The weekend started with craziness and ended on a positive note with Ezra doing well. Saturday morning Ezra woke up drenched in blood from his central line. He was bleeding profusely from his line. We had to quickly get the dressing off, which is a nightmare without floods of blood, and it took several attempts to get another dressing stick. Mommy and Daddy then had to sit for 2 hours holding a bag of fluids on the site to put pressure to stop the bleeding while we waited for platelets to come from the bank. Scariest couple of hours ever. The doctors are trying to find the right balance with his platelet transfusions and are checking to make sure he doesn't have any clotting issues. To all who are donating - rest assured, Ezra is using those platelets.
Ezra also has been vomiting blood from the mucositis and having trouble swallowing, but today he did well and was able to to even eat graham crackers and peanut butter. TPN started this weekend so that we don't have to worry when he doesn't want to eat. Ezra is calling it his chicken soup because that's exactly what it looks like in the IV bag. It also resulted in the addition of this monstrosity of an IV pole in our room, which goes off every half hour at night. Awesome.
The main concern remains the presence of T cells. His counts have remained basically the same over the weekend with some fluctuation up and down. There wasn't much information to be had with the primary doctors away for the weekend. They will repeat some tests later this week, but it seems like we won't really know anything until the time when his donor cells are expected to start showing up in a couple of weeks. We guess even miracles take a little time (said the Fairy Godmother to Cinderella).
Despite all the craziness, Ezra spent the last two days playing and even shooting some hoops. He has adopted a rock star's schedule - up until midnight and sleeping past noon. Tonight he's jamming to the new song he made up called "Sack of Potatoes," inspired by Mommy's frustration at him going limp when trying to get him in his pjs.
Ezra's hair has also been slowly falling out over the past week. His head is still covered, but it is thin. Sad to watch that curly mop head go away.
And we remained fueled up by the special people who made the trek to the hospital to bring us delicious food for the holiday and special treats for Ezra. Thank you so much!
