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.
I’m so sorry that things are so complicated right now. Praying that everything works out.
What a couple of days you have had. I admire your strength and know that things are going to get better.
I feel for you. You should totally be able to trust your RT shouldn’t you? Make sure he knows you’ll be checking up on him – so don’t screw up!
I am so sorry for all that Parker and your family is dealing with. It seems so unfair that even through the physical you have to deal with all the morons that make it harder. Praying for answers and for cooperation and peace, and wisdom for the hands that care for Parker.
Twitter: livingingrace
says:
Tammy- so sorry to hear about everything. I’m praying for ya. ALot
(And, can you email me your address? I need to send ou something). Love you- K
You know, I’m not one for socialized medical care, but when I read this type of nonsense, I know there has to be a better solution than what we have now!
That’s just crap, and I am very sorry.
Poor Parker. The little guy needs a break as well.
Twitter: therextras
says:
More and more prayers for your family.
So thankful Parker did so well today…as far as anything else…praying that is all works out.
As far as the RT super genius–I hope you made him explain himself for putting Parker at further risk–it so scary how incompetent some of these medical professionals can be.
Hope tomorrow is better.
oh honey, I don’t know what to say to you except that I am sorry and I hope that things will start to look up.
Please conitnue to stay strong – even though it is easier said than done – good things will turn out in the end.
It’s amazing how many “certified professionals” are complete morons! Hopefully everything will get set up and go smoothly today…
Oh Tammy. WHY cant you get a break with things???? It isnt fair. I am so relived thought that Parker came through really well!! THAT is wonderful news!! I was getting really worried. I am praying that they can get things under control now! AND
SORRY, I hit the wrong button!
I was just saying, I would have a hard time acciepting that same RT back in my house! He has a lot of explaining and apologizing to do!!!
I LOVE you Parky!! My precious hero. Big smoochies and hugs to you sweetie.
Oh Tammy my heart just breaks for you! I do hope tomorrow is better and “Genius” will do is job correctly this time!!!
Never a dull moment. The Medicaid thing sucks. Sorry.
Hey, no fair hogging all the trials and troubles all to yourself!
Man I hope you can get the issues with the vent worked out – including how to pay for the new one. Wish I was there to help out in some way …
Praying for you to have the strength and health YOU need and for Parker too.
Medicaid is so stupid! I just wish they would come out to my house and live there for one day — they woudl run back with their tails between their legs!
Glad Parker did ok with the procedure. No matter how small, it is always so scary to say good by in pre-op!
Thinking of you all.
Praying for you guys.
Sorry to hear that everything is going bad right now. I am praying right now that God will give you His amazing strength to get through another day.
Love in Christ,
Suzi
It is so irritating when medical professionals do not do their job correctly. As non-medical profesionals we are forced to trust their judgement. I pray for you to feel better, for the hives to go away, and for “Genius” to not be led by his ego and instead learn from this so it never happens again. As always I pray for your brave little hero! I also pray he does not stay mad at you for too long and instead gives you a great big hug! God bless you!
Have you written to your Congress man or woman? It is possible that they could help with the Medicaid thing. It would not hurt to ask. And write more than one letter – the government can be moronic too. Maybe they could help? I personally would love my tax dollars to go to Parker!
Oh thank God he’s okay. I was worried about him. Stay strong, Parky. And when that RT gets here to activate your new trach…throw your ostomy bag at him.
I Love what Katie said to do with Parker’s ostomy bag!!! That “genius” deserves it. I can’t believe how many incompitent “professionals” are out there. My thoughts & Prayers are with all of you. Stay strong. Things just have to look up for your little guy!! You all deserve a much needed break.
Just cause medicaid says no, doesn’t mean that is final. You’ll have to appeal (which is a huge pain in the rear) but please don’t take there no as your final answer.
Medicaid is also known to deny hospital beds, wheel chairs, other necessary items, you appeal and they buckle and say yes.
Twitter: marriedlife
says:
So glad to hear that at least you have some answers and that Parker came through the procedure okay.
I have something for you, but I can’t find a contact email. Will you please contact me?
Thanks!
Parker, you are one tough dude…love ya.
Praying on all issues. ox