I feel like I’m standing at a podium with a microphone….high pitched squeeeelll….”Is this thing on?” Tap, Tap, Tap “Testing, 1,2,3…” clears throat….Welcome ladies and gentlemen to the blog of our life. (*chuckles*, that sounds like the lyrics from Zooey Deschanel’s cotton commericals….”Fabric of Our Life“)
I’m new to the world of blogging. I’ve been known to keep a hand written journal or two, but it’s been suggested to me (and not just by my family….) that maybe I should share my life experiences with the world. So here I am. Are you ready? I think I am.
Today is Day 65 of our hospital stay. That’s right, I’m typing from the confines of my son’s hospital room. (Thank you Melissa for the use of the laptop, otherwise I just might have lost my mind sitting here.) David is 5 1/2 months old. On August 18, he received a liver transplant. Surgery and recovery went well. Better than well, he rocked!
Then he got sick.
Septic shock sick.
We almost lost him sick.
So here we sit in the ICU at Children’s Hospital in Cincinnati. We’re old friends with CCHMC, 2 of my older boys have served time here as well. (Please read the “Introductions and Life goes on…” pages – I’m sure it will answer some of those questions you’re asking.)
David has a virus called Adeno. He is immunosuppressed from the transplant so the Adeno had a field day with his immune system. The treatment? Lower his immunosuppression, administer an antiviral drug called Cidofovir, replenish his antibodies with IVIG and wait.
Are you still there? Because we’re still waiting.
While we were waiting, an extremely rare problem developed. An extremely rare, extremely painful and potentially life-threatening problem, Graph Vs. Host Disease.
As if he needed any other problems!
GVHD is relatively common with patients who have had bone marrow transplants. So common in fact, that they are prepared for it to happen after the bone marrow transplant. Not so much with single organ transplants such as a liver. Our team firmly agrees that with the over 500 liver only transplants that have been completed at this hospital, our David is the only one to develop GVHD.
A little about GVHD – did you see the movie “My Sister’s Keeper”? Read the book? If so – then you’ve heard of the painful rash that develops. It can be as severe as a 2nd degree burn. Fortunately, he didn’t get as bad as that.
So what is Graph Vs. Host Disease? Well, basically, cells from the donor organ (graph) attack the immune system of the recipient (host). This causes an inflammatory response like the skin rash. It can also attack the gut (it did), the eyes (it did) and the lungs (it didn’t). Treatment for GVHD? High dose steroids, high immunosuppression. Do you see the contradiction in care? Treatment for Adeno and treatment for GVHD are the exact opposite.
We’re still waiting……
So while we wait, allow me to do 2 things:
1) Tell our history….
2) Share our future..
I’d sure appreciate the company while we wait.