A few days ago Abby's cardiologist called us with her MRI results. He explained that her valve leaks approximately 50% of her total volume of blood back into the heart on the right side. Her right ventricle is somewhat enlarged since it has to work a bit harder to supply her with all the blood she needs. He explained that from the MRI results it is obvious she will need surgery some time soon. We were also asked how well she tolerates exercise and physical activity. I reluctantly admitted that she didn't keep up with her peers well. She gets tired when running and playing too hard, however, she does carry on normal daily activities without a noticeable drain on her little body. The cardiologist then said, "Well, if you would like to schedule a surgery, it may help with her exercise tolerance and her small size. Just let me know so we can get it scheduled." There you go.....like picking out which color you want your dress to be or what kind of pie you want for dessert!! Well, we talked to her pediatrician who also talked to her cardiologist and we all decided that for now, Abby is just fine. The surgery isn't pressing. She likes to play and have fun but isn't what anyone would consider a sport's buff or extreme athlete. Since her favorite activities involve reading and playing the piano, the surgery can be deferred at least until next year! Whew!!! What a load of stress off for now. Now I can hatch my crazy scheme to get her back to Boston Children's Hospital for a new (at least new in the US--it has been performed in England and Canada since 2000 and 2004 respectively) procedure. It involves using a catheter to go into the leg and up to the heart and then "popping" a new valve in place. The old valve (at least what little bit is left of Abby's) actually grafts itself onto the new valve (called a Melody valve). No bypass machine, no cutting the chest or stopping the heart. No ICU stays for 6-14 days. Just a simple procedure and overnight stay in the hospital for obsrevation. Within 2 weeks patients are fully recovered! I've contacted the surgeon who has been doing these procedures and had a copy of Abby's records sent to him so, we'll see what pans out there!!! However, it is kind of like having all the planets align. She first has to be a candidate for the surgery, then we would have to see IF our insurance would even consider covering it. I know it would be easier not to jump through the hoops but, if there was a way not to go through open heart surgery again...I would do almost anything to avoid it. So, our fingers are crossed!
Wednesday, May 20, 2009
Breathing A Sigh of Relief!
A few days ago Abby's cardiologist called us with her MRI results. He explained that her valve leaks approximately 50% of her total volume of blood back into the heart on the right side. Her right ventricle is somewhat enlarged since it has to work a bit harder to supply her with all the blood she needs. He explained that from the MRI results it is obvious she will need surgery some time soon. We were also asked how well she tolerates exercise and physical activity. I reluctantly admitted that she didn't keep up with her peers well. She gets tired when running and playing too hard, however, she does carry on normal daily activities without a noticeable drain on her little body. The cardiologist then said, "Well, if you would like to schedule a surgery, it may help with her exercise tolerance and her small size. Just let me know so we can get it scheduled." There you go.....like picking out which color you want your dress to be or what kind of pie you want for dessert!! Well, we talked to her pediatrician who also talked to her cardiologist and we all decided that for now, Abby is just fine. The surgery isn't pressing. She likes to play and have fun but isn't what anyone would consider a sport's buff or extreme athlete. Since her favorite activities involve reading and playing the piano, the surgery can be deferred at least until next year! Whew!!! What a load of stress off for now. Now I can hatch my crazy scheme to get her back to Boston Children's Hospital for a new (at least new in the US--it has been performed in England and Canada since 2000 and 2004 respectively) procedure. It involves using a catheter to go into the leg and up to the heart and then "popping" a new valve in place. The old valve (at least what little bit is left of Abby's) actually grafts itself onto the new valve (called a Melody valve). No bypass machine, no cutting the chest or stopping the heart. No ICU stays for 6-14 days. Just a simple procedure and overnight stay in the hospital for obsrevation. Within 2 weeks patients are fully recovered! I've contacted the surgeon who has been doing these procedures and had a copy of Abby's records sent to him so, we'll see what pans out there!!! However, it is kind of like having all the planets align. She first has to be a candidate for the surgery, then we would have to see IF our insurance would even consider covering it. I know it would be easier not to jump through the hoops but, if there was a way not to go through open heart surgery again...I would do almost anything to avoid it. So, our fingers are crossed!
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8 comments:
Good for you for investigating ALL of your options. You are her advocate and you are wise to try and make the process less invasive. PCMC is great, but if you find something better, go for it! We'll keep our fingers crossed for you. The insurance hoops and all of the red tape is annoying. We feel your pain. Good luck!
That is some good news...let's just hope that your insurance is going to pull through...I will keep your family in my prayers.
good luck and we will cross our fingers in our prayers for you!
Medical science amazes me. I hope for your whole family (but particularly Abby's sake) you are able to do the less evasive procedure. Good luck with the insurance red tape portion... but Abby is lucky to have a mom so aware and advocating as you are. Our thoughts and prayers will be with your family!
That is good news! (It seems the insurance company should be all about a less invasive procedure.)
Wow! Good luck with everything! You never know with the stupid insurance companies, but whatever happens will be the right thing, right? Glad it doesn't have to be immediate anyway!
What great news! I hope things turn out well!
Wow! I guess I never realized how fragile she is! I have to agree with everyone else and say she is SO lucky to have a mom who is willing to advocate for what is best for HER, not necessarily the easiest for those who have been looking at her situation. (medical personnel) Let me know if you need anything...We will keep you in our prayers!
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