Thankful for the small things.

Makily's pulmonology appointment was today.

Ho Hum.

They wanted $710 for our "back co-insurance payment"?

Uhm......WHAT?

No one could explain what that was....first girl said it was NOT a co-pay?

After back and forth banter it was discovered these WERE co-pays. (DUH?) Sleep studies are AT LEAST $1000 A POP, Makily has had three that's $600 PLUS co-pays for office visits that no one asked us for at the visits?

I said I had no intentions on paying $710.

We paid $150 and they saw us.

We'll be paying on that for a while. $10 a month. They want it paid in five months. Wonder if they hold their breath?

sigh

It sucks not to have back up insurance when you have a medically fragile kid.

Wait...isn't this post supposed to be about Thankfulness?

I'm bitching again.

ANYWAY.

The appt went fine. Of course as with EVERYTHING ELSE concerning Makily all the solutions he offered for her have a "will fix this but could mess this up" or even better, my favorite "not guaranteed to work but IS GUARANTEED to cause lots of pain". Let's jump at that option shall we? NOT REALLY!

Here's what we went over:

1. C-Pap is a no go for all the reasons I mentioned and he totally agreed.

2. He mentioned a jaw distraction again. Says he feels the apnea is likely caused by the PRS. Reminded him that we already talked about that and decided not to do it. He then asked me if I had spoken with the Craniofacial team.

*sigh*

I then reminded him that YES Makily had seen Craniofacial since birth we spoke with them about a distraction at his urging over a year ago and they said NO her PRS is not severe enough to do a distraction and that they felt that it would be too much trauma for her.....I agree. Before he brought up removing her tonsils and adenoids I reminded him they were microscopic per the ENT and in no way were causing the obstructive apnea (Didn't I just pay him $150 to know all this....I'm just sayin). He then said that jaw distractions are very painful and that it's not guaranteed to fix the problem.


3. Supplemental oxygen at night. He is on the fence about this but at this point it's the only "solution" I see. His fear is that if she is requiring too much oxygen while she sleeps that her body will become dependant on it (that didn't make sense...all our bodies depend on oxygen right? heh). What he means is that he is afraid Makily will start NEEDING oxygen more than just at night as her body's drive to breathe will not be as strong since it may get used to having oxygen during the night. He says if she only needs a small amount that it shouldn't be a problem BUT if she is needing two or more liters then she could have troubles down the road. Makily needs more breathing problems like she needs a hole in the head. I am not thrilled about doing oxygen at night and risking her body eventually ALWAYS needing it but on the other hand SHE'S TIRED. She's tired A LOT. They even mentioned this at her IEP. I don't know what to do about it.

So we are doing another sleep study. When/if she starts desatting they will put nasal cannula oxygen on her and see if that helps. They will see how much she has to have to keep her sats up. He did say that since she is bigger the apnea may be better but with as sleepy as she is I really don't think that it's gotten better. I'm no doctor though. I just work here.

The good news though is that Makily was SO HAPPY all day today. I just enjoyed watching her giggle, smile and laugh. It was awesome. She is great on car trips. She loves it. I took video.

Here it is:

Make video montages at www.OneTrueMedia.com

See like I said, "thankful for the small things". ;-)