Monday, February 9, 2009

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!!

9 comments:

Vanessa said...

We are in the same boat sister. Arianna's heart is doing great but she has the pulmonary edema. :(

I just think it's ridiculous the insurance won't pay for it. I'll be praying this gets worked out ASAP.

Do they expect the pulmonary hypertension to go away after being on the medication?

If you need anything, or just someone to talk to, give me a call.

Lots of love,
Vanessa

Vanessa said...

We are in the same boat sister. Arianna's heart is doing great but she has the pulmonary edema. :(

I just think it's ridiculous the insurance won't pay for it. I'll be praying this gets worked out ASAP.

Do they expect the pulmonary hypertension to go away after being on the medication?

If you need anything, or just someone to talk to, give me a call.

Lots of love,
Vanessa

Kathy said...

oh...what does that mean (I know..I'll just google it...)..the pulmonary hypertension?? Are her lungs too wet?

so...does she keep wearing the O2?

oh...we have a friend here who's little man was on viagra for a while (isn't that just funny?)..for the same reason, the stinky lungs.

you know...many people (me included until Isaac) don't realize how hand-in-hand the heart and lungs work together.

I will pray for Vaeh and her lungs.
at least now her heart is in a good place and focus is on her lungs.

have a good week!

jencooper said...

Boo on the lungs!! But yea on the good heart function!!

I hope that you are able to get your insurance straightened out very quickly!!

<3,
Jennifer

Jake & Stephanie Ellinger said...

Ugh... if it isn't one thing, its another. I swear the insurance part of having a needy child is almost worse than having to care for the child itself. It could be a full time job!

Good luck with that one!

mina said...

Great news on the heart function, but I'm sure it was hard to hear about the pulmonary hypertension. I hope the drug does the trick, sure would be better than lugging around the O2. Also, would it be worth contacting the manufacturer directly if the insurance doesn't cover it? What is the cost differential with O2 therapy? Would O2 be more expensive for the insurance company? That might be a good argument to justify the meds. Either way, I hope you get it sorted out!

Sending some extra prayers your way!

Vanessa said...

Just thinking about you guys. Hoping you got the medication squared away.

We're getting ready to head in to see our cardiologist right now. I al ways get so nervous on these days. I'll blog about it when I get home.

Take care,
Vanessa

Tina:0) said...

No meds yet... if I don't hear by noon I'm making phone calls!

The Portas said...

Well...the good heart function is great news! Now we just need to help those little lungs out a bit. I sure hope you can get insurance to cover it. What a hassle. I'd like to hire someone to take care of all my insurance issues, who can do all the worrying for me.

Praying for Vaeh and her lungs!! I hope the viagra helps! :)
xoxox