Reincarnated As A Mother

Friday, November 6, 2009

Hit The Road Jack, Don't Ya Come Back...

I am celebrating in the streets!! Norco picked up Kean's monitors yesterday. So for the first time since he entered this world nearly three months ago-- we have a "wireless" baby. No more ear piercing alarms going off in the middle of the night. No more plugging the little guy in!
Nurse Nancy came and weighed him and he is now a whopping 9 pounds even. He's doing great. I will say, as he grows, we are starting to see more of a Down's look. One of his therapists told me the other day that as he gets bigger, I'll also notice more of his "limitations"-- right now as a newborn, he's not doing much. But we'll start noticing more as he grows. That was a bit of a deep breath moment for me-- but I'll keep planning on our little guy proving the experts wrong and beating expectations.
One final thing worth mentioning-- something that has me a bit hot under the old collar. Last time I took Kean into the doctor's office, Dr. Sandstrom mentioned that she was going to put in a request with his insurance to see if he will qualify for a series of shots called Synagen. The shots are to help keep him from getting the dreaded RSV. RSV (before Swine Flu) was the big worry for premies and babies with compromised immune systems each winter. It's a nasty viral infection that attacks the respiratory system and hospitalizes tons of babies. Anyway, she mentioned we'd have to see if the insurance company would approve the shots-- since it is very expensive.
So yesterday, I get a phone call from some specialty pharmacy back East saying he's been approved which was a big deal. And that the shots would be completely covered. I happened to ask how much the shots cost and are you ready for this???? She said 3000 dollars per shot. He's been approved for five. That's FIFTEEN GRAND. I'm like-- what in the world is in this shot? Interestingly, she said the shot creates a false immune system in the baby to ward off RSV specifically. That's great- but 3 grand?
I asked our home health care nurse about it-- and she says its a great shot. (And yes, I'm relieved he's getting it) but it still sounds ridiculously overpriced. Nancy said when they first started giving the shot 10 years ago-- it was "only" $500 and they thought it was overpriced then. Don't tell me the ingredients in the little vial have gone up that much in a decade. Nancy said it's only one company that makes it and has the patent.. so they can charge whatever they want. No wonder insurance premiums are so out of control. All together now, can we spell GREED? I just find this a bit insane. Something definitely needs to be done to overhaul our medical system-- I just don't have much faith in the clowns in Washington to do it right.

5 comments:

Mama of 2 Hapas said...

Pharmaceutical companies are a big part of the problem, I agree. My uncle gets for his throat cancer that are $8000/shot....his insurance has been covering them so far, but are denying coverage this next year. I'm not familiar with that shot, but "building a false immune system" is basically what a vaccine does? Sounds the same to me. And the flu shots cost $30 each? A virus is a virus after all. Don't even get me started on insurance companies and the clowns in the Washington. I'm just thankful your little guy is gonna get the shots!!

Mama of 2 Hapas said...

Ok, I looked it up, palivizumab? It is only one company that makes it, and it only prevents severe illness, doesn't cure it, or even prevent it in the first place.

Melissa Snyder said...

That is great that Kean is approved for that RSV shot. I sure wish Andrew had been approved when he was much younger. When he was 3 months old he got RSV and was in the hospital almost 2 weeks. It is really bad stuff and he still has lasting effects from that. He will take a while to fully recuperate. Bless his little heart. He is going to prove all the medical professionals wrong. Down's have so many abilities and talents. I have a feeling he is going to blow them out of water.

Shellee said...

None of us have faith in Washington.

It's great to hear that Kean has gone wireless! You might actually sleep a little better now! Congrats!

Kylene said...

Hi Lonni,
I'm one of your cousins on the Packard side. I'm Uncle Bob's 10th child, Kylene. My third child, out of five, has Down's Syndrome. It was also quite the start up with her. I know you are probably sick of opinions/advice and probably are ready to just get on with life. But if I can just give you one piece of advice it would be to make sure you don't give into the falsehood that your son will never amount to anything. These sweet children are quite the blessing for families and at the same time a TON of work! But it is all worth it. Take advantage of ECI therapy if that is available, eat healthy food, and get him active. Not that I am an expert (far from it) but I would love to chat with you if you ever would like to chat. My email is kylenehayes@hotmail.com. Congrats on having another sweet angel join your other sweet angel girls!