I guess somewhere in the back of my mind I wanted 2017 to be the year we didn’t spend any days in the hospital. But these calendar days and years are just a formality we use to organize “civilized” society and they don’t really mean that much to me any more. Who cares if it’s 2016 or 2017? December 31st or January 1st? What feels more significant is if we have been in the hospital 7 days or 7 months. Today is the seventh day in the hospital and it is feeling all too familiar. The routine and nuances are still fresh in my mind. I thought that once we were out of the hospital longer than we were in, it would maybe feel different, but we didn’t quite make it that long.
I have sad news about our friend Karla who got the call for a donor heart yesterday – the heart arrived and did not look good so they had to cancel her transplant. It’s heartbreaking. I’m so sad for her and her family. I know these things happen so it’s not shocking, but it’s still very, very disappointing. I hope they find another match soon. Until then, Karla is recovering from anesthesia in the CVICU. Please keep Karla and her family in your positive thoughts and prayers.
Hana is doing about the same today as yesterday, maybe a tiny bit better. She ate a couple of brownies and then threw up about an hour later. She did not drink quite as much, but we only gave her lactose free milk which is fat free and I’m sure tastes different from the whole milk we usually give her so maybe that discouraged her drinking. She did drink a little apple juice and water. She continues to have several bouts of diarrhea throughout the day. Poor kiddo, she looks so miserable on the potty.
The Infectious Disease people said Hana is definitely not allowed to leave the room, even if she wears a mask and is confined to the wagon, so I guess it’s just these four walls she gets to see for some time. They also came by to reiterate that Hana must test negative for adenovirus twice in a row before they can conclude she no longer needs Cidofovir. They also stressed that this is a slow acting treatment that could take a few weeks. I’m sure they are trying to help manage our expectations. We will only get results on Thursdays each week so if we don’t get two negatives this Thursday than we will be in the hospital a at least whole more week, until the following Thursday. They are drawing the first test tomorrow, after her Cidofovir treatment tonight. Since she still is having symptoms of diarrhea I have my doubts about tomorrow’s test results.
So, we wait. It really has been a piece of cake compared to other times being in the hospital, so I’m grateful for that!