So, Big Bird calls me, Monday morning at work, home nurse called clinic, she wasn't comfortable with his symptoms of the Vancomycin treatment. So clinic said-you need to come (wtf??? I so was not prepared for an impromptu trip to SA). But, what does Big Bird do on this 2 hour car ride??? SLEEP...butthead is all I can say!
They run the normal myriad of blood work, chest xray. blah blah blah..... And why yes, that is a lovely shade of YELLOW he is sporting. They say it will stay for 6 months to a year and his bili will go up and down this whole time. Yesterday, his bili was at 17. I asked about the LFT, AST etc., but we all got distracted. She did however say there was some minor improvement.
His lovely pic line for the Vancomycin treatments he has to get at home. Hopefully when we go back to clinic on Friday (yes, for the second time this week) they will take the pic line out. That is gonna make for come completely grotesque and awesome pictures.
It stings a wee bit when they change the dressings. He took it like a trooper. Of course, I encouraged them to go ahead and be mean. ....but they like him there?
Yeah...we were not admitted yesterday! We were very happy. It seems it's a crap shoot whether he gets admitted every time he goes these days. They did say, that this was probably an unnecessary visit, but when it comes to "Mystery" boy, they are being overly cautious.
So, the new phrase you ask, well it is DUCTOPENIC REJECTION. He has chronic rejection, but the rejection is starting/stemming from his bile ducts. I found an article here you can go and read if your interested.
So until next time, this was a day in the life of Big Bird.... I leave you with this bumper sticker as sighted on the way to clinic! It just struck me as funny since I keep asking Heavenly Father why he thinks I have the strength to go through all this on to of dealing with my poor Aukee baby.
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