Tuesday, February 10, 2009

Double Guessing Yourself

It's funny the timing of things...

When my kids get sick, I have a tough time gauging how really sick they are. If there's a fever, I usually take them into their pediatrician for a look. I often feel like a hypochondriac. What can I say, I've developed a distrust of the medical community in general, which has been combined with my tendancy to worry. With reason (Sadie's many medical mishaps and oversights, Jason's recent brush with death), I know, but a worrier none the less.

There's a flip side to that. Being a rational person and recognizing the current stress levels and prior experience, I often discount my gut and ignore symptoms until situations escalate further than they should.

The past 6-8 weeks is a great example of what I'm talking about. The experience at the hospital with Jason left me feeling I couldn't trust the simple diagnosis any longer. I ended up taking Sadie in a few days after his initial visit - to the ER no less - because she had 5 or so similar symptoms to his presenting illness. Her pulse ox then was around 94. They said it was likely because she has a heart defect and had been sick. I dismissed the episode of being one of neurosis and exhaustion.

The kicker is, Sadie hasn't really been well since that time. She's been OK, still full of spunk, but not quite at full steam. She's had several episodes of labored breathing, but in conjunction with a cold, congestion or a nasty cough. She just hasn't seemed to shake it. I've noted three seperate times that her nailbeds were a bit bluish. I chalked it up to her coughing and congestion. I thought perhaps it was pneumonia, it wasn't. Bronchitis, nope. I had lots of ideas, but never once allowed myself to think about the heart as being part of the issue. Yet, inside, I've been in turmoil, worried that something bigger is being missed. I tell myself it's because I'm surrounded by CHD-related things right now, and over vigilent with her. T

Today was visit #6 in 3 weeks for Sadie to the doctor. We saw one of our favorites, and she took a lot of time, checking her pulse ox, listening to her heart and lung function, asking the right questions. She felt Sadie was, indeed, experiencing periods of cyanosis ("blue" syndrome - when the body doesn't oxygenate as well as it should. Which shouldn't be happening based on her reports from the cardiologist. (Guess who's switching cardiologists after we're over this hump?)

An uneducated guess is that perhaps Sadie's pulmonary hypertension was never really resolved as her cardiologist told us over two years ago (without checking for further symptoms no less). I always ask for her doctors to check at her pulse ox at well visits (it's a simple, fast and "free" test), and usually it's 98-100, but when she's ill, it easily drops to lower 90s. If she's really sick, it's in the upper 80s.

I know it's nothing "serious" compared to the many challenges some of my friends face. I feel silly, to be honest, when I worry about Sadie's heart. My heart friends have children who on a GOOD day are in the upper 80s for sats. So I have a hard time feeling urgency with my child, who is often called "fixed" in the CHD community.

I feel like this is a bit of a push from above. A reminder that I'm on the right track in working to create some change for CHD patients and their families. And an even more poignant reminder to trust my instincts as a parent. To calm the brain, and let the gut do the talking when it comes to their healthcare.

Side note - I really missed Lobby Day today!


  1. Oh Kim,

    How scary. Don't ever feel silly for worrying about Sadie's hearts. Seriously. Once a CHD baby, always a CHD baby right? How scary that she's experiencing cynotic periods. We do love our cardiologist, let me know if you want to chat about it.

    And THANK YOU for all you did to organize lobby day. It was really inspirational to be in a room with so many people who care passionately about this epidemic. I think we made some good headway and I'm excited to hear about the impact! And I know it's small consolation, but we're going to follow up with Webb & Warner & Cantor when they're home on recess. We'd love to have you come along!

    Please let me know if you need to talk.


  2. I think we'll never stop worrying about our little one. It' OK to be concerned because I think it keeps us in tuned with what's really going on with our little one. Someone has to keep a close eye, right? Mom's instinct is usually, if not always, right. I had the same feeling with the first cardiologist we had, something was not right. Unless I can be proven wrong, I think we could have avoided an OHS, just because the first cardiologist wanted to wait and see then one day, it became one big emergency when another cardiologist from another hospital saw the echo. You're right, follow gut instinct when it comes to health care! I'm with you 100%. If you feel something need to be done, be your own little's voice and do something now. Keep up updated.

    BTW, we're now being followed by the second cardiologist, it wasn't an easy process, but I was going to get it done no matter what!!!