puff the hope pipe

Okay...so I know I was going to be all mum n' stuff. And I might yet. But I got wonderful news this morning...freeing my fingers.

Let me back pedal a bit first though.

See...I know exactly when this pissy depressed black cloud sank around my heart and filled me up with reclusive sadness.

It was during a phone call with Dr. Rockstar's nurse a week or so ago. That very conversation filled my heart with dread so heavy that I sank to the couch breathlessly. Suddenly breathing was not as easy.

See...I discovered during that phone call that Medicaid can be brutal to work with at times. And she wanted to prepare me that 20% of the time things do not move in the right direction. I know 20% should seem insignificant. But the day Trevor was diagnosed with a rare & catastrophic epilepsy gave me a new perspective on smaller odds scenarios. Although some of my worry-wart comes honest. And so that 20% has been hovering relentlessly over me for the past two weeks. Stealing every thought but it's own from my head. And heart. Focusing has been impossible. Sleeping elusive. Eating...even chocolate...comfortless.

I have been freakin' stressed about this.

Especially when she told me point blank that it was unrealistic to think if we were denied I could just fund-raise the dough. Sudden clarity came on as to why every other person in the office I'd asked about the potential of setting up payment plans had completely blown off my question. Those 'fraidy cats. Poor Nurse Ruth had to give that one to me. And she had the guts to say it live. And not via email. I respect that. Even if I think it's crap that parents have to hear...to digest...such things.

But we do. And she did. In a very gentle way. That still knocked the breath outta me.

Breath that I've been holding until today. Because even though I kept telling myself NOT to worry. That what is meant to be will be... Even though my Bible flips open from habit to Psalm 139. My heart has a mind of her own at times. And breathing has been troublesome.

But today came the good news! Nurse Ruth emailed to let me know that she's received authorization codes for Trevy's MRI...PET scan...AND the surgery!

The only thing pending is Dr. Neuro-surgeon's fee. Which if it should come to the out-of-pocket point is not unreasonable!

And so I'm here sucking wind like my life depends on it...

...able to breath again. To let optimism creep past anxiety again.

And reading Bennett's update today was an extra puff on the hope pipe!


Anonymous said...

YAH!!!!! YAH!!!!!!! that is so great, i can check that off the prayer list.
i am so happy you are breathing again! i was really worried.


JSmith5780 said...

What ar eyou puffing on over there??? ;)

JK, I am so glad you got this call. I could hear the stress in your voice last week. Relax and rejoice. I told you it would all come together!

blogzilly said...

Glad my post helped your hope pipe...here's another thing to take a hit off of. They are discharging us today. You're the first person (other than our parents) who knows. I haven't even updated the main blog yet.

baby trevor's mommy said...

Thanks Connie! xoxo

Jenn...I know. I have been SO stressed. Even though I really felt optimistic that it would go through...it just felt so limbo. And limbo gives me stress headaches. I'm actually still nursing one. ;)


Holli said...

I never knew that was an issue...

And so very glad it's not anymore!!!

Adesta said...

Glad to hear that all the major important stuff will be covered. What a HUGE relief.

baby trevor's mommy said...

Holli...I didn't want to be the girl who cried wolf...so I stayed mute on it. But it was a huge heavy burden. How devestating would that be...to learn that your kid is a candidate but "oh sorry you can't afford it"! It's appalling that healthcare is at that place. But I'm too battle worn and ditzy right now to really write a solid post on it. Someday... At least now I can sleep again.

Adesta...HUGE relief indeed!

Ken...so I had an internal to post or not to post your comment.


Anonymous said...

As if.

As if you had to explain how much no funding stressed you.

I'm not so sure I give the nurse extra credit for sharing the info verbally. She gets credit for gentleness, yes. But I am suspicious of the whole unwillingness to put the expectation in writing.

No matter now. Breathing is good. Keep it up!

Monica~ James~ Connor said...

Woohoo!! Medical bills make me want to blow chunks. i just did a happy dance in the driveway when i opened a letter from our insurance co. today that showed we have met our out of pocket max for the year (for Connor that is...James & i are too cheap to go to the DR for fear of more bills). Such a relief to know our MRI tommorow will be covered 100%!!! So, I'll do a little booty shake for your great news too!!

By the way, nurses are handed off the not so great new to pass on all the time b/c no one else wants to do it. So, I'm just glad she let you know the truth instead of hiding it from you & not wasting time to send it to you in the mail. (ok...stepping off my red biohazard sharps box). ;)

Liz said...

That is fabulous. Hopefully the news will get you out of your funk so you can start gearing up for the big day.

Insurance stuff makes me crazy. We actually got a denial to see Dr. C 5 days before our visit, but luckily, with our insurance there was a way around it. But it is a sign that our healthcare system is broken when we as parents have to make decisions about our children's health based primarily on the state of our finances.

So glad it worked out for y'all!

baby trevor's mommy said...

Barbara...the hubs read your comment and said, "I agree with Barbara!" Very emphatically. I thought you two consipiracy theorists are so cute.

Monica...we used to sign a homemade song to Bristel "do the booty shake shake...do the booty shake shake" She loved it. ;)

Liz...I couldn't agree more. No parent should have the feeling in their gut that their child could be saved...but the price tag is out of reach. It was an awful two weeks. I wish I were a stress starver instead of eater!


Abbe said...

such wonderful, wonderful, WONDERFUL news! glad to know all is now within reach!

~Mama Skates~ said...

oh praise God! hang in there girl! u're almost there


Colby said...

One less thing to take your energy....Wow...What a relief....Now you can focus on preparing for the big week and Trevor's progress!!! It won't be long now...Just think....

Prayers are still going up for evverything to go smoothly and for your miracle!!!