Sunday, August 16, 2009

Reform this...

While so many are getting worked up about healthcare reform, I have found myself strangely taking a back-seat to all the hubbub. And tonight, I think I was able to put my finger on why that is.

Dealing with health care is my every day life. I don't have time to change the system (that absolutely stinks by the way)...I am too busy fighting with it day in and day out.

Right now, on my list are the following:

Called yesterday to re-order Max's formula and enteral supplies so we get them before we run out next Tuesday, yes, exactly on Tuesday. They should all arrive Monday.

Still trying to get Max's talker approved. It was ordered last November. The company that was giving us such a hard time with it decided to go ahead and sell to a much bigger company and just drop us into the lap of the new company. Monday morning I am calling to speak with our new representative there and ask where we are in the process. Last I heard, we are going to have to start all over again. Insurance issued a check back in March for their portion of the talker, $4,900. There is a remaining $5,000 that needs to be paid by Medicaid before we will get it.

Talked all last week to our DME guy about Max's stander, ordered in May. It's been denied twice by Medicaid. They don't see why we don't choose a cheaper one. They are appealing again. I've contacted the company who makes the stander to see if they can help, and they will have their funding team look at the letter of medical necessity.

We've been looking at and trying our hardest to figure out just how exactly are we going to be able to afford a vehicle that will work for Max. It is getting extremely difficult for us to lift him into his car seat. At best, we can find a van that would JUST fit us and Max for around $50,000. That wouldn't include extra space for diaper changes, or other passengers. To get those things, we're looking at around $100,000. None of which would be covered by insurance or medicaid.

Max is outgrowing him "kick-around" wheelchair. He has a more structured chair, but doesn't tolerate it much. So we have his jogging wheelchair...which he's up to the top and hanging off the end. With all the other equipment trying to go through Medicaid right now, and the fact that we got the brand new chair that he won't sit in at the beginning of the year, Medicaid won't pay for a new one. I will be contacting a local non-profit to see what they have in the way of chairs that might fit him. Then I will fill out their 20 page application forms to see if we will be approved or denied.

I got the paperwork in the mail today to re-evaluate his status for Medicaid. Yearly they look over everything and determine if he still "needs" assistance. I have to look through all the paperwork and sign it and get it back in within a week so we don't lose the Madicaid waiver.

I have to look for a new OT, since his current one will not be working for the agency that sends her out after Sept. 10th. She was great with Max, and he worked hard with her. But I will need to find someone who is not a contract worker, as I am not in the mood to get used to someone, and Max get used to them only to have them leave in 6 month's time.

Monday will be another phone call to Neurology to check up on Max's lack of sleep. We will likely be coming in for EEG, Video EEG, or an overnight stay for full observation. This could likely mean more medicine (which we pay for out of pocket from a pharmacy in Canada, because it is STILL not FDA approved). Or a whole new medicine that we will have to learn.

I will be contacting our PT about a new therapy suit that will help with Max's body tone. I'm not holding my breath that it would at all be approved, since it hasn't even been a year since we got his last suit...which he has of course outgrown. Seriously...KIDS GROW!!!!!! That's the whole point of all of this therapy and treating for life!

I will be calling the pharmacy to check on a medicine he takes for him metabolic disease to see when exactly it will be in stock. Since Max is the only patient in the entire Walgreen's database that takes it, they have to order from the manufacturer. Which is perfect, since we are completely OUT!

You see, these are just the things at the top of my mind at 12:30 on a Sunday morning. Things that keep me up. My list of health care issues that are faced on a daily and weekly basis around here.

So at the end of my day...the fighters for their side of health care reform, can have their fights. They can yell and picket at the townhall meetings...they can agree completely with a totally new system. Because there are people in this country that just like to argue.

And I will fall back exhausted, without an ounce of fight in me over things that the majority of the public doesn't even understand. Just wishing that some of those people so heated about it all would make it so even one of the things on my list was easier at the end of the day.


Maddy said...

We don't have health issues per se but we do have all the therapies which theoretically we can claim on our medical insurance.

Admittedly coming from England I have a socialist take on the health reform issue but I can't see anything satisfactory happening any time soon and with the everyday load of 'doings' there no time to really reflect upon the issue.
Best wishes

Deana said...

Hi Maddy! Thanks for visiting!

We lived in Sheffield, England for a while in 2008. Thankfully, Max was healthy enough while my husband was in the interviewing process with a company in London, that we didn't need to use the health care over there. But the comfort in KNOWING we would be taken care of if he did get sick is not something we readily have here.

The closest thing we have to that is that Max is in a study at NIH (Nat'l Institutes of Health), and he will be taken care of at no charge because he is in the study.

But like you say, in the "doings" of life there is so little time to reflect on it, and we are the ones who could actually make a case for it!

HeatherS said...

Ugh....the fight is exhausting!!! Have you heard about Kids Mobility? They are a non-profit that might be able to help with DME equipment....we got our stander, a gait trainer and kid kart through them. Let me know if you would like their information.

Is Max on Vigabatrin? Samantha was on that for her Infantile Spasms. Also, wondering what metabolic med he takes?

Good post...keep up the fight :)

Deana said...

I have donated equipment to Kids Mobility, they are the "local non-profit" I was speaking of in the post. They are great. They helped us get his chill-out chair by Freedom Concepts, along with Variety Colorado. (Have you seen those? I bet Samantha would really like it.)

Max has been on Vigabatrin for his Infantile Spasms since he was 1. It is still working, so we haven't added anything new...but we will likely change or add Keppra next. But again, don't fix what's not broken! His last EEG did show that his seizures aren't the spasms anymore, but have changed into Lennox Gastaut syndrome, something that a lot of kids with infantile spasms change to. We'll get more of a picture of how his brain is growing and doing next Tuesday with our MRI/Pet Scan.

Max has a metabolic disease called methylmalonic acidemia with homocysteinuria. (MMA Cbl-C) We takes hydroxycobalamin (very high dose of b12) injections daily, anhydrous betaine powder, choline chloride powder, folinic acid, and carnitine.