We learned a new phrase....

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.

And the answer is????.....

Yesterday we got the biopsy results back- Chronic Rejection.

Isn't that a delightful diagnosis to be given???

So, I hop over to the web and find this definition on medscape.com:

"Compared with other vasculzrized organ grafts, chronic liver allograft rejection is uncommon, most likely due to the unique immunologic properties of the liver allograft, the regenerative capacity of the liver, and better recognition and control of acute rejection. The incidence is approximately 1 % to 3%."

Whole article can be found here.


Are you kidding me, 1-3% chance of getting this. Lets hit the home run in rareness yet again...the rare liver disease wasn't enough...let's get more ambiguous with rejection.

The plan is to treat him out patient with immunosuppresent cocktail and hope the rejection will reverse or correct itself. This can take 6 months to 1 year.

I have no idea where this road will lead. I really had thought this journey was over.

So, the plan is to get Big Bird out of hawk and treat at home. At least he has his own place ;-)

Back to square one!

After 6 Thymogobulin treatments, we are back to square one. He is not responding to treatments. They readmitted him on Monday, May 11. Another biopsy was had yesterday and we are awaiting the results.

After some blood cultures, an infection was found in his port line. So, they removed the port line and have been dispuring large amounts of IV antibiotics to clear up the infection.

Where o' where do we go from here???

I just pray that they are able to reverse the rejection.

One the road to recovery?

On Sunday, Big Bird was released. After a second liver biopsy, it was determined that he was in full blown liver rejection.

We believe the rejection started with a UC flare two weeks ago. Anyone who has any knowledge of UC or any type of IBS will understand that when you have an active flare, things tend to go right through you. So, this is what we think may have happened to his anti-rejection medication.

The rejection was diagnosed on Friday morning. They immediately started him on IV steroids and Thymogobulin. His bili got up to 18, and his liver numbers were steadily climbing. Migraines were also an issue along with nausea. By Saturday, we started to see some improvement in liver numbers. Sundays' blood tests had his bili down to 14-so after his 4-hour Thymogobulin drip he was discharged. He has to go back to clinic on Tuesday, more blood tests and another 4-hour Thymogobulin drip. They may even repeat the IV drip Thursday and Monday depending on blood work.

There was some liver damage, but since the liver is a remarkable organ, they are hopeful that with turning the rejection around that it will self correct.

So, we keep are fingers crossed that we are indeed on the road to recovery.