Today was a great day, in that Hana was able to get out of the room quite a bit. Last night Hana was awake from midnight to 4am, so I was also awake from midnight to 4am. We decided that she is getting her days and nights confused so we had to work hard to get her up and keep her up! She has her PT/OT, then pre-school then blood work which they were fortunately able to draw from her IV, then a nap. After her nap her nurse was able to go with us for an hour and we took Hana to the outside garden and fountain and then back to the model trains. Hana was even motivated to do quite a bit of standing! I haven’t seen her that happy since we got to the hospital! Later in the day she took some nibbles of cheese puff, grilled cheese and mashed potato. She took a couple of tiny sips of milk.
It was a bit difficult today (other than being tired) because Hana vomited five times. More than half those times was right after she got her medication, persantine. Now they are a bit worried that her Berlin Heart is not filling completely filling with blood for each “beat”. More important is that it is emptying each time and hers is doing that. The incomplete filling could be due to being dehydrated from throwing up so much. They are also watching more carefully the pinpoint, white “clots” in the Berlin Heart. These have gotten more frequent in the last day or so and if they suddenly get big or disappear then it could mean a potential stroke for Hana.
But overall, she is still doing great!