We are starting to prepare for discharge on Saturday. It makes me a little nervous partly because I know how much work doing all of Hana’s care at home can be (and we won’t even be at home!) and also because I just want tomorrow’s cath lab/biopsy results to be such so that she actually can be discharged. We need healthy pressures in her heart and no signs of rejection!
Things are in motion. A feeding pump and medical supplies are being delivered on Friday. Thursday I have to go to Kaiser to pick up medications. The Ronald McDonald House has been asked to find room for us starting on Friday. We still need the car seat to be delivered and then get it installed! I need to buy gloves and hand sanitizer and diapers and wipes. We need to bring things from home – a stroller, pack ‘n play and a diaper bag (I have no idea where it is!)
At least this is not our first big discharge. The first time, after we discovered Hana’s heart condition, was a shock. It was learning about medications and medical supplies and tube feedings and cleaning up lots of vomit and being worried that her heart was not well enough for her to be out of the hospital and trying to cope with it all on very little sleep after weeks on intense stress. This should be easy compared to that! I hope it is! Now Hana has a new, beautiful, healthy heart. It is miraculous.
Hana has been very cranky. It’s probably her steroids making her this way. She went to preschool and got to see Jeff the guitarist and her nurse took us to the adult hospital for the music concert. It was classical music and it was the first time I could dance and twirl around with Hana in my arms without getting wrapped up in a driveline. I could just carry Hana around with both arms and we could move freely about. It was incredible. We could go up and down stairs and we could stay outside as long as we wanted. We took her to the cafeteria while we got coffee. But despite all of these freedoms, Hana is often cranky. She will still only nap if I hold her which today was for two hours but if I tried to put her down she woke up. She needed the sleep because she slept terribly the night before.
Tomorrow is the next big day! The catheterization is where they send a catheter up her vein in her groin area to the right side of the heart to measure the pressures. Then they go into the heart and take a handful of biopsies to check for rejection. It will happen in the afternoon (Thursday) and take a couple of hours. We get biopsy results on Friday afternoon.