After a two week wait, we don't know much more than when we started.
If anyone knows more about cardiac caths than I do, please chime in--- Dr. Love said the normal pressure is around 2 and Mattea's were in the low 20's. With the nitric oxide, they came down to 13. He said that was not good but hedged around the surgery issue. All he could tell me was that he would submit all the results to Stanford in CA and to Denver Children's hospital and see what the surgeons had to say. Why he hasn't already done this, I don't know. I was under the assumption he would be able to tell me one way or the other already by today, so I am a little frustrated. Then he brought up heart/lung transplants but he said "people with syndromes" don't rank very high on the transplant waitng lists...just what a mother loves to hear.
I need some chocolate.
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Grrrr! Feelin' your frustration here. He could have told you this much weeks ago! Keep us updated, OK? I'm feeling really blessed right now that our cardiologist has such a positive, loving attitude toward Ralphie. I don't understand...how can Dr. Love NOT be in love with Mattea?
ReplyDeleteHow about asking on the Down-Heart group? They ought to be able to tell you about cardiac caths, pulmonary pressures, and surgery.
ReplyDeleteSorry you don't know any answers yet...we will keep praying for Mattea, and for you!
ReplyDeleteLove,
the Adamsons
I still feel the cup is half full; while I can't understand why the 2 week wait at least you're moving ahead with opinions and answers, ideas and options will come from these. Maybe not the ones we all hope and pray for, but ones from which positive decisions for the best plan forward will spring. I only have to look back in terms of weeks to see improvements for Mattea...I believe there will be more!
ReplyDeleteLove you!
I will keep praying for Mattea and for you. May God direct you to the people who can give you some answers and some hope. God loves that little girl of yours!:)
ReplyDeleteAmy
Stephanie
ReplyDeleteIf you ever met this Dr Love who is so impressed with himself that I want to take him out behind the woodshed for a discussion. You would understand a lot of what we are going through. I was ticked when Lou called and said the little bit of crap he did tell us. I have to stay away from him for now as I really don't like him and will most likely tell him just what a jerk he is and that he can take a hike. But we have to play nice nice for now.
I fired one surgeon that wanted to treat Bre like a lab rat and I am getting ready to tell this one where to go too.
I have this feeling that Mattea can have a much better chance at life if we can the right doctor to help us help her. Having been around all these kids for a few years you can almost tell that things can be better but you just have to find the right key and the right door so we keep looking hoping and praying for things to work out for Mattea if not then we will enjoy her while we can and I will be the bear that the doctors have to get past to get to her and ask Lou it is not a good thing to get on my bad side as I am like and elephant I don't forget or forgive stupidity.