Sleep is proving to be difficult. Hana had fits of wakefulness in the night. Finally I asked for Tylenol and she slept for 3.5 hours straight. There still has been no nap longer than 20 minutes during the day. It is very difficult to get her to sleep before 10pm because of all the care ordered at the end of the day. We can’t let her sleep late either because of all the stuff she needs to do in the morning.
Hopefully we are only here one more week. We still need to get through her first heart biopsy on Thursday and another round of IVIG therapy over the weekend.
The days get to be long when Hana is indifferent to so many things. We took her to preschool and the playroom for a short time each. I also wheeled her around in the wagon around the third floor over and over again.
She’s still pretty cranky. It could be healing from heart surgery or cranky from being tired or moody from steroids! Her nurse again took us over to the fountain in from of the adult hospital. Hana did a lot more walking and almost running and she almost looked like she was smiling! We still hav to be careful of her falling, especially if she tried to catch her fall – she could really hurt her chest incision (hopefully the staples are coming out on Thursday).
Hana got her pacing wires out and her dressing changed. They started to wean her diuretics. Maybe soon she can be off the monitor or portable monitor and we can take her out of the room, off the third floor and maybe even down to the atrium. That would be amazing. But then again, we have had the privilege of so many amazing things come our way!
200 days in the hospital, 9 days with her new heart.