July 15: Day +13

Whew. L-O-N-G day.

I'll try not to tire you out with it as much as it tired me out.

It starts with me armed for the morning rounds to ask to start defibrotide on Bella immediately. Her bilirubin count was 1.1. This is up from .5 on Monday. The clinical trial the drug is administered under only allows for the drug to be administered if the bilirubin count is 2 or greater, so no dice. So I look blankly at the docs and say, "So I have to wait and watch my daughter get sicker before she can get better?" to which the HEAD of the ICU docs flips off, "Call your congressman."

No kidding.

Luckily it was EARLY for me and I was not yet at full steam otherwise it was gonna be ugly.

Can YOU think of a more cynical, flippant, INSENSITIVE comment that you could have said at that moment in front of 20 other health professionals? She's no longer on my team. I will tolerate her till her rotation is up because she is the attending physician in the ICU, but oh man, there are things I really want to write right now...

That all went down within the first 15 minutes of arriving at the hospital. Next up? Surgery. The doc who did Bella's first two lines is on vacation so his associate will be operating on Bella. He is VERY uncomfortable with putting in the G/J tube because he doesn't want to injure Bella's skin in the process. Hey, that is cool, but I was surprised; I thought surgeons had test pilot bravado... not this guy. So, for the next hour, it sounds like it's off the books. No big deal, other BMT kids are not eating at day +13; they are still on TPN, so no worries.

Somehow, just before he comes in to see Bella for pre-op, the BMT docs corner him and ask him to reconsider the G/ tube. So, he ends up in our room at the same time anesthesia, the BMT docs, and nursing are there. I give him a pep talk about how strong her abdomen skin is and that it is already covered to help protect the site from injury, so he offers, "If it's easy we'll do it, if it's hard, we won't." Fair enough.

In the mean time, the Nephrology resident comes in to talk about Bella' kidneys and what is going on with them. Wait a minute, weren't we focusing on the liver just a couple of hours ago? He explains that if things don't get better, we might have to go on dialysis to help filter some of the unending fluid buildup occurring in Bella's body. So, the Hickman they put in needs to be a bigger size to potentially accommodate dialysis pressure. Okay, fine.

We head to surgery and I am allowed into the O.R. at the end of the procedure to install a special dressing to help keep the wound site clean. The view when I walked in was so bad. They were so afraid to hurt her skin, they didn't clean ANYTHING off her. This is good on the one hand, but what I had to clean up... it was graphic and rough. It looked like a crime scene. I'll spare the details, but suffice to say I spent a chunk of my time in the O.R. cleaning up all the blood and betadine that she was bathed in. I just couldn't let them bring her back to her room looking that way, especially with Ang and my mom waiting for us.

So, we spent the rest of the afternoon cleaning and changing Bella's bandages. Luckily, Ang took the afternoon off so we could work together, otherwise I STILL might be cleaning. Bella's skin is hanging in there. It could be a lot worse from a skin perspective.

Her counts?

WBC = 2,200

ANC = 1,400

Good growth each day now! If we can just get Bella's liver to behave... PLEASE pray for NO VOD. This is a big one. Them chemo has really hurt Bella's kidneys and liver, and we need a miracle... and I need some sleep. More tomorrow.