Monday, June 4, 2012

Because I can be a deep thinker!

My brain is on overload tonight as I sit here and look at a picture of a sweet boy. A picture that looks eerily similar to many pictures of my own sweet boy.

That got me to thinking. First, let me give you a little history about myself so you understand why I think like this!

I have wanted to be a doctor since I could remember. When other girls were having pretend tea parties with their dolls, I was wrapping mine in ace bandages and giving them shots with my grandmothers old broaches. My mom's stroller was my ambulance, and it would often go barreling down the street to rescue people.
When I was 10 years old my dad bought me some med school textbooks he bought at a yard sale, knowing I would love them. I read those suckers from cover to cover...many times over! When I got into high school I thought it would be impossible for me to go to med school, my parents didn't have a lot of money, and I decided to be a paramedic instead. I signed up for the EMT class my senior year, but had to cancel it because I made the drill team. I decided I wanted to be a nurse after I had my first baby. I got my CNA, and got my dream job at the childrens hospital, but after Jaxson, I never did finish nursing school. My pediatrician told me many times I should go back to medical school. She could see my passion and my smarts for it. I told her she was nuts!
When I worked at the hospital congenital heart defects in children became my passion. I worked on the surgical unit, where all the heart kids came from PICU. Of course we had many other surgeries, but heart defects always fascinated me, and I studied up on it a lot at work.

Yesterday, after I read about another sweet DS baby getting extremely sick after going through his heart repair, it looked too familiar. I can count 7 children that I know of, only one is still living, that this happened to. The first one was Jax first girlfriend in the PICU. She spent 4 months with us there. She, like Jax, struggled with pulmonary hypertension and respiratory distress until her heart surgery. AV canal does that, I remember Jax always struggling while he was unrepaired. Here's the difference with her. About a month post op, she ended up back on life support. Her pulmonary hypertension sky high. No one knew why, no one knew how to help her. She eventually lost her battle with PH, and was our first experience with losing a friend. I didn't think much about it then, as we were new to Down syndrome and all these issues. But now many other children have suffered the same fate. Had their hearts repaired, only to have their PH get worse, the child needing life support and sometimes ecmo, the docs not knowing why, and then losing their battle.

Because this is my passion, and I can be a deep thinker when it comes to this, I am wondering if totally repairing an AV canal in some kids is actually a bad thing. Of course all kids are different, and there is no way to know which kids it affects, but it seems to be kids that had PH at birth, not ones that developed it later. Jax had a residual VSD when his repair was done, and I'm wondering if this actually helped him.

I'm going out on a limb here, but I wonder if his high right heart pressures being able to relieve themselves a bit by going through the VSD, helped. I'm still thinking this through, but I'm wondering if there needs to be some studies done, because I'm tired of seeing children have their hearts repaired, seem to be doing great, and then tank and usually die, for seemingly unknown respiratory failure.

I know, now you think I'm nuts!
Maybe its because I can't stand the unknown in the medical world. I have to find a cause for everything.
Or maybe, just maybe, its because I'm tired of seeing these poor mothers have to go through this with their sweet babies!!


Becca said...

Wow, while I have absolutely NO medical knowledge, it sounds like you may be on to something that needs investigating!! Samantha had an AV canal repair, but did not have PH. That's very interesting... And following along with what's going on with Ryan is absolutely heartbreaking. You're right, it does happen all too often. :-(

The VW's said...

Well, your thinking is right on! We were actually told this about Gavin's heart. He has a couple residual holes in his heart that couldn't be repaired, and a couple of doctors told us that it was ok and might even help with his pressures. Gavin also has a significant mitral valve leak.....which is not good.....but the holes aren't a big deal, considering his other issue. They said that it's hard to know how a particular child is going to do after surgery and they try to fix it all at once because most do fine with a total repair, and leaving a significant hole means having to go back in and open up the chest again at a later they have to weigh the consequences. Gavin's pressures were through the roof before surgery and high afterwards, but today they are at a good level. Part of the reason may be because of his mitral valve leak. (Bad for his lungs, but maybe good for his pressures?)

The body is an amazing creation, but very complicated! I'm glad I'm NOT a doctor/surgeon! I like learning about the body, but I certainly wouldn't want to responsibility of having to repair it! Keep thinking lady! : )

Ann of the Incredible Gift said...

Back in about 1977, one of my daughter's schoolmates had his heart fixed. At the time, the doctors said he would die without surgery, and had a 50-50 chance if they attempted the repair. The surgery went well, but he died anyway.

Years later I was having a conversation with a pediatric cardiologist, and talk turned to surgery for CHDs, and another cardiologist saying my daughter, who wanted her CHD fixed, was "not a candidate for surgery." He said that (those) heart defects cause changes in the lungs, which become permanent, and when they (the surgeons) realized what was happening, horrified, they stopped repairing the hearts of older individuals.

There is so much that isn't known. Please think more, and let us know what you conclude.