I’ll continue the pre-story later.
We are now at the Ronald MacDonald House in Gainesville. It’s a great place, albeit no WIFI in our room!! But Jael has already made friends with a wonderful little 3 year old boy who is here with his family. His sister is the one who is sick. Jael and Germaine played out on the park and had a wonderful time. It was great to see her just playing and having fun. Another perk of the RMH is that I just got a chair massage!!!! It was wonderful. I feel so relaxed.
Last night I noticed that Jael’s bandage on her port was open on the top. This means that anything can get in there and cause an infection. This is especially bad since her white blood cells are so low. I taped it and decided we would be returning to the hospital today to get it redressed. Her port goes directly to her heart, so we don’t mess around with it. This would only be her second time changing the bandage. The first time was horrible. She screamed and cried the whole time. Very traumatizing for all of us. I knew going into it that it would be bad…and it was. One nurse volunteered to do it, but then quickly changed her mind when I told her about her reaction last time. Fortunately, the other nurse was up for the task and did a great job. Jael screamed and kicked and cried. It was horrible again. But as soon as it was over she was fine and we headed to Dairy Queen for her promised ice cream cone, with a spoon.
Our biggest struggle right now with Jael is getting her to eat. Jael has always been a great eater! She could eat two pb&j sandwiches and then ask for another. When she and her cousin Millie would eat together it was hilarious…Jael would be done in less than five minutes and Millie would still be struggling to eat it all 30 minutes later. She had a great appetite. Now…I feel fortunate if she will eat a bowl of cereal, which seems to be the only thing she is willing to eat right now. Besides the ice cream cone with a spoon. And she never even gets to the cone on her ice cream. I guess I better get to the store and get more Trix (ugh! – thanks to a nurse at the hospital, now all she wants is the red cereal) and almond milk (helps to make me feel better about giving her Trix for three meals a day).
Tomorrow is another day of going to the clinic to get her blood drawn and hoping that her white counts are high enough that we can start the stem cell harvesting.
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