It’s been a long week. Besides taking care of Hana, we have to get a new mortgage this week and sign a new TIC agreement. If you don’t know what a TIC is, its a strange real estate practice in San Francisco where a former single family home/building is split into multiple units. This is what we have, a one story flat in a two story building. Our partner decided she was putting her flat on the market a week before Hana went into the hospital. We had to get a lawyer and a new mortgage. We had to meet the new partner/owner. Fortunately, our friend Rose handled most of this. But it is still extra stuff going on that is adding stress and extra work right now. Yesterday the notary from the title company came to the house and we had to sign a huge pile of papers.
Anyway, I haven’t had time to write. Hana saw the feeding specialist again yesterday and we had a fairly successful session where Hana ate a couple of teaspoons of prunes. A few hours later, back at home, she vomited a lot. It was at the end of her feed and it looked like the entire feed. It didn’t even look slightly digested, it just looked like milk that had spilled on her tray. She vomited a second time yesterday, but now I can’t remember when. It was a very small amount, whenever it was.
Later in the day, Hana had another echocardiagram and we saw her Kaiser cardiologist. Her Kaiser doctor seems much more concerned than the folks at Stanford. That is not to say that the folks at Stanford aren’t serious, they are, but I suppose they also see this every day, all day long. I suspect that Hana could possibly be one of the sicker patients our Kaiser cardiologist sees. Her concern is that Hana is not showing any improvement. Her echocardiagram is essentially the same as that first fateful day. The meds are keeping her stable. But how long do we let her keep vomiting once, twice, three times a day? How long do we make her get her nourishment from an NG tube? How long do we make her take all these medications? How long do we allow her to teeter on the edge before she gets a cold? Kids get sick eventually and Hana getting sick could mean time spent in the ICU. How long do we let this be her way of life? She also said (the cardiologist) that we are essentially trading one illness for another. Transplant is a very serious thing. It means a lifetime of medications and lots of appointments, just to name a few things.
It was good to hear her perspective, even if she kept saying that she defaults to the folks at Stanford because they are the experts in heart failure/transplant. She wants a cardiologist to look at Hana every two weeks, whether its at Stanford or with her.
Today there were three vomits (so far). Two very, very small ones and one very large one. Sometimes I think that if I can just get the right balance of volume, calories, feeding rates, positions, sleep positions, timing of meds then she won’t vomit, she will gain weight and thrive. Or, maybe she is vomiting a lot because of her heart and that is the part that I am in denial about.
I talked to the dietician today. We are going to hold steady for now – try to not run her bolus feeds during the day while she is napping. If that doesn’t seem to help over the next several days then we may try having her nap and sleep on an incline. We will do another weight check in ten days or so and see if she is gaining. They would like her to gain a little bit more than she has been. Oh, did I mention that she gained weight at her weight check yesterday? She gained 100 grams over the last week, which I think is about 3.5 ounces.
Today felt really busy, from the moment I woke up until now. What happened today? We tried some more prunes, with a little help from our friends. She took a teaspoon or two, I think. We changed her NG tube because we got new tubes delivered today. The new tube has me very excited because it means no more leaky tubes. We are trying some new adhesives as well, since the duoderm seemed a little harsh on her skin, although when I took it off today it didn’t look too bad and it had been on more than a week, I think. Hana was very tired from napping poorly and the NG tube insertion didn’t help. I sent her to bed without a bath.
There is a dark corner of my mind that believes that if I do an amazing job, perfecting everything possible, taking care to pay attention to every single detail, to never cut a corner, then Hana will get better. Like it will make the difference between getting better and getting a transplant. Maybe some of it makes a difference. Maybe some of it is just out of my hands. But I can still try and I can still hope and I can still pray. And then somewhere in between I need to find some peace.