Day 646 - March 23 - Excitement and Requests

Forgot to tell y'all about all the excitement this weekend. Saturday morning at about 0445, Connor's respirator failed. Yep, just quit working, without giving a failure alarm or anything. Just stopped breathing for him. As God had laid out, Cherié was actually up with him at the time, and so was right there to respond quickly. We are blessed that God has brought Connor a long way since the beginning - when the vent failed, he didn't panic, and was able to take some breaths on his own until Cherié was able to take over breathing manually for him. I quickly got him set up on his chair ventilator (that would be the one our insurance company says is "medically unnecessary" and refuses to pay for). Once that was taken care of, the boy was all good again.

It was a bit of a reminder of how far we've come. When this sort of thing happened early on, Connor's heart rate would plummet, and there would have been much running around and wailing and gnashing of teeth. This episode had none of that - just a stable young man, a rapid response team, and everyone doing what they needed to do.

Of course, we had our provider bring us a new ventilator; and the new one, while taking a bit for Connor to get adjusted to, is working out fine. But I continue to be amazed (and a bit frustrated) that the insurance company thinks that the boy only needs one ventilator. The fact that we have two vents saved them from having to pay for an ambulance ride and hospital stay while we replaced the broken ventilator. So - it boggles my mind that the insurance company thinks it's not a necessity to have a back-up. I guess it's time for another letter to the insurance gurus...

On a different note, I would ask for your prayers for Connor (and us) today as he has multiple procedures at the hospital this afternoon. A couple of different CT scans and another procedure after that will tax both his patience and our ability to cope. Please be praying that the hospital is ready to help with a man in his situation - orderlies to help lift, nurses to deal with all the details the rest of us take for granted, and technicians who know how to deal with ventilators in these situations. For the rest of us, getting a CT scan is a lot like getting an X-ray. For Connor, it's an exercise in frustration, problem-solving, and personnel management. So we would greatly appreciate your prayers.

Also, be praying that the tests would clearly give the doctors the information they're seeking, so they can have the information necessary to address their concerns.

We greatly appreciate your prayers and support!

Eric

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