Monday, July 13, 2015

3 Sleep Studies in May

Have you ever been hooked up to this many wires...
Almost all hooked up and ready to sleep
...and still smiled?
Yea, me neither. But this boy does. 
The end result

This boy has been through so much and still smiles (almost) every time I bring out the camera.

He had 3 sleep studies in 1 month because they wanted to re-evaluate if his current Bi-pap machine is working for him yet. We have concluded that it wasn't.

They switched us to a ventilator and a full face mask. That was a huge deal for all of us. Our nurses need extra training. The machine was alarming all. the. time! We could tell that he was not getting a restful good night sleep. Then about 2 weeks later, after the alarm going of 41 times in one night, the doctors decided to switch back to a bi-pap machine that is different from our other one. It has been working great so all is good but, I wish things would would have been communicated better by everyone. Here is what went wrong...

1. The doc ordered a bi-pap and the company said they didn't carry it. But 2 weeks later they did?! Turns out that the Doc had to sign a form saying that it was ok to use it even though the FDA does not want children that young/small to use it. 

2. If we would have just gotten the other bi-pap machine then our nurses wouldn't have needed the extra training.

3.I didn't know we were getting the other bi-pap until the equipment company called me at 5pm and said they wanted to drop it off that day yet. 

4. The bi-pap was dropped off on a Thursday evening. When it was all ready to go at bed time it alarmed every couple seconds. We tried 2 different "after hours/emergancy" numbers and got a hold of NO ONE! (talk about one pissed off momma bear... at 10pm) We got the alarm to stop for the night.

5. Tried calling the 2 Doctors involved in getting the machine...both were out of the office on Friday, so we had to wait till Monday to hear anything. (probably a good thing because it gave me time to cool down)

I am not sure how this system got so broken, or what we can do to fix it, but this whole situation had me steaming mad for weeks afterward. I am glad that he is doing well on this new machine. He only sets off alarms 2-4 times a night vs. the 41 one night, so it is better. And everyone involved has apologized so I guess I will let it slide...this time.

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