Recovery Day 5...
is in the books. Ian is doing fantastic. The surgeon and doctors told us today he is pretty much home free now as far as liver function goes. It is running and firing on all cylinders. Very exciting. That let us focus more on the road, which looks a little something like this:
Friday or Saturday, Ian will be moved from PICU up to the transplant floor (sixth floor, I believe) so long as things stay on the path they are on now. He will stay there for 2 to 4 weeks, depending on how he's doing. In another two weeks or so, he'll have the staples in his stomach and his JP drain (it is a tube that has a suction bulb on one end and the other end is located inside his tummy to pull fluids and stuff from the site... it is quite simple in concept but incredibly effective) removed. A short while after that, he will start to become eligible to be discharged.
We will plan on him, Elaine, and Livy all staying here in the area another month at least after that as they'll be monitoring his Prograf levels to keep him at a certain point. He'll take Prograf the rest of his life (it keeps him from rejecting his liver).
Ian also has an NG tube (runs into his nose and down to his stomach) through which they pass all the medicines and calories as needed. Dr. Heffron told Ian that as soon as he learns to take his medicines orally and keeps up his nutrition, he can have that removed. We are using that as incentive to get him to take his meds by mouth. He has always been a champ at taking meds, and he hates the tube, so we think we can get rid of the tube shortly after New Year's and maybe even a bit before. He's taken most of his meds since then by mouth instead of through the tube, and his appetite is finally returning as we swing him to his old schedule. We're keeping fingers crossed. I think it is possible that we may want it gone more than he does. :)
He got to get down from his bed twice today. The first time, he curled up on me and took about an hour and a half nap. I also snoozed a bit (hard not to do with a warm little body snuggled that close). The second time, he didn't want to eat dinner unless he could sit in one of our laps. We let him, and he was a champ at eating.
Not much else to report today... OH - I got Mr. Puppy for him to snuggle tonight, hoping that helsp solve some of the sleep issues that he is (and therefore I am) having. I'll try to mention how that goes. Mr. Puppy, for those who may not know, is a stuffed dalmation that I picked up in Boise, ID, quite some time ago. Ian has laid claim to it, and it is his version of a Teddy Bear. I have no issues with it. He's also not as attached to it as I feared he might be, but it is also a definite source of comfort for him.
More on the morrow...
Labels: Baby Ian, biliary atresia, Ian Herbst, liver, liver disease, transplant
2 Comments:
Brett,
I just arrived at your site thanks to Allison and her link to your facebook account. It's amazing how many people she has run into since creating that account a few months ago. Maybe one day I'll have get one. In any case I just wanted to say hi, and let you know our prayers are with your family. His recovery sounds very encouraging.
Nick Patton
Brett, I am so happy to read about Ian's progress! It sounds like he is quite the fighter! My niece has spent a lot of time in the hospital with her son and I've seen how exhausting it is. I just wanted to stop by and let you know that I'll be praying for you. I'm also going to give my niece a chance to "pay it forward" and tell her a little about your guy. She'll be happy to say some prayers for him! Keep letting us hear the good news! Thanks for sharing your story. I know it's hard and therapuetic at the same time. Bless your family, and especially Ian!
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