Last night was one of the worst night’s sleep in months. Hana was tossing and turning and crying out. I finally elevated her in the crib more with some pillows and she slept soundly for a couple of hours, which is when I finally was able to get sleep too! Today I felt like I was in a daze!
Around 10:15 they told us Hana’s cath lab/biopsy had been canceled because a child in the ICU needed that spot urgently. I was very disappointed but that is just how things go in the hospital. I’m sure a few times Hana was the one bumping other kids scheduled procedures because she needed something more urgently than they did. Anyway this kind of threw everything out of whack for the day. Eventually, they rescheduled Hana’s cath lab/biopsy for late Friday morning. This will delay her discharge by one day. Now we are looking at Sunday, if everything looks good.
We kind of feel like we are just twiddling our thumbs and waiting. I can’t believe I’m impatient now after all the waiting we’ve done, but the end is so close (at least, I hope). I picked up Hana’s meds at the Kaiser pharmacy and reviewed them again with the transplant pharmacist. The car seat was delivered. We met with the Infectious Disease doctors to go over a few things. I haven’t heard from the Ronald McDonald House yet about moving in. This makes me a little nervous because I feel like there is still a bunch to prepare before we can be ready for life outside the hospital!
Hana has been cranky with GI upset. It’s probably medications causing both. She would only nap while my mom held her and for less than an hour (while I made the trek to the pharmacy). This child needs more sleep! We wheeled her around in the wagon a lot because I was honestly too tired to try to do much else! She did do some smiling today. It’s the first time I’m positive she smiled!
Tomorrow – cath lab/biopsy. Saturday – IVIG therapy. Sunday – discharge from the hospital to the Ronald McDonald House!