I hate cannulas ...

Happiness is snugged against Daddy ...

It's costing us $206/month to rent oxygen and supplies. (Not counting $185 for the pulse ox which I have yet to figure out!) And right now I am wondering how much we'd have to pay if Lilly and I just threw all that stuff out the window. At night when I put the cannula into Lilly's nose she starts crying. It can take her well over an hour to settle down. By that time it's midnight and I'm so tired I want to cry too. The oxygen condenser is really loud and puts out so much heat that by morning our room feels like a sauna. But it would all be fine and worth it if only the cannula would actually do it's job! But I can't even get the thing to stay in Lilly's tiny nose for long. When I say she has a small nose - I mean it is small. I have to clip the ends of the infant sized cannula a little shorter just to fit more comfortably in her nostrils.

Lilly sleeps on her side and she moves her head around a lot. This motion moves the cannula tubes on the sides of her face and the part under her nose just pops out. It is crucial that she sleeps on her side, so no options there. I've tried tons of tape all over her face to hold the tubes on. And I pin her arms down. But she can just move her head enough that POP! the two nostril prongs slide out and always go on top of her nose. (Not underneath where she would possibly still get some oxygen.)

I was instructed that infants should not have the cannula tubing pulled tight on their skin as it can leave permanent marks. My cousin suggested putting a hat on Lilly and then tightening the tubing some. Great idea! But sneaky Lilly managed to scoot out of the hat. I have been waking up throughout the night, grabbing my flashlight and checking the cannula placement. I pop it back in place but who knows how long it stays. At least I feel better in knowing that the last sleep study showed that Lilly only had two "respiratory events" the whole night and they only required the tiniest bit of oxygen to keep her levels at 100. So hopefully nothing terrible is happing to her because I can't keep the oxygen consistently on her.

I'm doubling my prayers that when she has the bronchoscopy done at her g-tube surgery (May 3) that whatever the obstruction that caused the two "respiratory events" will be found, easily treated, and that that will be that. No one will suggest oxygen be used while sleeping again.

Last week I saw a news article about a mom in court for withholding some parts of cancer treatment from her child. Just imagine this child had Trisomy 18. I seriously doubt the mother would be in court. I mean for Pete's sake - there are so many doctors out there that refuse to treat a child just because they have Trisomy 18. (Because after all, they are "incompatible with life.") Isn't it crazy that some people can be forced against their will to get medical treatment while others that want it are refused? What a mess this world is.

"These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.” - John 16:33