Bummer...

So, Vaeh had her follow up appointment with Dr. Butto today. It went fairly well, despite a few bumps in the road. Her echo & EKG looked good, with him noting that her heart function itself was good. Basically heart wise she's doing fine. Her lung pressures are still elevated. Meaning she has pulmonary hypertension.

I had heard them throw this around before when she was younger, but at that time her heart was a bigger issue so it was never really brought to our forefront. So, I had never really considered it. But now, since her heart is finally repaired & functioning well, this seems to be our issue now.

Dr. Butto said that basically the oxygen was doing the job, but that its so inconvenient that we can look at other options. He put her on revatio, which if anyone knows about vaso-dilators, this drug is in effect viagra! HA! My 2 year old GIRL is on viagra!! (LoL) This will help to lower her hypertension in the lungs.

Now for the even funner part of my day... insurance won't cover it. UGH!! It took me nearly an hour to find someone who could mix it (as it is a compounded drug) & the soonest they could have it is tomorrow. So, when I get home, there's a message that they can't get it until tomorrow & that the insurance won't cover it. Here we go again. So I called the pharmacy, the doctor's office & I think we've come up with a solution. Dr. Butto is going to call the insurance & basically tell them why they have to approve it. Hopefully it gets approved, because this is her secondary insurance that's denying it & the remainder of the bill is over $100!!

So, overall her heart is great, but the lungs are still an issue. So, if you all would keep Vaeh in your prayers, we'd again greatly appreciate it! As Jon said in the last post, you all will never know how much you all mean to us & the support that you give us! Thank you from the bottom of our hearts!

Oh, by the way - Happy Congenital Heart Defect Awareness week!!