Last night was rough with Hana waking up around 2am with a shout. She shouted, giggled and thrashed. She also arched her back, rolled and pulled herself up to standing in her hospital crib. She set off the Berlin Heart alarm. This went on until about 7am. Some time around 6am Paul took over and I got a little sleep. Later in the morning when I was in the bathroom getting dressed I was feeling miserable and cranky. Then I reminded myself that this wouldn’t last forever. Maybe I would only get 3-4 hours of sleep a night for several months or a year but it wouldn’t always be like this. Sure, I was very tired but it was me not letting go of my expectation of getting more sleep than I actually got that was making me miserable. Then I actually felt more energetic and felt pretty good all day (but admittedly, a little tired). I would welcome more sleep but in the meantime it is amazing how our attitude and choices can make a difference.
Hana had PT/OT again and then a lot of bloodwork. They also decided to start IVIG therapy today. Hana’s immune system is way too strong which is not a great thing when you are hoping to get a donor heart that your body won’t reject. As it is, they would only be able to accept donation offers on roughly 20-40% of the available hearts. So, in order for her body to be able to accept a larger range of matching donor hearts they decided to start IVIG therapy to lower specific antibodies. This means she is getting a special IV drip, specially concocted for her, over the next 18 hours. They have to monitor her closely because some patients have adverse reactions. This means she will be limited to her room until the treatment is done. We did, however, get to go to the day room by ourselves (without a nurse) for about 20 minutes before her treatment started. She certainly loved playing in a different space!
It has been a very busy day and I’m quite tired, so that’s all for now but I do have something very, very exciting and special for Hana to share tomorrow!