope Rob enjoys his share of the cake. Also loved seeing him hold up his cute little red (sort of) head. Looking forward to some quality Charlie time tonight.
G-ma C
wow, that is an impressive med list. its amazing you can remember all that...i could not. we were SO excited to see charlie holding up his head. what a big charlie step. still praying for baby charlie and fam every night.
The picture of Charlie holding his head up is so cute, but especially encouraging! Good work Charlie.
Looks like you should be a pharmacy! I thought we had a long list before transplant, but looks like you beat us. We have been on a few of the same ones: Miralax, Zantac, Prevacid and Erythromicin. Throw is a few growth hormones and red blood cell producers and our list was complete. Good luck and I am sure that you will do a great job when you get home.
One good thing is you don't have to worry about the flavoring at the pharmacy for some of the meds because he won't be tasting them and at least they are all giving in the g-tube so you don't have to worry about something happening.
My vote is for the GJ tube! Good Luck.
it looks like you'll need to get an XL one of those "day of the week" med holders ;)
i'd probably be agitated too if you made me take that much stuff everyday. but really, modern medicine is pretty cool to figure out he needed all of that...
So will he need all those at home still?
Yes Charlie will be taking all of these meds at home at 6:00, 8:00, noon, 2:00, 6:00 8:00, 10:00 and midnight.
Wow...that is quite the regimen...for you and for him!! You guys really are super-human! No wonder Britt has always liked playing a super hero...he has super hero genes!!!
You are truly amazing people! I know you will be just fine at home with the help of all of your family. I like what Ginny said that Britt has super-hero genes! I hope Grandma Cheryl has a great night tonight with Charlie. I know she has been training for the bum pats! It is incredible what we can do when we know it brings relief to someone we love! Have a good night!
Connie
You're the best! Love and prayers!
Rox
It is great that you are getting ready to take Charlie home. I am soooo very happy for you. The med list is long, hopefully he will not need all of them as time goes on.
Love the pics of him during therapy this week. What a strong little fighter you have there.
God bless you all and give you strength to keep, keepin on.
Any GI guy? How's Charlie feeling with the new old formula?
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