Noelle is in recovery after her cath lab procedure. They had to put a stent in her aorta rather than just a balloon dilation. Everything went well and her aortic arch is looking much better. We did have to sign on to a research study on an emergency basis after the doctor went in and decided she needed a stent but the typical bare metal stents that they use was not a safe option for her. They used a stent that is covered by a stretchy material (like gortex) and is experimental at this point but Seattle Children's is one of a handful of hospitals that do this routinely.
The big news is that the rest of her heart is not doing as well as we thought. She will need a valve replacement within 1-2 months (as soon as they can discuss her case and find the first available spot in the schedule).
As you know, we were hoping that this would not need to happen for at least a couple more years but apparently she is more of a ticking time bomb than we knew. Pretty scary actually; that was hard news to hear.
We are in good hands here. Seattle children's has been amazing so far and we feel well taken care of and informed.
Please be in prayer for all of us but especially Noelle. I fear for the emotional hit she is going to take when we tell her that we will be coming back here soon for the big surgery.
5 comments:
Oh, so joyful that things went well and she is recovering...but aching about the news of her heart's status. I'm so sorry. We will continue praying. What a strong little girl to endure this. We love you guys.
hugs and prayers for all of you!
We will definitely be praying for you all, Noelle and mom and dad. How are you all holding up? Give her hug from us.
MeDenne
I just wanted to send my love this morning. You are on my heart and mind constantly. When you know more, could you email me and tell me when you are coming home?
Call me whenever you need to talk.
Love you!
Just wanted you to know we are sure thinking of you and praying! Big hug from us. Tonia
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