Today is January 30th, 2015. I wanted to share an experience I had yesterday, with you.
I have a son named Tyler. He just turned 13 and he was born with Congenital Diaphragmatic Hernia (CDH). It's a condition that we must always stay on top of. We are part of the "lucky" 50% that our child survived.
We went in this week for his annual check up with our doctor. Having a child with CDH, you learn really fast that nothing is "normal". At his check up, our doctor checked his spine for scoliosis (very common for kids with CDH), we reviewed his reflux meds, ordered some tests and discussed having a miracle sit before us.
Tyler got a chest x-Ray to make sure his large Goretex patch that was made as an artificial diaphragm when he was 5 days old, is still doing its job at being a barrier to the organs between his chest cavity and his abdomen. This is extremely important. If his diaphragm tears, Tyler can go in to respiratory failure and die. It's a reality that scares me every single day of my life. I have no reason to think there is a problem with his diaphragm right now, but we always do chest x-Rays to make sure!
Another thing we will always have to keep an eye on is pulmonary hypertension. Pulmonary hypertension is an often fatal complication of CDH. Our doctor scheduled an echocardiogram to check for signs of pulmonary hypertension.
We went to our local hospital to do the echo yesterday. We got checked in, went back, everything was going fine. Tyler took his shirt off and laid on the table. It's been quite a few years since he's had an echo, so I was explaining everything that was happening. He was pretty anxious just because he didn't know what to expect.
The tech was going along as expected but then he called in the radiologist. No biggie, I thought. They started speaking in medical terms I didn't understand. I know a lot of medical lingo, it comes with the territory, but they were talking about imagery. It felt very secretive to me. I hated it. I didn't know if they were seeing something concerning or it was a "show and tell" type of situation. I know Tyler's insides don't look like most people's, so I was hoping they were just curious.
They kept going..... and going..... and going......
I was getting pretty nervous. The what if's started running through my
head. What if they were seeing something suspicious? What if my 13 year
old son was showing signs of pulmonary hypertension? This kills people
daily, you know? Like in a vortex, my mind went spinning in circles.
Panic was creeping up on me. I could feel my face was flushed, my heart
racing, I was getting restless. Tyler has come so far, this setback
would be devastating.Well, that 20 minute echo turned into a 55 minute torture session for this mom. They finally ended and I asked if they could tell me anything about what they saw. The reply I got was, "I wouldn't be too concerned". Really? Then why not just tell me you're just excited to see something different? I was so frustrated but relieved. I feel like we have dodged a bullet, for now.
Tyler will never be "out of the woods". We will always have these situations to deal with. Forever. I'm so grateful to be dealing with scary echoes instead of death anniversaries.
This is the reality of the long term effects that CDH has on a family. Thanks for your time.
Sincerely,
Hope Clyde
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