Tuesday, December 18, 2007

Checking in

Thanks friends for the emails. Sorry I haven't been keeping up-to-date here.

I'm 12 days post-op. I'm hanging in there. I took my sutures out on the night of day 10, should have left them in longer like I was supposed to. I was impatient and true to being an EDSer a bit of the incision was open the next morning. (Isn't Ehlers-Danlos fun?) It's covered, clean, etc and I'm not worried. The scar will just be worse and at this point it's just one more anyway.

I've been keeping up the happy face pretty well I think. The surgical healing is going well but I've had frequent spinal cord pain that's been kicking my butt and wearing me to exhaustion.

Add to that this cold that I hate to admit I have but after sneezing half a zillion times tonight, it's hard to deny it any more (dang it). I feel like hammered crap. Being in denial somehow doesn't keep colds from getting worse LOL.

Oh, about my 5 year old daughter's CPAP progress: This whole thing started in March, she had sleep studies in August and Oct 1. After the doctor's office sent a partial script for the machine, the home care company had to track down the rest of it herself. The problem? She said our insurance will probably not cover DD's CPAP. I was shocked. She was submitting it anyway to take a chance but she was about to call the pulmonologist and request another prescription. This time, the script will be for oxygen at night; she is sure insurance will pay for oxygen. DD's oxygen saturation levels were around 69%, horribly bad. I am so aggravated. It's unbelievable she may not get the CPAP, as bad as she is. And with a 69% sat level, no wonder she turns blue. The kid needs help and now we are back in the world of insurance idiots.

It's not the end of the world though and life will go on. I will keep sticking with it and she will get the help she needs!


  1. If it turns out that they don't, let me know. I will send you mine. I cant use it, and they will have do give me a bipap at the very least if not a complete v-pap, which is a variable pressure machine. Mine is a couple of years old, but i'm sure they will help you set the pressure to the correct setting. Just let me know.You will just need to find her a mask, but they have them on craigslist and ebay all the time.

  2. OH! I am so sorry you are fighting insurance! The system is so evil! They literally kill people by delaying or outright denying to pay for vital care just so they can buy the latest jets and yachts. It disgusts me. They have WAY too much power over the healthcare industry! I wish we could stop paying them--or delay payments or only pay small %ages of our premiums--and still get the "benefits" like they do to us! But NO! That would be just the excuse "they" would need to terminate coverage of a high cost person. Evil! I hate it! I wish you didn't have to fight them for your daughter's care!

  3. Keesha,

    Double sympathy to you! One batch is for the darn cold that's caught you in its clutches. They're awful enough when you're feeling normal (is there such a thing anymore?), but it must be sheer misery to be doing all that sneezing with a fresh incision and your cord pain. A lot of people are swearing by Zicam -- it might be worth it to pick some up in the hopes it can escort that cold virus away from you and your family as fast as possible.

    Second batch of sympathy is for having to fight the scum sucking insurance company bastards who seem to have decided that your daughter's ability to keep breathing/have sustainable O2 levels is a luxury. I wish I could still be surprised when I hear of such insanity, but it's just become too common. It's just wrong on so many levels.

    Finally, I had yet another identifying with you grin break out when I read about you removing your own sutures -- early. I'm glad to hear you're taking good care to prevent problems from developing -- I'm really eager that this surgery/recovery be the textbook perfect one you so deserve.

  4. Sats of 69% and the @#$@%$% insurance company won't pay for the CPAP? This is one of the most insane things I've ever heard of.

    (((HUGS))) and prayers for your continued recovery and the fight to get Megs her CPAP.

  5. Billybob,
    Thank you so much! That is very kind of you. I hope to find out something today (Thursday). The pulmo's office claims to have just sent the new script for 02 as back-up. We'll see. Getting her mask wouldn't be hard since the script is on file--just unfulfillable right now. UGH!

  6. Scott, you said it. EVIL!!! After having so many of my surgeries denied, I'm used to it when it comes to me, but I never imagined they would deny a 5 year old daily care like this. If she doesn't get some help she's going to have so many health problems down the road, which of course you already know. It would be less money to just cover the damn machine! ARGGGGG

  7. Hey there HC! Thanks for the well-wishes. I'm taking plenty of drugs and feel a bit better today. I hope you're having as pain-free a day as possible!

  8. Hi goddessonwheels! Is that not one of the most absurd things about her CPAP? I thought I'd heard it all from insurances. :(

  9. Yes it is absurd!!! They'll pay for a $2,000 (at a minimum) MRI with no problem but they won't pay a few hundred dollars for a CPAP for a little girl who has a documented problem. I did some checking and a person can buy a CPAP for a few hundred dollars. The sleep studies probably cost more than the machine. What a freaking nightmare.