Outside

Last night was a bit rough for me – sleeping didn’t go too well, but it didn’t go too bad either. I think I woke up to comfort Hana six or seven times. Part of the problem is the quiet. You hear every little noise when there is no longer an air compressor in your room. Fortunately, we’ve always used Hana’s white noise machine so that has remained a constant. In fact we are on the second white noise machine, the first one got dropped so many times in the hospital. But if I’m talking about quiet and white noise then things must be going pretty well.

We are chipping away at things in order to get discharged. Her cannula sites need to ooze a little less. She is coming down on diuretics which may need adjustment to other meds for high blood pressure (common for heart transplant). She needs to finish her IV antibiotics. They need to get her tacrolimus (Prograf) levels just right. She’s off her oxygen. She needs to get her pacing wires removed. There are a few more things to watch and do later in the week. There’s a chance that she could be discharged next Monday. I’m trying to wrap my mind around that.

Hana has been more attached to me than usual. She watches me like a hawk to see if I’m going to leave. I get it. I don’t blame her for being like this at all. I also feel that she can be guided to trust again. She’s been through a lot and much of it she’s had to face without me or Paul. I don’t let my heart break about that anymore because there’s nothing I could have done to change it and it doesn’t do any good – I just try to validate, reassure and guide her forward. Right now she needs a lot of cuddling and so that is just where she is in the process, I don’t complain because I enjoy it too!


Of course, you can’t cuddle all day, every day. It seems like that would be the best medicine, but sometimes getting up and moving around is also very important. That’s when you have to push tough love because Hana did not want to get up. It was time today for her to really start moving. They turned off her oxygen this morning and Hana needs to work her lungs. A friend (adult) that Hana loves came to visit and that was motivation for her to start playing and talking a little and she even ate a little food! 

In the evening Hana’s nurse, one that she’s had in the past, took us over to the adult side of the hospital to the big fountain. We wheeled her in her red wagon through the empty, Sunday halls to the main entrance. It was her first time outside without the Berlin Heart since mid-November. When we got to the fountain, a place Hana has never seen before, she tried to climb out of the wagon. We helped her out of the wagon and I thought she was going to jump in the pool of water! (She can’t take a bath for at least six more weeks.) Hana has barely stood, let alone walked, in a week but she started walking and almost running around the perimeter of that fountain. She started signing too – water, tree, again, bird, rain – she thought the fountain was rain. She was in awe. She was just amazed and joyous. Her transformation was so amazing, I think we were all teary eyed. 




199 days in the hospital, 8 days with a new heart.

News Links

We were overall pleased with the news segments from Wednesday. I wish they had focused a tad more on the importance of organ donation, but it has been a positive experience. Unfortunately, it doesn’t seem that the station Abc7 decided to post a link to their segment on Hana. We did get to see it but only when it was broadcast live.

Below is the link to the ktvu (channel 2) station segment on Hana:

http://www.ktvu.com/news/137287533-story
In addition to the news cast, the Stanford Medicine blog posted a story on Hana for today:

http://scopeblog.stanford.edu/2016/05/05/doctors-at-packard-childrens-extend-life-of-20-month-olds-failing-heart/
Never, in my lifetime, did I think I’d solicit a news story. But, since it’s about Hana and not about me it wasn’t too hard! I wasn’t really nervous to be on camera, we feel strongly about helping the cause, but if there were a way to tell the story without talking to me I would have liked that! Of course, a big part in this decision to solicit a news story was Hana’s personality. She is such a friendly kid and seems to handle attention well. We felt she would be fine with the cameras (and she was!). 

We were really glad to add a message out there on the importance of organ donation! Please help spread the word.

Hana’s cardiologist being interviewed

My interview

Hana, this morning

168 days in the hospital, 150 days post-Berlin Heart, 142 days on the transplant list.