Rambling

Parker came through the procedure with flying colors. He was mad as a hornet when he woke up. And he, as usual, was especially mad at me. Cause you know it is always MY fault when he has to have stuff done to him at PCMC.

They discovered SEVERE diversion colitis.

He will be having the next part of his pull through the first of November. He is at the proper dilator size, but his scar tissue is still ‘active’. So we need to get opinions on continuing with dilations after surgery. Because the only thing that will stop the bleeding is closing stuff up. And things with the bleeding could cause forever damage if we don’t address it.

Cause, you know, at our house we simply don’t do easy.

Then there is the HUGE deal over Parker’s ventilator. And I am so mad at this.

Parker’s last sleep study showed that he has been VERY under-ventilated. His trach is too small.

PLUS:

When Parker first was vented, his vent used to constantly alarm with a ‘low volume’ alarm. We called out the RT several times to address this issue. He finally told us that this was an ‘unnecessary alarm’ and simply turned it off.

Note that ONLY an RT can turn off this alarm. A parent can turn it down, but can’t turn it off.

Come to find out, it is VERY DANGEROUS to have turned this off. This low volume alarm is there for a live-saving reason.

Angry doesn’t begin to cover it.

Did I mention that Parker’s PH pressures are slowly, but surely starting to rise again?

So the new sleep doctor has ordered NEW trach settings. And a new vent. The latest technology. A smaller one the size of a computer.

We were thinking that these new settings would finally end the question of whether Parker should qualify for Medicaid.

A good thing, right?

Well, except Medicaid will not cover this type of vent.

And my insurance just called and told me they won’t either.

These things cost THOUSANDS. THOUSANDS.

Sigh, what else is new, eh?

But they are still supposed to bring one out today and set the settings properly. The sleep specialist wrote that no substitutions would be excepted.

And guess which RT is the only one certified to do this? Yup, the genius that turned off the low volume controls in the first place.

So, I need to call up to PCMC and ask Chris, the vent RT there, if she will make a house call and check things out here. Cause I simply refuse to trust Genius again.

I woke up today in hives. Itching. Between the schooling, Parker’s cares, the medical stuff, my other son who is really struggling, my missionary who is living smack dab in the center of a gang war, (people are getting shot right before his eyes), Parker’s rising PH values, financial stuff…..I think I have exceeded my Waterloo.

I need today to try and regain my sense of balance.

I’ll be better tomorrow.

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We’re Up At PCMC Today

Parker is having his scope today.  Under a general anesthesia no less.  Made more complicated by severe Pulmonary Hypertension and...

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