Every once in a while I’ll receive a comment or email that questions my honesty in relating Parker’s story.
One time someone even challenged Parker really being born with an imperforate anus.
‘Cause they’d never heard of such a thang, I must be making everything up. After that I started adding links when talking about Parker’s issues.
Because I want to make it perfectly understood about any and all benefits Parker receives or doesn’t receive, I’ve decided to share one of these comments below. This is one of the more tame grillings I’ve received.
Trust me when I say nobody wants to have to fund raise to cover their child’s medical needs.
Some may refer to it as humbling. To me it feels kinda humiliating.
And it can be hurtful.
Especially when someone comes along and questions your motives.
I’ve actually thought of sending out references to those who have questioned us from others who know our family in real life. Kinda my way of proving what I write really is true.
Instead, from now on, I am simply going to delete any emails or comments
accusing questioning me.
I have better things to do.
Like keep my kid alive.
Ok. I am so confused as to how Parker could possibly NOT get on the Travis C waiver. He is techonology dependant, he has no assets. it doesnÃ¢â‚¬â„¢t make sense.
We have had and still do have MULTI MILLION dollar bills from PCMC, yet we have never been denied care. WE have been hounded when we were there for a way to make a payment but we honestly just told them we didnÃ¢â‚¬â„¢t have any of the money. They stopped coming around. We have allowed them to trash our credit knowing that we could do nothing about it.
I guess I get confused. If you make no money, have nothing and he is technology dependant how could he not get this particular plan of medicaid.
To be eligible for the Travis C. Home and Community-Based Waiver, an applicant must:
* be under 21 years of age at the time of admission;
* qualify for Medicaid based on his/her income and assets (parentÃ¢â‚¬â„¢s income and assets are not counted in determining the applicantÃ¢â‚¬â„¢s eligibility);
* meet admission criteria for nursing facility (NF) care;
* have at least one caregiver trained and available to provide care;
* require skilled nursing and/or rehabilitation services at least five days per week and be dependent on one or more of the following:
– a mechanical ventilator;
– tracheostomy based respiratory support;
– continuous or intermittent positive airway pressure support (C-PAP or Bi-PAP); or
– intravenous administration of nutritional therapy or medication through a central line;
* and choose to receive home and community-based (instead of nursing facility) services.
HOW DOES HE NOT GET THIS. IT IS NOT BASED ON YOU.. BUT HIM. I guess I dontÃ¢â‚¬â„¢ get why he is any different than any of the other kidsÃ¢â‚¬Â¦ I guess not all avenues have been exahusted.
I am confused.
First of all, you mention Ã¢â‚¬Ëœif you make no moneyÃ¢â‚¬â„¢..well, Reed does have a full time job. And insurance. Both of which actually tend to work against us.
PCMC has never refused services. They canÃ¢â‚¬â„¢t. But they sure can make life rough after.
While PCMC may no longer contact you, they still contact us.
When Parker was on O2 and cpap, before he was trached, we qualified for NOTHING. Nada.
But when he was trached and placed on a vent, THEN he qualified for the Travis C. Waiver.
First there had to be an opening on the list. Cause unless one kid goes off the list, another canÃ¢â‚¬â„¢t get on.
ItÃ¢â‚¬â„¢s the way it works.
If youÃ¢â‚¬â„¢ll read in my previous posts, we have been dealing with whether or not Parker can for sure be a qualifying member on this waiver due to the fact that while he is on a vent, it is set on a CPAP setting.
I know I’ve told friends about this battle. They can vouch for me.
He needs the vent only while sleeping. Not to keep him alive. As in shut off the vent and two minutes later you have one dead kid.
He needs it during sleep to keep his upper airway OPEN. THIS is the cause of his PH. Severely obstructive sleep apnea. Along with underdeveloped lungs that he canÃ¢â‚¬â„¢t open wide enough on his own to get enough oxygen.
After Parker’s last sleep study it was determined that even though Parker isn’t on this vent 24/7, it is still a life saving device for him. Plus, both his ENT and Pulmonologist/Sleep Specialist stand behind Parker needing THIS new vent. Even on CPAP settings. To keep him alive.
A traced kid can’t be on a regular cpap machine. And his old vent can’t handle his new settings.
Because of this and his latest sleep study results we are now pretty certain that Parker has a assured place on the Travis C. Waiver. Without fear of getting bumped off by a kid deemed more needy.
Getting to this point has been pure and total hell.
But, even then, there is the fact that Medicaid only pays for so many of a certain item.
This is why anytime someone emails me and offers their no longer needed trachs or ostomy supplies, I ACCEPT. The Travis C. Waiver would only supply Parker with TWO strips of ostomy paste for ONE ENTIRE MONTH.
And some items they donÃ¢â‚¬â„¢t cover AT ALL.
Like ParkerÃ¢â‚¬â„¢s new vent.
Or ParkerÃ¢â‚¬â„¢s PH drug, Tracleer.
There is a TON of stuff that we pay out of pocket for each and every single month. And even with Medicaid we will still be paying for many items out of pocket.
And you bet your sweet butt that we will still get bills from any leftovers from trips up to PCMC, medical supplies and the like.
I wonÃ¢â‚¬â„¢t even go into the backlog of bills for ParkerÃ¢â‚¬â„¢s feeds.
By the time Parker was trached our savings were ruined. Our credit cards maxed out. Loans used up paying for ParkerÃ¢â‚¬â„¢s cares and needs.
If we knew then what we knew now, we’d of simply let stuff go into collections. But we kept thinking that this surgery would be the last. No new meds would be needed.
We had always met our obligations. Why should now be any different?
We had no idea the sum total of Parker’s medical needs as new issues kept being discovered over a period of time.
And we have had THOSE medical bills always staring us in the face. Along with all the other bills that added up before Parker was trached and was considered for the Travis C. list.
Like our co-pay for the $60,000 dollars it cost to get Parker’s tonsils and adnoids out.
And that was just ONE surgery. One of the cheaper surgeries.
Now it is looking as though we will be paying out of pocket for his new vent.
Notice the offer to write letters in ParkerÃ¢â‚¬â„¢s behalf up above in the comment section? I just may be taking them up on that to get some help in getting help for ParkerÃ¢â‚¬â„¢s vent. And if it takes talking to the media, I’ll talk to the media.
Just wrangling gas money to and from PCMC when Parker is in the PICU is a challenge.
We bring up most of our own food when Parker is in the hospital so as not to spend money on food there. Either Reed or I are with Parker 24/7.
I have a sweet friend who drops off groceries every few months to help us get by. Cause grocery money these days is a bit scarce.
And, oh yeah. Here comes Christmas.
If Parker had been allowed some sort of assistance earlier, say when he was on just cpap and o2, then we would have been able to have able to lesson the severity of this financial disaster.
There have been many, many months where we have had to pay thousands of dollars out of pocket for Parker’s meds. We did this by using credit cards and money donated to Parker’s medical fund.
Cause our pharmacy donÃ¢â‚¬â„¢t give out credit.
Years of that, plus all of the other bills, takes one hell of a toll.
I have been very honest in my blogging and in sharing our story.
Reed and I live this each and every day.
And it sucks. Big time.
My kids live the stress too. The last thing you high school senior wants to hear is that their college fund went to pay medical bills.
But this is our reality. And we’ll make it through. We are a strong family. And we are dedicated to Parker.
Hopefully, that puts an end to any and everyone’s confusion.
Feeling like I need to defend what I write on this blog along with the amount of worry and effort it takes to keep Parker alive is simply the straw that brakes the camel’s back.