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!
I know i am being very repetitive, however i hoping for easier days for all of you. Ezra is such a trooper, he has the strength of a thousand men.
ReplyDeleteHair, no hair, still a beautiful and soon to be very healthy boy, my prayers are with you, stay strong.
ReplyDeleteRobin, Evan...We think of you and Ezra and have you all in our hearts. Can't wait to finally see him in shul running to the lollipop man and enjoying himself! Keep on posting and being the amazing parents that you are...
ReplyDeleteShelly Winchester
You are all amazing - am reading the blogs and following Ezra's incredible journey every day - sending you the most positive wishes!!! : ) Teisha Bader
ReplyDeleteI'm following your very familiar story and always praying for Ezra. That mucositis is a miserable thing...When my son Eli was in for his BMT we thought the IV pole resembled a futuristic robot and we named it Spike, and he would make up songs to the beeping melodies of the pumps. Amazing what we do when faced with these situations. As far as the hair loss, it helped Eli to gather up his locks into a baggie with the idea that we'd sprinkle it outside eventually for birds to use in their nest-building. He liked the thought of baby birds using his hair it to keep warm. Lots of love to Ezra :)
ReplyDeleteThinking of you and Ezra and sending more toys his way ;) May you have a restful and uneventful Shabbat this week.
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