The Scoop (and a Pity Party)

Yesterday was just a CRAPPY Cystic Fibrosis day.. that's all there is to it.

The phone rang about 10:00.. and it was a prescription manufacturer, letting me know they'd explored our new insurance policy and we'd need to pay $5500 (which would equate to 1.5 months of this particular drug) before our price on the drug would drop to $48. Whaaaaaaaaaaaaaaaat?!?

De ja vu... here we go again! I told them there was some mistake, as I had specifically checked on coverage for every drug she could need PRIOR to selecting the policy... and luckily... I was right! After about a 4 hour rat chase of calls to insurance companies, the doctor, and the script company.. it was agreed, that they were mistakenly trying to send it to an out of network pharmacy....and so we SHOULD be receiving this drug soon.... which is good, because she needs it!

Literally..as I was winding down the conversation with our insurance company, and the knot in my stomach was subsiding... Children's Mercy was beeping in... so I clicked over expecting to fill the pharmacist in on what BCBS had just told me.... instead, they were calling with Kambree's results from last week's culture.

They weren't good. Despite being on a very strong inhaled antibiotic, twice daily since November... she is still culturing pseudomonas. So since April, when we first learned that she had Cysitc Fibrosis, we've only had one culture that didn't show it.... and that's just pretty darn discouraging.

The doctor said they don't believe it's colonized or in mucoid form.... so that is good. I've googled enough to know that we definitely don't want it to do either of those things...  and so, we desperately need to kick this. But how???

Apparently endless hours of treatments and thousands upon thousands of dollars in prescriptions, isn't cutting it....and that's pretty frustrating.

I really don't know what all of this means for her long term health. I know I cling to phrases that the doctor says, like.... "every day spent with pseudomonas, is a day that lung disease is worsening...", and they resonate over and over again in my mind...  but in some ways, I'm too scared to ask the big questions. What does this REALLY mean for my daughter?  What if we CAN'T get rid of it? What if the 7 years of her life that she was untreated, has left us unable to get control of this bacteria?

And maybe there aren't answers anyway. Maybe it's such a case by case scenario, that you just face the facts you have each day... and don't spend time dwelling on the "what ifs".  Ahhhh, if it were only that easy!

So for now... we finish the current  round of antibiotics she is on...we are adding in another inhaled step to her evening treatment... making that one now, about 2 hours (ugh)... then we head back to Children's Mercy on the 11th of Feb. At that time, they will x-ray her lungs, see if there is any cause for further concern... compare it to last April's x-ray... and see where we go from here.

Luckily, yesterday, as I was having a wallowing kind of day... .Kambree was with a dear friend all day... having the time of her life. It was so nice to know she was out doing normal kid stuff, and to not have to mask how I was feeling.... the younger two are pretty well oblivious.

I wasn't sure whether or not we should tell her that it's still not gone... but ultimately decided that we should.... and then as soon as we did, I wished we hadn't. She was heartbroken... and cried, and cried, and cried.... throughout the majority of her treatment.

We had talked at her appointment last week, about trading out a few things morning/night as it pertains to her treatment... and it was going to decrease the length of time of her evening treatment... which she was so excited about... instead.... it is now getting any longer.

I am thankful that we have medications and treatments to slow this disease... I'll start by saying that... but if you'd allow me to have a pity party... just for a few lines of this blog... I think I'd like to throw one.... and at the risk of sounding negative... I'm going to be brutally honest.

Every single morning... and every single night... those treatments affect our lives... nothing is simple any more.... you can't be spontaneous..... your mind is constantly analyzing when it's time to do the next one.  Most of us can't even find the time to commit to daily exercise... or a daily quiet time... those are 30-45 minute activities you are trying to fit into an already busy life.... and these treatments are more than 3 hours a day now. Can you even imagine?

Dad gets home from work.... we eat... they wrestle... and the entire time... I'm watching the clock... thinking... it's 8... if we start RIGHT NOW... she'll be done around 9:45-10---but wait... she hasn't taken her bath yet... now it's 10:30... and just like that, our night is gone. Add any other normal evening activity for a family, and again... imagine where that 2 hour treatment leaves you.

I hate it. I absolutely hate it. I hate how much of her childhood is spent wearing that pink vest... I hate how many times I have to interrupt whatever normal childhood activity she is doing.. and tell her it's time for a treatment. I hate it when she asks me questions about her future... and she tries to wrap her head around the fact... that this is FOREVER... unless a cure is found... this is her life.... these are the cards she was dealt. 

Ok. Done. Felt good while I was typing it to get it out... and as soon as I post, I'll probably regret tipping my cards and letting everyone know how I really feel.... or maybe just how I feel at this moment... because the worst part of feeling that way... is that the very thing that is so time consuming and frustrating.... is the very thing that is prolonging her life.... so how can I hate it??? So maybe it's more of a love/hate.

Either which way... it's our new reality. I guess I thought we'd be used to it by now.. and unphased, but it seems like it's the opposite.... as time goes on... I'm realizing that this is not going away.

I need to move on with my evening... so I'll just ask for prayers.

Prayers for VANISHING pseudomonas on Feb. 11!
Prayers for the most beautiful set of lungs ever seen on a 7 year old when they take a peek!
Pray for Kambree's spirits... she is going through a lot of the emotional side of this... and sometimes we find ourselves at a loss for what to say!

Thanks for following us! We are so blessed by the support system our AMAZING GOD has blessed us with. As always, we NEVER doubt that he will carry us through the valleys, just as he's led us through many peaks! Our circumstances, do not change who HE is.... we will praise him in the good... and we will praise him in the bad!

Much love to you all!