All the hoops

We are HOME!!!

Yesterday was a little more gut punch.

Yesterday was the conversation we all know is true but no one was saying outloud... Jilli's lungs are getting worse as she is getting older and her body is taking bigger hits and since all we know is that it is muscle based but not a cause that there really is not much to do. Oxygen is what is needed... and maybe someday Bipap but our goal is to push that off as long as possible... we have oxygen settings we can go up before that.

We talked about Lydia's sleep and how the other choices of meds she can not use because of her muscle issues so if in a year she is still not sleeping though the night most nights (we typically get one to two good nights a week) then we can talk more about other meds when she is older.

And then we talked about something that makes me want to cry...

I need to back this story up a long ways...

When Jillian started with a feeding tube the hospital had a few outside preferred providers and they set us up with one. We have had them for over 5 years. We have had our ups and downs. Sometimes they do not deliver oxygen on the days they are suppose to... sometimes they deliver busted formula cans that leak all over the place... sometimes they leave oxygen on our front porch when we are not home and do not tell us.

And over the past few years they have cut what supplies we can have claiming that we are cutting into their profits. It is not that our insurance denied the supplies but that they have an odd contract with our insurance company where they get more money the less they provide for us.

While Jilli was in the hospital a few weeks ago they ask how things were going with our DME and we explained all of the issues we have had and they told us about a new DME that has partnered with the hospital. They asked if we would like them to see if this new company could supply everything we need... that has been part of the issue... no other local company could supply everything we need meaning were have been stuck with our first DME. I said sure. And the company came back and said they could do it... they can provide everything!!!

To switch things over though means that our doctor needs to write a new script for oxygen. Nothing is changing with how much oxygen the girls are on.

Our insurance company is now requiring that with a new script the girls need to re qualify for oxygen need. Jillian has been on oxygen since 2015! And her oxygen need has increased over the years.

To requalify for oxygen we need to do a home pulse ox test... and take the kids off of oxygen to do the test.

I'm going to be blunt....

THIS IS SHIT!

Why the ________ should my kids need to be deprived of the oxygen they NEED to prove to the insurance company that they need it. We know they need it. We have documented that they need it.

And pulse ox is not the only sign that they show they need it.

When they are not getting the oxygen they need they play less... they snore horribly... they work harder to compensate... they talk less... they stop growing.... they are less logical. It effects EVERYTHING!!!

BUT... insurance only care about the measurable test...

the problem is that some times they fail that test horribly... somedays their body works so hard and will do everything it can to compensate so they pass the test but then every other part of them suffers and the next day they really struggle. This is common with muscle kids. But our private insurance does not look at that.

I just want to cry.

I need my kids to fail this test and go through 12 sucky hours or insurance will pull the thing that is keeping them functioning.

My head is just dumbfounded.

Why?!?!

Does the insurance company really think that doctors are putting kids on oxygen for the fun of it?

I mean, we work hard to make oxygen fun but it is a lot of work. Work I happily do for my kids. but ugh! My eyes are getting puffy as I type.

This is the shit we go though all the time. It is not the medical stuff that makes me mad. It is not all the supplies that frustrates me. Honestly it is not even the hospital stays that get under my skin... it is the garbage of stuff like this. Of our first company cutting supplies to the point we feel the need to look elsewhere and then the hoops we have to jump though.


Oh and our first DME claims somehow we now unown the IV pole (read past posts about that saga) AND the feeding pump that we have had for 5 years that we previously owned... they claimed that we now unknown a pump that we have a letter saying we owned because when we switched insurance companies our new company did not know that the last company bought the pump so they started charging the new company for a pump rental so they moved our pump out of own status to rental so they could charge our new insurance for an already paid for pump!!!! My head!!!


Today was a hard day at PT again for Jilli... this bounce back is still slow. We are home now though. We have a crazy few days ahead with a meeting with the new DME, a photos for the book cover, a special needs halloween party, and a home meeting for the waver for Lydia because her name just got to the top of the list. But first there is so much unpacking and cleaning that needs to happen...

So off to do that.

Right now I feel weary...

But one foot in front of the other and we will get though this too... we always do