Friday, September 11, 2009

Reduced Nursing Hours

Geez. I have a lot of updating to do!!! I'll just start - but things might not be in the right order. Oh well.

So, I don't talk about insurance, or money or that kind of stuff much. I'm not sure why. Honestly, I think it's because I don't want to be judged about how we get things done, paid for, etc. But I shouldn't be ashamed or embarrassed. And I'm not. So, here's the deal...

We have private insurance through Tom's work. It is not cheap. It is actually quite expensive. However, I feel that we get a HUGE return on our investment. For our monthly payments from Tom's paycheck - we have gotten millions of dollars of medical service. Not too bad if you ask me.

We also have Medicaid. I'm not sure what you know/think of Medicaid or those that receive it. But we qualify for Medicaid through the Medical Technology Waiver. What that means is that we qualify for Medicaid - not because of our income - but because Harlie is on life sustaining equipment. The costs that go along with that are insane. Seriously. And that includes skilled nursing as well.

When we first brought Harlie home, a Medicaid Case Worker (she's a nurse and is assigned to us) came to our house and asked a bunch of questions. She completes a bunch of paperwork. One of the forms is sheet that has points for certain things. For example, she gets 45 points for having a trach, 15 for being tube fed, an X amount of points for an X amount of meds, an X amount of points for being on oxygen, an X amount of points for being on a continuous feed, etc. The total amount of points tells them how many nursing hours for which you qualify. This review happens every six months.

From the day we brought her home, till now, we've qualified for 16 hours of nursing per day (not that we use them all, of course). We had our review on Friday, September the 4th. And our nursing hours went from 16 per day to 10 hours per day. Which, really, is a good thing. It means things are good and that she's getting better and less medically dependant. Wonderful!

But, it also means that we lose our night nursing. She let me give our night nurse (Dawn) a two week notice. So, we have until Friday, September 18th.

And honestly, I think I'm okay with that. I'm ready to have my house back at night. We have been so incredibly lucky to have found wonderful people that want to help Harlie, and us. And they have all been very respectful of our privacy (or lack thereof). Our house has been their house. They really have become part of our family. Dawn has been with us the longest. She started right around Christmas 2006 when Harlie was just three months old. Brandy started in February 2007. And Jennifer came on in the summer of 2007 (after having been one of her main nurses at MCV for two months right after her second heart surgery).

But, when Harlie wakes up after a bad dream, we - her parents - should be the ones to give her comfort. And I want us to be a regular family. At night. Being a regular family during the day - at this time - is impossible.

It's weird to think that after almost three years, we'll be completely on our own at night. Well, except on occasion. Like if we go out of town. Hey - I can dream, can't I? We do have respite care hours that we can use for special occasions.

Of course, should things change in Harlie's status, her nursing hours would change, too. But, that would mean that she's not moving forward. And that wouldn't be good. So, I don't want that.

So... a change is coming. We'll just have to see how it goes.


Janis said...

We've never had night nursing, by choice, but I can imagine it must feel good & bad (all at the same time) to lose something you are used to. Of course this is GREAT that Harlie is improving. Do you know what exactly was the difference for those 6 hours?

Ann said...

We only had night nursing 3 nights a week, but I lost mine when Jack was about 3 years old too - due to our move to Arizona. I like having my house to myself when I'm home and we've been fine without night nursing - except for those times when Jack is sick, which isn't too often. I've learned to function on very little sleep, which I'm sure you have too!

Ann said...

And I love your "share some love, leave a comment" bling!!

Susan said...

It's scary to make the choice to eliminate nursing so in a way it's easier when your hand is forced. I think you'll be happy with the change in the end.

Christy said...

Janis - I don't know exactly what did it. I think it was probably less meds and no continuous night feed. Harlie might have to get a GJ-tube (future post) and if she does, then she'll go back to 24-hour continuous feeds, which will get our night nursing back. But, I'm hoping I won't want it back. We'll just see...

Ann - thanks for the bling comment. I don't know that it's made a difference, but I did think it was cute. Trying to get more trendy on the blog!

Susan - Yes, it has been scary. I've tried to go without it in the past, and I chickened out. But, I really think I'm ready this time. And I agree, I think I'll be happy in the end.