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!

Appendix update, and countdown to New York

I saw the appendectomy surgeon Monday. My sutures are out, the three incisions look pretty good, and by some miracle they are all still closed. The surgeon said no one in the anesthesia department wanted to take my case when they found out how many brain and spine surgeries I've had, but it being an emergency surgery, they knew someone had to jump in there but she said it went really well. I had to laugh when she said if I ever need a general surgeon again to let her know because she would be glad to operate on me again. I couldn't help but giggle and thank her for what she did but that to be honest, I hope to never see her again!

At this time next week I'll be in New York, anxious for news the next day will bring. I pray for God to help me keep my thoughts straight so I can make the best possible decisions. DH isn't talking about it, and my children are too young still to really understand. I hope whatever choices I make, they will come to understand as they grow and mature.