My daughter’s Berlin Heart is working well. She is stable and we no longer have to regulate her eating and drinking. She is smiling more than ever and she is less irritable. Things are going good. Why do I feel so anxious?
We are waiting for a new heart. The standard time for an acceptable heart is 5-hours transportation time. Our hospital is accepting hearts from 7 hours away. Which means she is accepting hearts from other UNOS regions. Every minute it takes to transport a heart, the value of that heart decreases exponentially. Time = risk in the case of a heart transplant.
Yeah, my daughter suffers from cardio-myopathy and she can accept hearts that are much larger and older than normal. She is accepting hearts from 1000 miles away. She is O+ (which is a common blood type)…. she should be able to find a new heart no problem, right? WRONG! Everybody wants an O+ heart. That heart is compatible with almost every other blood type. So, not only is she encroaching on other regions hearts. She also has a desirable blood type. Which means EVERYBODY wants Zuri’s heart. The universe is cruel but its not all bad. We could be living somewhere other than America. At the moment, I pay $600 a month for health insurance. Some may see that as a lot, but I would like to put it into perspective for you. Not only is my daughter getting cared for 24/7 by the best nurses and doctors in the country, she is taking proven medicines, monitored by the latest technology and on top of it all, we the parents get to tell the hospital exactly how we want to treat our child and also get $36 for meals per day. ON TOP OF THAT! There is a child life service that I have mentioned before that will watch your other kids for 2 hours a day, and entertain your sick child that is admitted for another two hours…There is “free”/available coffee, snacks, comic books, magazines, shampoo, conditioner, body wash, feminine products, lotion, games, toys, printers, and family facilitie. PT which you have to pay for through insurance will also play with your kid…IDK…It seems to be worth it.
I am happy with the level of care my daughter is receiving. I pay a lot per month, and I seem to be getting a lot back.
HAVING SAID THAT!…I do have some questions that need answering but I’ll save that for another blog post.
Have a good one fellas!!!