Phew. I've run a marathon before and I'm not sure if I was more tired after that or today's appointment!
Overall, Luke's heart is doing really well. I was surprised to see his sat's unchanged at 85-87%. His blood pressure was good, heart function excellent (we love that word!), Glenn and DKS sites beautiful, chest x-ray clean and clear, and valves still just trivially leaky.
However, we are going to the cath lab in June. Luke, even in my tummy, has always had a larger pulmonary artery than aorta. This is why his lungs were flooded with too much blood flow in his first few weeks of life and why he went in to such critical heart failure before his PA banding at 5 weeks old. This is also why they connected the PA and the aorta through the DKS. Since Luke didn't have adequate blood flow out of the aorta early in life, his descending aorta has always been a little narrowed, or "turbulent". This is extremely mild, but in our December appointment, Dr. Stefanelli did mention it and thought this would be something we could deal with in his pre-Fontan cath in the future. Today, however, he could see that the narrowing had worsened in the past five months, enough to where he'd like to balloon it sooner than later.
This narrowing, or coarctation, is still considered very mild, and in another child with a four-chambered heart, he would wait another year of two and take another look. But Luke doesn't have the luxury of that second ventricle, and we want to protect and preserve it's function and health as much as we can. Pumping against an obstruction, however small, still puts added stress on that main pump. Which we definitely don't want!
I am thankful Dr. S. is proactive, and thorough, and thankful that this is very treatable in the cath lab. I am thankful this is not an emergency situation and that in every other way, Luke's heart is so strong.
I'll post details tomorrow, but Luke handled the 3+ hour appointment like a champ. He was losing it by the end, but he hung in there. And now, as his special reward, Luke gets to "fall asleep with Mama". And he won't let you forget that Daddy's taking him to buy a new train on Saturday.
Thank you, everyone, for your support. We are blessed by it.
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Jesse,
ReplyDeleteThat is great news! Way to go Luke! We will be praying for his cath. When's the last time he had a procedure/surgery?
Heart hugs,
Pam
How great to hear the word "excellent"!! I hate that he has to have the ballooning, but how wonderful that otherwise his heart is doing so well. Keep us posted and we'll be praying!
ReplyDeleteI've been wondering how it went. Glad to hear it is good, and that your Momma instinct is right on track. It'll be good to get the cath done now, so he has one less thing to deal with at surgery time. Yay for Luke!
ReplyDeleteHooray!! So happy for Luke! :) Hopefully I can get up to Puyallup sometime in the next few months to visit your family. We miss all of you very much. Hugs to Luke! Good Job, Buddy!
ReplyDeleteYou were right in your tummy, Mama! I'm glad the appointment went well and that you guys have a cath plan. I know it is not fun to put those dates on the calendar, but it is so good that Luke is so well cared for and that you all have a solid plan. What a little trooper you are, Luke! I hope you enjoyed falling asleep with Mama. :)
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