We are taking Matthew in on Monday to his pediatric cardiologist for an ECHO of his heart.I am very nervous about this ECHO. On December 1st, we were at the halfway mark for a third heart sugery.
Let me explain to those of you who don't already know this... Matthew had a (cadaver) valve replacement last March. It started leaking by May and was rated a 2. Docs rate the leak from 1 to 10, 10 meaning it's time for a valve change. By December 1st, it was rated a 4.7. It has been almost 5 months and I'm so afraid it'll be an 8 or 9.
My heart hurts when I think of it. We are trying to prepare ourselves for a surgery this year ... well, as much as you can prepare yourself for heart surgery on your child!
The problem w/ these cadaver valves ~ the surgeons can't say how long they will last. There are too many variables ... they can leak, they can calcify, etc. It all depends on their little bodies. Each kid is different. To me at least, it doesn't seem to be a good sign that his leaked so soon.
Well ... we'll find out soon enough ... With any luck, it'll only be a 5 or 6!
I frequently think of what my e~buddy, Timmy from The Special Zipper says... " it's a roller coaster ride when you have a child with a congential heart defect." What a true statement. Tim is from Australia, he has had his fair share of scares and sugery w/ his adorable little cardiac boy Connor. If you get a chance, you should drop by his blog ...he has written a sweet post about our other e~buddy Dan of 0ddness in England. Dan lost his beautiful 4 year old daughter Bethany two years ago to problems related to her heart.
Dan has been MIA for a couple months now and we are trying to cheer him up.
I thank God for the support we get from other families of cardiac children. And of course from all of our friends and family. Support is what helps get us thru it all.
4 comments:
I am sorry your feeling nervous. i think we all get nervous, we are a bunch of moms who are going to look old before are time :) and it is worth it to see them smile:) they are going to be in high school and we are going to be grey! lol!! We will be praying that his echo shows no farther leaking and that it is doing a good job. We are hoping for only good news on monday. Izzy has a Ct scan in the morning with sedation and contrast and i am very nervous about it.
I know those nervous feelings - I really hope all goes well and you get fabulous results. We'll be praying.
As Matthew's playmate who spends a lot of time with our little hero, I am feeling optimistic about the test. Matthew is so energetic and full of life doing his daily activities, that my gut feeling is the test won't show anything too drastic. I am picking up "positive" vibes" from Magoo. Life is good! grandma wright a.k.a. uma
I will be praying and keeping positive thoughts for Matthew's test on Monday. I hope our little Braveheart comes through the test with flying colors and not any drastic changes.
I love you all so much and will be anxious to hear what the Dr. Says.
Love, Grandma Sue
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