Denver Children's Hospital is a wonderful place!! I am so glad we chose to come. Dr. Ivy and his team of nurses and nurse practitioners were fantastic. They spent as much time as we needed them to and Dr. Ivy even pulled up a chair and sat to answer questions.
So here's the end result--- Mattea had an echo and an EKG and some labs done. Plus they reviewed her cardiac cath results from Albuquerque. She has Eisenmenger's Syndrome. The blood pressure in her lungs should be way lower than her regular blood pressure and hers is the same. Unfortunately this means she is definitely not a candidate for surgery, nor will she likely ever be able to have her heart repaired. In fact, he said the surgery would most likely shorten her life rather than lengthen it. But they are major pulmonary hypertension specialists and were very encouraging about medical management. And seeing her response to the low dose of Viagra that she has been on has been very encouraging to us. So yesterday they discontinued her Captopril and raised her dose of Viagra to a more normal dose. When they checked her O2 sats on her 2 liters of oxygen they were 90! So he said we could wean her off the O2 during the day as long as her sats stay above 85. I am curious to see if the higher dose of Viagra has any more effect. They want to follow her and see her every six months, with in-between check-ups in Albuquerque, with a new cardiologist. (The ones who followed her 2 weeks ago) Mattea has a sleep study in the next few weeks, and after we have those results we are supposed to get back with them as they will arrange for her to have her tonsils out here in Denver if they won't do it in Albuquerque. Of course, Daddy says the tonsils come out in Denver!
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YAY! So glad for a positive meeting! She's just at the beginning of Eisenmenger's (which is great!) if her pressures are equal, that's encouraging to hear :) So glad you have a great team and a plan in place for your little miss!! :)
ReplyDeleteOh, wow! That's great that you like Denver so much! Eisenmenger's sounds kind of scary, but I'm glad that you have doctors who know what they are doing!! Has anyone said anything about a heart transplant at all?
ReplyDeleteIt sounds like you had an encouraging visit. I pray things continue to go well for Mattea.
ReplyDeleteIt is so amazing what you can learn from a real heart doctor not one who only wants the easy cases.
ReplyDeleteEven though we missed the window to repair her heart by 6 plus years they have given us a clear idea of what her life is going to be like which is more than we could get locally.