Today Hana had a checkup with the pediatric cardiologist at Kaiser. She seemed to think that everything looked good, but she still wants to see us again in two weeks. She said that the blood work wasn’t quite going in the direction that we had hoped and the echocardiagrams were not showing improvement, so therefore, she just wants to keep checking her more regularly, another month is too long to go in between appointments. (We go back to Stanford in a month).
The blood work that isn’t quite going in the direction that we hope is specifically about her BNP (B type natriuretic peptide). On March 9th her level was 411. On March 24th it was 696 and on April 1st it was 899. It is supposed to be less than 100 pg/mL. This is a substance secreted by the ventricles when the heart becomes too elastic. It is elevated because of Hana’s left ventricular dysfunction.
Hana will get another echocardiagram in two weeks, right before we see the pediatric cardiologist again. Her echo’s have been showing no change and perhaps we would have liked to see some improvement. Although I guess they also look for the formation of blood clots too.
Lastly, Hana did not gain any weight since her weight check last Wednesday so I will have to re-evaluate her nutrition with the nutritionist on Wednesday when we have our next appointment. Obviously, something that we’ve changed is working because she is only vomiting every other day, but she still needs to be gaining weight, although not at the rapid pace she had been gaining.
Today we had the least amount of help yet. A friend took Poppy for a walk this morning. Another friend babysat Hana while I went to an appointment for myself and washed a huge pile of bottles, but other than that we were on our own. It was mostly okay, although when Hana vomited it did set me back about an hour. We also did not have anyone bring us dinner and I was wondering what we were going to have when I realized, some time around 6pm, that we didn’t have anything ready! It all turned out okay. Hana got to bed 45 minutes late. We didn’t eat dinner until 9:30 and we finally got done with all the day’s chores at 10:30, but it was manageable! We even managed to squeeze in some bottle feeding attempts while Hana was in the bathtub (and it sort of worked)!
This week we have three more appointments. Other than those, I want to try to get out to jog with Poppy and Hana. Maybe I’ll even attempt to make it to mom & baby yoga. But most importantly I want to practice finding something wonderful about every moment and to visualize Hana getting better, healthier and stronger.