A Lot Going On

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.

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6 thoughts on “A Lot Going On

  1. Neighbors Kathleen and Paul, I live out my life mere feet from you on the other side of the walls that separate us. Please understand that my heart is heavy with love and hope for Hana and you both. You are both very courageous by necessity, and you have stepped up and then some. Please, just PLEASE, carve out little moments for yourself. With love, John

    Liked by 1 person

  2. I pray that God will show you the path he wants you to take. I pray that you can “be still and know that I am God”… Not I of course! But just that you know that you need to be still and quiet for a moment… Relax, in order to have an opportunity to hear Him. It’s not up to you to be perfect. No one can control what is going to happen. Faith and hope. I love you all. Just know you have a lot of people praying on Hana ‘s behalf.

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  3. Just letting you know that we check into see how Hana is doing… And how you are holding up in all this. We have never met… But we know the same people and since we read everyday about the struggles and triumphs, it feels like we know you and Hana.. This is just a note to say how much we admire the way you are meeting this tough challenge.Hana is blessed to have such caring parents. Sending positive energies your way. Reminding you there are people in many places who care and are still here praying. Blessings….Sharon, Randy & Ryder in Oregon

    Liked by 1 person

  4. I was wondering about her sleeping position just before I read where you are thinking of putting her on an incline. It makes a lot of sense to me and that is what I was thinking about. Does she tend to vomit shortly after or while sleeping? You will find the right combination because you are so aware of everything. It doesn’t have to be perfect. It just has to work most of the time. I love the pictures. She gets cuter all the time and seems like she is taking it all in stride. It sounds like you have wonderful doctors. It’s good to get a few opinions, but I would want to continue seeing whoever has seen the most of this type of case. Can you find a support group through your doctors? (Maybe you have.) I think it would be helpful to be able to communicate with parents of children who have the same condition as Hana. I continue to pray for Hana and her family so add another person to her prayer group. It’s hard to “Give it to God” but He will give you the best answer. He may take some time getting back to you, but He will. My minister recently gave a message on prayer. He said sometimes the answer is “Wait”.
    The care you give her makes a difference, and yes, some of it is out of your hands, for now. She is not back in the hospital!! You are keeping her on track. Keep doing that and we will keep praying.

    Liked by 1 person

  5. Finding balance in terms of feeding / vomit is one tricky dance. But, IF it can be achieved, I believe you will find it. Just don’t wear yourself out at the expense of missing the little joys. After all, when they are grown it is those little joys that we fondly think of when the teenager before you rolls her eyes! 😝 Keep trying different combinations, you’ll unlock it eventually! Love you ❤️✌🏻️🙏🏻

    Like

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