Here's our little boy, almost 5 year's old in the cape I made him from a pattern on The Long Thread. The eye mask, inspired by The Incredibles, is my own creation.
Aidan becomes Super Aidan and he has a long list of super powers that change constantly but the consistent ones are invisibility (while wearing the cape), jump-stomp, and running super fast. A few times when he has been a little squirrelly, I've taken away his super powers for a few hours. It works. As the mommy, my super powers override his much to his frustration. Most times we work in conjunction.
More pictures of Super Aidan here.
This post is mainly for family and friends to give an update on his health as he had his biannual cardiologist appointment. I started this as an email to a friend and realized that many of my family and friends would be interested, too. So it is lengthy and dry for those of you here to read about sewing or baking!
Get the scoop after the jump!
Aidan's cardiologist appointment went really well. He had a stress test today as well as a check-up with Dr. Michele Frommelt. He did so great on the treadmill for his stress test and was cute and charming with his doctor, nurse and everyone within eyeshot. Mom and I were laughing most of the time. They are so wonderful there that you can't help but feel so positive. Plus, we got to show Aidan off as a success story to some people with a baby there. Children's did that for us when Aidan was a baby and now it feels so good to be the success story of our own.
His sats on the treadmill start were 86 (healthy folks are at 100, he was 92 when he returned from the hospital after the last surgery 2 years ago. When he was a baby, they were in the 70s!). After running on the treadmill, his sats were 92!
Dr. Frommelt mentioned that we might be looking at closing his fenestration in the future. They put fenestrations in all fontans now and about 50% of the kids have their fenestration closed. The fenestration is a hole in his fontan (his last surgery). In medical terms: the fenestration allows right to left shunting of blood at the atrial level to decrease central venous pressure at the expense of arterial oxygen saturation.
In layman terms, my understanding is that the fenestration is made to decrease pressure in the fontan caused by elevated vein pressure which is needed to maintain lung-blood flow since we are working around how the lungs get their blood from the heart. However, this causes more blue blood to mix in and can cause his O2 sats to go down.
If you are really into knowing more, I have some links below . The last article has a dire (to me) statistic at the end that I hope is not true - basically stating the life of the heart after the fontan is 15-30 years. This is why I tend to shy away from knowing too much.
Healthy Heart - Hypoplastic Right Heart Images
Fontan Procedure Images
Hypoplastic Right Heart Info
More Hypoplastic Right Heart Info
When Aidan was born, his right ventricle was underdeveloped - this ventricle pumps blood to the lungs to get oxygen. His pulmonary arteries were narrowed and he had a hole between his two atrium.
His pulmonary arteries and his hole were fixed at 4 days as well as his first shunt. His second shunt was required at 5 weeks unexpectedly as he outgrew his first shunt. These temporary fixes were put in to get him older and more tolerant of open heart/bypass surgery. He had his first open-heart/bypass surgery, the Glenn, at 5 months as a first stage fix and then his second open-heart, the Fontan, at a few weeks shy of turning 3. In fact, he is having his first birthday party with friends on Monday which is the two-year anniversary of this surgery!
Well, if you made it this far, congratulations. Thanks for indulging me--it is hard to explain a fenestration without explaining a fontan and it is hard to explain a fontan without explaining hypoplastic right heart...
i'm glad the appointment went well, he's super cute with that cape!
Posted by: acmcclendon | May 22, 2008 at 08:44 PM
He is ALWAYS his Auntie Missy's super hero!
Posted by: Missy Moo | May 20, 2008 at 07:21 AM
Thank you for sharing this information, although I know I'm not a family membere I read the whole thing. I'm so happy that Aidan is doing well.
His super hero outfit is just adorable. He has another super power that I'm positive you've already recognized--he's super cute!
Posted by: June | May 19, 2008 at 06:11 PM
Hope your adorable boy likes the cape. Sounds like he does indeed have super powers! Thanks for using my pattern.
Posted by: Ellen | May 16, 2008 at 07:02 PM
Oh, this was so good for MY heart. I just did a search for Fontan, as our little HLHSer goes in for his on Wednesday (and this mama is having a HARD time). Seeing your little boy being such a beautiful little boy just made my heart leap with hope. And yay for a good card visit!
Posted by: erika | May 16, 2008 at 01:22 PM
What a doll he is! I'm glad to hear that his appointment went well!
Posted by: stacysews | May 16, 2008 at 07:46 AM
Even when searching for new sewing and quilting projects, it's always worth a stop to see a cutie pie like this. Aiden is adorable in his cape and mask.
It's amazing how much of an expert a parent quickly becomes on these things like this.
I'll send good thoughts Aiden's way that all will turn out well.
Posted by: Lisa | May 15, 2008 at 10:17 PM