#i💗Zuri
#i💗Zuri

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Everything is going well, why do I feel anxious?
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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?

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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!!!

Stefann Paddock
Long-term Hospitalization

I’ve talked about Zuri’s condition and about some of the treatment she has received, but what about the other people Zuri’s condition has displaced? What is living out of a hospital like? Honestly, it’s not that bad. Don’t get me wrong, I would much rather be home. I yearn to mow the lawn for the first time since…before I first mowed a lawn. But there are some perks to Seattle Children’s Hospital that make me miss home a little less than I would, I imagine. For example, I am writing this from a brewery that is directly across the street from my daughters first I.C.U. room. Check it out….

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It’s alright sometimes. Its inconsistent, but if you don’t mind that kind of thing, it’s an ok place to get a pint. Haven’t tried the other brewery a couple blocks down yet. Maybe they are better at the art of conversation….

Also, I cannot thank the Ronald McDonald house enough. The service they provide is top notch, if you can get in (we were on the top priority list and waited a month and a half). I’m sure the experience varies between houses. But our experience has been very positive. One thing I must mention is, with few exceptions, the staff is quite kind and welcoming which makes a big difference when your spirits are down.

There is always an event for every holiday. There was an Independence Day water fight in the park, and a video game event put on by a non-profit organization, where kids of any age can come play super smash brothers and eat sandwiches from Panera bread. They were doing it just because. It was so awesome. The kid in me really enjoyed pwning noobs using Pokémon trainer.

Last but not least, the services and events within the hospital itself. For example, volunteers will play with your kids for two hours every day. It’s great for when you need to finish some laundry, catch up on work emails, or go grocery shopping. Another is the family resource center, which has hygiene products, massages for parents and color printing services. I don’t use them much, but they are there if you need them. Other volunteers sometimes cart around free Starbucks randomly during the week. An announcement will let you know where they are in the hospital. Finally, games and toys for your children. Not just for your sick child but each and every one of your kids will receive idiotic amounts of toys. We have started telling people to please, stop, giving!

There is is much more I could go on about, but I think I will save that for a post called “ Hospital Life-Hacks” as in, “cool things I’ve learned while staying here that has made my life easier.”

Cheers!

Stefann Paddock
The delicate Dance

Zuri does this thing that has all the doctors baffled. They will give her a medication expecting a certain result, and she will almost always surprise them with a reaction that is completely unexpected. This makes treatment difficult and sometimes, dangerous.

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The cycle goes like this…

Zuri is retaining fluid due to poor heart performance her blood pressure is extremely low so the fluid goes the path of least resistance and she soon begins to swell up. It starts in her face and liver then spreads to her stomach, hands, and feet.

To counter this, the doctors give her medicine for strengthening the hearts pumping action, then thinning the blood to make it easier to pump through the body. They go very heavy on the diuretics in order to purge the body of the extra fluid.

As a result, her organs like the liver and kidney become damaged because they need fluid running through them in order to operate properly. Also, her blood is concentrated and the lack of perfusion to places like the stomach makes keeping food down impossible. She can’t sleep because having no fluid also causes electrolyte imbalances. The nurses call this “tachycardiac,” meaning her heart starts to beat irregularly and fast.

Thanks to the heart beat at a constant 170 beats per minute, she can’t sleep. It’s like trying to sleep while sprinting. It will be days before her heart goes back down to an acceptable 140 bpm.

Obviously, damaging the organs is not optimal if you are trying to preserve a worthy vessel for a rare commodity such as another human’s heart. So the doctors react, or perhaps, overreact. They tell us to give her all the fluids she wants. They adjust the nutrition cocktail being implemented by IV to compensate for the losses and surplus of electrolytes. They stick a tube through her nose that leads to her stomach in order to force feed her this garbage called ”Peptamin”. Every time they do that she vomits for the next few days. Bare in mind that vomiting stresses the heart, exacerbating her condition.

Slowly, they remove and replace meds and solutions. First step, increase her fluid intake to save her organs, stop force feeding her peptamin so she can sleep. Increase the assistance being given by the bi-pap machine (breathing machine). Increase her heart strengthening meds. Stimulate appetite and sleep with meds. Pull back on the diuretics.

Things seem to go well for a few days after all this, BUT THEN SHE STARTS RETAINING FLUID AGAIN…and the delicate dance begins again.

This cycle occurred about three times before we started speaking up, feeling confident that we are knowledgeable enough to contribute meaningful input, we requested a slow methodical approach as opposed to the intense and very fast reaction that had happened a few times prior.

The pendulum swings from left to right but eventually it should settle in the middle if we play it smart. All we are trying to do right now is keep her from being anesthetized up until her surgery. We want her awake, we want to keep her mind healthy as well as her body. It is a lot more work having a conscious kid in the hospital, but it is what is best for her and in my opinion, as a parent that should be all you want for your children.

Stefann Paddock
(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.