You can’t plan for it…
When it happens, it happens so fast. At first we thought she was just getting sick with the flu. She was tired all the time and didn’t want to eat or play. She wanted to be held all the time; we were happy to do so. Then we noticed her face was getting swollen. So we set an appointment at the clinic the next day.
12 a.m. My wife Diana wakes me up. Zuri’s entire body had swollen up, she couldn’t even cry. Lethargic and obviously in pain we rushed her to the E.R. where she was poked and prodded and finally taken to the ultrasound where scans showed a heart over two times the size of what should have been there. How could this have happened? She got check-ups often. Zuri has had ultrasounds before due to a doctors misdiagnosis of a genetic disorder (more on that later). There was absolutely no evidence of her having any abnormal condition of the heart.
Several hours after arriving at the local hospital, we were medivaced from Juneau to the Alaska Native Medical Center (ANMC) in Anchorage. Hours after arriving at ANMC, we were told that they did not have the resources or the doctors to help us and that we would have to be medivaced again! This time to Seattle Children’s Hospital. Keep in mind that the entire time this was going on, my daughter was dying right in front of my eyes. Her lips were blue, her entire body was so plump, her skin was cold and tight. She couldn’t speak, all she could do was squeak, pitifully and helplessly.
Finally, we arrive in Seattle. It’s very early and quiet. The fog was lit up by the street lights and the only movement came from the homeless people crossing the streets. It was like a scene out of the walking dead. It was a quick trip to the Seattle Children’s E.R. where she was almost immediately whisked to the I.C.U. Everything after that was a blur.
However, not everything was fine and dandy at this point. I was going on a couple days no sleep and had a general skepticism of doctors. I must admit I was not the easiest person to interact with at this point. But then something pretty awesome happened. A doctor sat me down and filled me in on the situation. She said, “Your daughter has suffered an acute congestive heart failure because her heart is not pumping as it should. One side has stretched so far and so thin that it can no longer pump properly. We do not know why this has happened yet, but we know how to treat it.” I didn’t believe her ( I was so tired at this point, not having slept for over two days). At that moment I was thinking that all doctors were liars, mainly because of my experiences at veteran hospitals. I asked her “How many children have you treated for this condition before?” And the doctor sits back and thinks for a second and says, “mm, maybe over a hundred.”
All doubt fled my mind at that point. After that, I watched everything they did, I asked all the questions that came to my mind. I did end up embarrassing myself from time to time with dumb questions but I am so much more confident in my ability to identify and assist in treating my daughter for it. I would recommend asking a lot of questions.
Long story short, after a stay at Seattle Children’s that lasted over a month, we were sent home with a plan and six different medications. That lasted about a year, where soon after her heart_failure anniversary, she suffered her second heart failure. And here we are now, on the list for a new heart (UNOS - 1A).♡
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