It’s hard to be here – the hospital or Ronald McDonald House (RMH) for so long. The hardest thing is getting to know so many families with so many challenging, sad or scary stories. It wreaks havoc on my heart. Then, when I take Hana’s blood pressure, it is high and I start to worry and my fear and mind go crazy about what might happen because I heard it, seen it, lived it. Then I remind myself of the truth. She is sitting on the bed and is cute and happy and I love her. That’s all I know right now, so go with that and enjoy it.
I meet kids, like Zach, who is a sweet twelve-year old and is on oxygen and is waiting for lungs. A year ago he was healthy until a rare infection left his lungs trashed, only 18% left. Before that he’d already had a rough life by normal standards, but is now in the loving care of his grandparents. The survival rate for a lung transplant is 50%. After five years it drops to 35%. We don’t talk about it explicitly, but I can see the sadness and worry on the face of Jay, his thick-Boston accent-Patriots-loving grandfather who stays here with him. (They live in Tucson.) It’s overwhelming, these stories. But I’m honored to know both Zach and Jay. They have touched my life and Hana loves to say hi to Jay and give him high-fives.
It’s been an emotional week, for some reasons I’ve mentioned in previous posts. We went to our house on both Saturday and Sunday. Leaving to come back to the RMH was really hard. I just want to be home. I forgot how much better being at home is than being in the hospital or RMH. I think I made myself forget so it wouldn’t feel as hard to be away. But being home and seeing Poppy and friends was so great I wanted to walk around saying, “Happy! Happy! Happy!” To think we might be able to live at home in a few weeks is overwhelming. Maybe the last eight months has taken a bigger toll on me than I’ve thought, maybe I’ve just been in survival mode.
Friends in our neighborhood have been helping us (maybe it’s more like we are helping them) get our house ready to be lived in again and now with an immune suppressed toddler. They have been amazing. Progress is being made on the expired foods, dust and dirt, piles of stuff being dropped everywhere. Hana has accumulated so much stuff that made hospital life more bearable but now it fills half her bedroom! There are a lot of small things that need maintenance too. I feel confident that it will all work out just fine.
Hana has been great! Her hospitalization and discharge last week confused some communication and they forgot to tell me her biopsy results. Another zero rejection, which is great! Today her Prograf level was low after bloodwork this morning so it seems to be all over the map. I think they are considering the possibility that her new antibiotic is affecting her levels. Besides medical stuff, Hana is loving going to the beach, being outside, seeing Poppy, toddling around the house and outside and seeing friends. She sure does love social activity. That is going to be much harder as we head into the flu season. I think we are just going to adapt to playing in the rain.
This week we have more free time. Today Hana had bloodwork and then I took her to preschool. While she napped, I sat out in the hallway with a baby monitor and I started to catch up on the mountain of paperwork, bills, bookkeeping, phone calls and emails that are in my backlog. It’s a bit daunting and I’m afraid I will miss something crucial. Then I did chores and Hana played, kind of like how it will be back at home! Hopefully we will get to swim this week and go back to Magical Bridge playground. Tomorrow we visit home again! On Friday we should find out when we can move back home (as long as the painters are done and the scaffolding is down).