Tuesday, June 23, 2015

Life with a medically complex child is... complex

I really wish the title of this post was false. But it is not, and sometimes life sucks.
I am hoping that by posting this, other people may realize how hard it can be, can find comfort in knowing that they are not alone, or maybe have a solution to this mess.
I am trying to
There are several different issues that are going on right now. That's what makes this so...complex. So here it goes.
1) A few months ago our son had a sleep study done. It showed that the bipap machine he was on wasn't doing what it needed to do for him anymore. The doctor wanted to switch to a different bipap but it wasn't FDA approved for kids that small. The doctor compromised for a machine that was FDA approved and could do the same thing.
 THE PROBLEM: this new machine is a ventilator. Even though we weren't using it as a ventilator, our nurses (that weren't vent trained) had to spend a lot of money, take time off, and sit through a 8 hour class to get trained. This also meant that a new care plan had to be submitted to the state so our nurses could get paid.
 THE SOLUTION: our nurses got trained and a new care plan was sent off for approval.
 THE PROBLEM: 3 weeks later his monitors are going off MORE then they were before and the machine does not appear to be working as well as they had hoped.
 THE SOLUTION: have the doctor sign a form saying that it doesn't matter what the FDA says about this other bipap machine, he needs it and he will get it no matter what. AND submit another care plan to the state (now our nurses have more training then they need for this case)

1) Our machine supply company did not tell our doctor that in order to get this other bipap all they had to do was sign a form that made what the FDA said irrelevant.

 2) Our nurses spent a bunch of money that they didn't have to.

 3) I was not notified, by anyone, that we were getting a new bipap until the supply company called and said they wanted to drop the machine off that night.

 4) We got the new bipap on a Thursday and the doctor was off Friday and through the weekend, and didn't give us any instructions or orders for our nurses to follow. Just like in a hospital setting, our nurses can't do anything with out a doctors orders. In our case, every order has to be written down.

 5) Thursday night, the new machine was alarming every few seconds. When I tried calling 2 different "after hours/emergency" numbers for the company that supplied the machine, I got nothing. One said they would call back and didn't and the other hung up on me. Customer service has really gone down the crapper with all of these companies and I wish there was a way I could report them. Or get enough people to ban together and make the companies fix their ways!

2)We got a letter at the beginning of this month saying that SSI has over paid us for the last 3 years and we owe them almost $5,000! And they are stopping his medical coverage until we pay them back!

Let me explain what happens in SSI. They have an algorithm were they take the most money that the law allows them to pay out ($733) minus the "income they count" and that is what they pay us. To figure out the "income they count" they take our wadges minus the allowance for ineligible children minus $200 (not sure where they pulled this number from) minus $65 from our wadges (again, not sure where this number comes from) minus 1/2 of that subtotal minus $1,100 for our (the parents) living allowance. That equals the amount they use for the "income they count" The best part is this is an estimate on what we MIGHT make 2 months from now, based on the pay-stubs from last month that I send in. That estimate is what we get paid. So for the last year, we have actually have had pay-stubs to send in. The 2 years before that, we were self employed and all SSI had to go off of was our taxes, that were filed once a year. (Are you confused yet?)

 1) Money that we don't feel we actually owe them because it was their stupid calculations that determined what we got paid in the first place. 
 2) All of our sons medical supplies which include, oxygen, gtube replacement buttons, gtube bags and extensions, HIS FORMULA, and all of his medications.
 3)We also will lose all of our nursing care...20 Hours A DAY!
 4) All of his coverage for the 20+ doctors that take care of him. We will have very high medical bills and won't be able to give him the care he needs.

THE SOLUTION: We are filing an appeal for the money that SSI is saying we owe and we are trying to get on a different program to cover his medical bills, supplies, and nursing care but won't pay us any money. In the state of WI it is called the Katie Becket program. (at this point I could care less about the money, I just want my baby to get the stuff and care that he needs)

3) We have our first IEP meeting with the local school on Thursday this week because our early intervention therapists (in the state of WI) only come out to a child's house until they turn 3, which will happen next month. Then he will be in school in the fall of this year (where did that time go?) This is not really complicated but it is an added worry and stresser

4) We are having a few hiccups in our nursing coverage and are having a hard time filling all of the hours that we have available. If we don't have nursing coverage then we have to do it. This may not seem like a big deal to some ("Be a parent and take care of your kid", kind of attitude) but for a child that has so many complex issues, this is a big deal.

Thank you for letting me vent my frustrations. I know that things will work out...eventually. If you have any stories like these, I am sorry for what you are going through and I feel your pain. Tell me how you have dealt with your issues. I am willing to listen to any suggestions that anyone my have,. Thank you
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