Today we had an appointment with our pediatric cardiologist, Dr. Parrish. Drew had an EKG and an echo and he did great. He is such a brave boy and listens so well to the Doctors, nurses and his parents. He laid still and watched sesame street for 45 minutes during the echo and only occasionally complained that it hurt. I think it was more uncomfortable with the wand pressing on his belly and ribcage than painful, but he doesn't know that word. The worst part was taking off the 15 "stickers" after the EKG was over. He also got to choose a surprise when we were done and he came home with a tiny little plastic alligator.
The results were encouraging: his heart is functioning well and he is doing great. For a split second, I was waiting for them to say "and nevermind about the surgery." But of course they didn't say that. It is actually a good thing for them to do surgery while he is healthy and his body is not in distress. The other good news is that Dr. Parrish thinks that his heart looks so good that it is "tempting" to do a complete repair instead of the Fontan that is typically the next step after the two surgeries Drew has already had (a Norwood and a Glenn). That means they would restore his heart to a normal circulation pattern. This would mean a better long term prognosis, as a Fontan circulation increases the pressures in the heart and lungs and these kids usually need some kind of additional procedures once they reach adulthood.
So that would be awesome! But I'm trying not to get my hopes up, because we don't really know which surgery they will do or when until after Drew's heart catheterization. We will be scheduling the cath at UCSF hopefully early in April.
The results were encouraging: his heart is functioning well and he is doing great. For a split second, I was waiting for them to say "and nevermind about the surgery." But of course they didn't say that. It is actually a good thing for them to do surgery while he is healthy and his body is not in distress. The other good news is that Dr. Parrish thinks that his heart looks so good that it is "tempting" to do a complete repair instead of the Fontan that is typically the next step after the two surgeries Drew has already had (a Norwood and a Glenn). That means they would restore his heart to a normal circulation pattern. This would mean a better long term prognosis, as a Fontan circulation increases the pressures in the heart and lungs and these kids usually need some kind of additional procedures once they reach adulthood.
So that would be awesome! But I'm trying not to get my hopes up, because we don't really know which surgery they will do or when until after Drew's heart catheterization. We will be scheduling the cath at UCSF hopefully early in April.
Normal Heart
Interrupted Aortic Arch
6 comments:
even though you already told me on the phone, i cried when i read this. that little boy is so precious and i love his heart so much that i have the hardest time believing that his physical heart could have anything wrong with it at all. i love you guys.
It's just such a miracle what they can do with medicine and surgery nowadays...
A miracle.
My prayers and thoughts are with you, as always!
there is a family who has a daughter recently dx with digoerge and also has a complex chd that I thought might benefit from your expereince and support? they have a well written blog at http://ramonamae.com/
Hi Andrea, glad to hear the news.
I'll be hoping with you that the doctors will be able to make the right choice about what the next step should be. And keeping my fingers crossed for a complete repair. I'm meaning to call you. Every time I think of it it's like the middle of the night or would be sooo early there because of the time change. I'd have to tuck you back in after we chatted ;) Thank you for your continued support and input on Ramona's blog.
Jane, Ramona's mom
Hi Andrea,
Just read your entire blog, and LOVED every part of it. Especially impressed with the heart and DiGeorge links and the diagrams of the heart. The photo of you and your husband at the wedding was a keeper, and, may I say you looked very supported? I bet you probably just figured out who is posting...Love, AL
Linked to your page through Riley Norton's. We met you a few years ago at a Christmas party through the Heart Fund. Our daughter, Jillian, was also at UCSF when your son was there - that's how we came to know Suzanne and Ken. Jillian also has interrupted aortic arch (among other defects) and will be at UCSF for her heart cath. on April 3rd. It is encouraging that Drew might be able to avoid the Fontan. We will keep Drew in our thoughts! Maybe our paths will cross at UCSF.
Dina
Post a Comment