Thursday, February 21, 2008

CHWO pediatric non invasive cardiac center....

is my nemesis... LOL
I mean I am very glad to have them here in London and that we don't have to travel, but as Dr Buffo put it today, "we're not developing a very good relationship are we?" This he said to me after he said he wasn't happy with Yale's condition. His ASD is once again becoming more restrictive, its not near as bad as it was the last time we were at clinic, but its not optimal. He said it is unusual for us to be seen twice in a row in London, but that he will let it be because he figures by Yale's next echo it will be pretty bad and we will be again sent to Sick Kids for him to have a cath procedure. This is not good news. Although I was prepared to hear it. Didn't I say Yale would likely be in for another procedure in 4 weeks. Well that puts on on schedule...GAH.... how frustrating.
I was really upset and frustrated and asked why they didn't stent in open in the first place. I mean he has EFE (endocardial fibroelastosis) on the left side of his heart (this makes the muscle thick and fibrous) and it would most likely return to its original shape. Dr Buffo explained that after ballooning his ASD they measure his pressures and they look good at the time. They can't keep the cath in for hours to make sure it will stay at those levels. During Yale's previous procedure, his levels were fine for them not to place a stent in. Also they try to avoid placing a stent into the ASD because it just adds another step/complication to his stage 2 surgery.

So needless to say we know we have another admission into Sick Kids in the near future. Its starting to become the story of our lives. I bet they will stent his ASD open and hopefully it will be the last until his stage 2 surgery. Its all very frustrating to say the least, but as always I am very glad we have the access we have to some very good pediatric cardiologists and Yale is taken care of long before he gets into a really bad position. Every day I realize we are so lucky he is even here with us. Going in for another procedure is very frustrating, but nothing at all when you think of what the alternatives could be.

Stay tuned for more information. We go to clinic again on Friday the 29th at 1pm and I'll likely post then whats in store for us.

1 comment:

Anonymous said...

Im sorry to hear the news, Tanna.
But I also know you and Yale are such fighters!!
You guys are still in our prayers and thoughts daily!