Fast forward 8 years & I was one of those parents. Our first visit to CMH was a blur. I vaguely remember navigating hallways with my newborn in tow while trying to maintain a stiff upper lip. CMH is a big place. A big, scary place for parents who really don't want to be there. We managed to find the cardiology clinic & I was floored by the number of kids in the waiting room. I studied the faces of the parents & actually felt a sense of relief. I was not alone. Reese was not the only kid in KC with a bad heart & this place was going to fix it.
Reese began her courtship with CMH one year ago this month & they've been an item ever since. Initially we visited her cardiologist once a month so she could monitor Reese's weight gain & signs/symptoms of heart failure. As Reese's ticker started to fail, she developed some other problems which necessitated more visits to the hospital & more evaluations by specialists. Prior to Reese's OHS, she was seen by ENT (Ear, Nose & Throat), Gastroenterology, General Surgery, and of course, Cardiovascular Surgery. She was hospitalized once in January for an upper respiratory infection...
Doesn't it look like she's in baby jail?
& then again in February for her G-tube placement (more on that in a later post)...During her OHS recovery she was seen by Hematology & Nephrology. Combine the knowledge & expertise of every one of those specialists & you've got a lot of brain power devoted specifically to my daughter's health.
I am not sharing this to elicit pity. If anything, I consider us lucky. Lucky that we live 20 minutes from the only institution in a 200-mile radius that could fix every single one of Reese's issues. Lucky that we had specialists that communicated with one another to ensure Reese got the best, most comprehensive care possible. Lucky that I never once felt Reese was treated any differently than kids with typical chromosomes. And so incredibly lucky that our army of specialists has been whittled down to Cardiology & and an annual visit to Opthamology & Audiology.
If I was Warren Buffett, Children's Mercy would be receiving a very substantial donation. But I'm not, and I'm pretty confident Ben's Powerball addiction won't be fruitful anytime soon, so until then I will just sing their praises to everyone I know.
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