Cutest Blog on the Block

Friday, January 29, 2010

A new normal?

We have had a concern with Zach lately. When he is playing, he often seems like he is out of breath. His breathing just doesn't seem to match up to his level of activity anymore. He can just walk through the house and he is breathing more heavily than before. We visited the pediatrician to make sure he didn't have anything going on from when he was sick with walking pneumonia back in December --- his oxygen sats were right where they usually are in the mid 80's. Then I talked to his cardiologist. I described what is happening and asked if he was breaking out in a cold sweat or if he was panicky. I am not seeing either of those things. He said this may just be Zach's new "normal" until his next surgery. He said some children will self-limit and some will just push themselves. Zach has always played hard --- every moment of every day. He is a wild man. I guess he is just outgrowing his current capacity. Just a reminder that he is not normal. Anyone else seeing this trend with your cardiac kid?

Like the Energizer Bunny!

We go back to the cardiologist Feb. 5 for a checkup. I'm not sure if he will do another echo or not, but I do know he is interested in his weight.

So, MUSC finally called to schedule Zach's heart cath. It will be on Apr. 6. We will go down the night before. Last time he had a cath done (at 8 months old, before the Glenn), we stayed that night with some friends of ours in Charleston and I'm glad we did because Zach did not do well. He was crying and crying and crying, so I fed him a bottle, which he threw up later that evening. We were so afraid that he had aspirated. The friend that we were staying with actually works at MUSC. She listened to his lungs and reassured us that he was fine. I'm not sure if he was just in pain or what, but at least this time he will be able to talk to us and hopefully give us a clue about pain, hunger, etc... I still don't like the idea of taking off and driving home 4 hours with a freshly operated on cranky child. So, we might just have to find a way to stay over the night after the cath, too. Just to settle this mama's nerves. Sigh...

From the heart cath, they will be able to formulate a plan of action for the Fontan. We know it will be sometime this summer. It just depends on his weight. Last week at the pediatrician he was 31.2 lbs, so I figure he will hit the 33lb mark in 2-3 months. He has not been eating as well lately, so I am just waiting for his next growth spurt to kick in.

We appreciate your prayers for our little wild man and his heart!

Heart hugs,


  1. Logan would always sound huffy and puffy while he was playing hard but that was just him. Of course he had the high pressures in his heart and the conduit stenosis so that didn't help any. They are right. Some kids are just like that but you are the mom so if it seems like he is in trouble or you don't think something is right then make them see him.

    Stef, Ryan, Wyatt and Logan

  2. I'm thankful for your post today, Pam. I can't even tell you how many times the past month I have had these exact thoughts swirling around my brain. Luke has always seemed almost asymptomatic, surprising us with his energy and endurance. But this past 4-6 weeks, I definitely have noticed his breathing becoming louder and heavier. I wouldn't say more labored, just more audible. It has been disconcerting for me, because it's such a reminder like you said, these kids' hearts are different and their normal is different. I have checked in with our p.c. as well, b/c at first I thought it was related to weaning him from his diuretics. But after talking with him, I do think it's just that he's getting bigger and his heart is having to compensate and work even harder. He still has bundles of energy, like Zach, but as he gets older, I do see him taking more walk breaks than other kids and breathing heavier than other kids his age. I don't like it one bit!

    I'm glad you asked around as these things can turn into consuming worries without some reassurance that their little hearts are okay.

    Thanks again for sharing and know that we are having the same thoughts across the U.S.!


  3. I never made the connection between talking to you via email, and your blog! I'm so glad I stumbled upon it again! I found it a little while back and apparently didn't mark it so I would notice that you updated. Yay for finding you again!! :)

    Lots of prayers for Zach (and the rest of you) as time for the Fontan draws near. I'm sure it's really difficult watching surgery time creep up as they're older. Other than his color, we never knew a difference when it was time for Derrick's surgery. But watching Zach run and play, then have to rest...I'm sure that's tough, and alarming!

    We'll be saying lots of prayers for that adorable little guy.

    I can't wait to meet all of you next Saturday!!!

    Big heart hugs and prayers,


I'd love to know what you think!