5/13/18 BMT Day +11 VOD

VOD. Today started off dramatic, we met the team in the hallway for a chat before they saw Reese. My heart was in my stomach, I was so nervous. We have been avoiding the ICU (the PICU actually, for pediatrics) the past couple days (and I would feel so blessed if it stays that way.) We were told that one more thing will send us there.

We found out that steroids are starting and then the doctor wanted to check her weight. She has been gaining about a pound every 12 hours, all fluids that are displaced throughout her body, mostly in her abdomen. We know from the chest xray there is a little fluid in her lungs. They weigh her and she is DOWN a pound!! So we stayed put, in the BMT unit another day. Reese has been adding fluids everyday as I mentioned, and today for the first time she is pretty much even (only 58 mls positive, as opposed to 600 and 1000 the days before.) The next step is to be negative, to start eliminating more than she is taking in. At bedtime she had gained the pound back, sadly, but at some point some of these fluids need to start responding to the meds. She has been on defibrotide for three days now, but unfortunately it can take up to a week to work. Reese is in a lot of pain and everyone is doing their best to help with this. She was barely awake an hour today, mostly just restless “sleep”. Tonight she is having trouble keeping her oxygen levels, and my nurse informed me that if it continues she will go to the PICU where they are better equipped. I’m praying for a quiet night here, with progress in the right direction for my little fighter.
Happy Mother’s Day to all of the fantastic moms out there. We are all just doing the best we can, with the cards we are dealt. There is no more rewarding job in the world, than to make a difference in the life of a child. I’m blessed to know too many great moms to count.

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