(RepoSt) Happy Independence day

With Independence Day looming, it makes me think about what other holidays and special events we will spend in the hospital. 

It also makes me think about how fortunate we are to live in a place like this. My daughter is able to receive the best care in the country (possibly the world) and I still have both my arms, both my legs, and my soul. By no means do I make a lot of money. I am the sole bread winner, and we are lower middle class. How is this possible? I was told that most people cant afford private healthcare ($350 per month). I was told the insurance companies deny people with pre-existing conditions (not true in our case). Speaking of which, perhaps I should tell you about my daughter’s condition. She suffers from congenital cardiomyopathy. Her heart is too big for her body. It can’t pump efficiently so to compensate the right side of her heart has expanded. It has ballooned beyond what is sustainable and as a result suffered her second hearth failure at just 3 years old.

After that , we figured two near death experiences in two years was enough and got on the list for heart transplant. Little did we know that the road to getting a new heart was full of near death experiences…more on that in later posts.

Before getting on a list there is an entire process. They have to determine your eligibility. Is it worth their time?  We were visited by the surgeon, the Cardio specialist, the anesthesiologist, the social worker, and the psychologist. They determined that she was eligible, and we were excited to hear that our insurance covered the procedure, the recovery and everything else leading up to it. Fully covered. Great!

Now to get categorized.  For transplant recipients, the order to which the hearts are distributed goes by how terribly the patients are doing, health-wise. There are three categories: 1A, 1B, and 2. 1A is a kid who relies on machines and medicines to continue to live. 1B is a patient who needs medicines to live but needs no assistance with breathing or a machine in place of her heart. 2 is for patients that need a new heart but can stay at home and are in no immediate danger. Zuri is a 1A. She will die without Milrinone, a med that helps the heart pump stronger, a BiPAP (breathing apperatus), Epinephrine, Lasix, Digoxin, Spironolactone, Aldactone, Chlorothiazide YADA YADA YADA!…..I could go on forever. She is so chalk full of meds it’s insane. 

After being categorized, all that is left to do, is to wait. We have been in the ICU for two months. Which is nowhere near the average wait time I’ve been told. So, we are planning on having the kids birthdays here at the hospital, in October, November, and December. Since this all started, my mantra has been “It could be worse.” 

We’ll, there you have it, Sorry if the first post was too long. I needed to give you guys the SITREP so you can orientate yourselves. Subsequent posts will be WAY more concise and hopefully fun. I will go into more intimate detail about all the different interesting things that go on in the hospital and give you updates on little Zuri. I’ll probably do a Bio on her and her personality as well, so you can get to know her. She is so strong. I am amazed at her resilience and her drive. I can’t wait to tell you about her. But, I’ll save that for another day.