Hana is doing great! She turned 18-months a few days ago. Right now she is really into playing with balls and cars. She also likes opening and closing anything and velcro. Our friends got her a slide and she loves it! I also surprised her with a tricycle, which she also loves. I think she is still making up for lost time when she was in the CVICU and laying in bed, sedated for five weeks.
Hana is sleeping better at night, especially since she is getting bolus feeds instead of continuous feeds. She is only getting her vitals spot checked a few times in the night and every four hours during the day. They do check her Berlin Heart pump for clots and deposits every four hours. She is also only getting weighed three times a week. Unfortunately, she is starting to get bored with the hospital preschool, which is not really geared toward regularly attending, long term stay kids. More unfortunately, Hana’s IVIG therapy does not seem to be working quite as they had hoped. This is the therapy that suppresses her antibodies so that she can accept a wider range of donor hearts. The therapy is suppressing the targeted antibodies but it is making others skyrocket. They will try one more round before considering other options. Maybe it means we will have to wait longer, I don’t know, you never really know.
We have received some really great activities for Hana – learning and sensory things. She is really into learning words and it is amazing to watch the joy of learning unfold right before your eyes. I think what Hana likes best right now is walking. So, we’ve been doing a lot more of that. I push the Berlin Heart Ikus around the third floor following her (chasing her sometimes) and keeping her from going past her six foot drive line. She is not that fast yet but she is still unsteady and falling is not a good idea with all the blood thinners Hana is on (sometimes she bleeds for a whole day just after getting an injection). I’m thinking of getting her one of those toddler leashes just to keep her safe so she does not pull on her drive line, which could be dangerous, but I’m not wild about the idea.
The Berlin Heart Ikus is not the easiest thing in the world to push. (The Ikus is the box on wheels that contains the air compressor and on top of it sits the laptop computer that runs everything.) First, it weighs 200 pounds. Second, the wheels do not turn very easily at all. Third, the long electrical cord (which I am very glad to have because it lets us move away from an outlet) is always getting in the way of the wheels (this is more of a problem in a small space or when Hana goes back and forth, rather than continuing on straight ahead). Someone said that pushing the Berlin Heart Ikus is like pushing the refrigerator. So, if you are going to push a refrigerator through the hospital day after day, you might as well do it in style.
Yesterday, Hana got a new Ikus. Now, she needed a new one anyway because her original one was due for routine service. But this is the surprise that Hana’s nurse practitioner, who specializes in these devices, has been working on. Hana did not get just another boring blue and gray Berlin Heart Ikus. She got a pink Ikus. A hot pink, Barbie pink, candy pink so sweet it will give you a stomachache. It’s actually very exciting and many people have come by to look at it, which has been kind of nice. I’ve heard there are only two pink Ikus’ in the world. Now we just need a name for this hot pink beauty. Any suggestions?
On another note, a few friends are doing various heart fundraisers.
Two fundraisers are children who are doing jump rope events for the American Heart Association. They are jumping in honor of Hana! You can visit Carter’s site:
Carter EarleyIf I get Michael’s site, I will share it!
Another fundraiser is local to Santa Cruz and is for the Children’s Cardiomyopathy Foundation, (Hana has dilated cardiomyopathy) in honor of their daughter, Maya, who is a few months younger than Hana and also has dilated cardiomyopathy. Hana and Maya are heart buddies and unfortunately they got to spend some time in the hospital together (although we knew them before their hospital stay). If you are in or around Santa Cruz, there will be a bake sale at Shoppers Corner, 622 Soquel Ave, Santa Cruz from 10am to 1pm on Sunday, February 28th.
The last fundraiser is for Hana’s Heart. It is being run by a college friend of mine. We are very humbled and honored by all the support and help. It warms our hearts. Here is more about it:
Day 98 in the hospital, Day 79 post-Berlin Heart, 71 days on the transplant list.