Friday, August 19, 2016

Insanity and the Flood

You know what the definition of insanity is, right?
Well ... here you go ...

Insanity - Doing the same thing over and over again, expecting different results.

At least that's the only definition I know and it's exactly the definition I gave the doctors yesterday in rounds. And, that's where I feel like we are stuck ... in this cycle of insanity.

La Petite Belle bleeds.
They get the bleeding under control with meds and by pumping her full of blood.
She seems to be improving, lasting a few days to a couple of weeks.
Then, the cycle starts over again with another bleed.
Repeat. Repeat. Repeat.

Do you see that? Insanity.

If the cycle itself isn't enough, we have to deal with teams of doctors disagreeing on what's causing the bleeding ... Is it the GVHD (which the last biopsies have shown to be gone or very mild) OR is it the results of high-dose steroids? Is it one central spot that continues to bleed OR is it general oozing in areas OR is there another area that's bleeding? 

Those are the questions to which we have no answers.

Another meeting is being scheduled between medical teams ... GI, BMT, PCU (which is the floor we are on now that is the step up from ICU, with the same ICU doctors that are very familiar with La Petite Belle), and a new team, Transfusion Medicine. This last team has followed her labs closely for a while and have started her on a new IV medication that is supposed to control bleeding.

However, La Petite Belle still had a little more bleeding just yesterday after doing well for days. When it will stop, we don't know. What will cause it to stop besides giving her blood products, we don't know. There is so much we don't know, and apparently the doctors don't either. Just as we are frustrated and growing very weary in this process, they are too.

As our lives continue to be turned upside down, almost unrecognizable ... actually, not "almost" ... TOTALLY unrecognizable, we watched as so many of our friends back home faced major flooding last week and the devastation that it caused.

Would it make any sense to you if I said that I wished I could've been in Lafayette as it flooded?
No, it doesn't. Let me explain.

The flooding made me miss home.
The flooding made me miss the people in Lafayette ... my people.
The flooding made me miss my family and friends.
And, I realize Lafayette will always be home to us.

About 16 years ago, we had the same revelation when Beau and I decided to move back to Lafayette after living in Tulsa for six years. Actually, we realized three years prior to that when K Belle was born that we wanted our children to live close to and know our families, our friends, the church we met at, and to be a part of such a unique community. I'm so glad we made that decision.

As I sit in this hospital room in Houston, after a couple of weeks of traumatic events and moving into a new apartment, my heart yearns to be home again. Our girl wants to be home more than anything. When I was unpacking our boxes earlier this week, I had so many emotions about living in this city. While we do love Houston and live here now, it doesn't feel like home.

When La Petite Belle gets down, the only thing she says is, "I want to go home." And, when she says, "home," she means our life in Lafayette, which doesn't exist anymore.

We all miss it so much. My heart feels like it's still splitting in two, despite the fact that we've lived in Houston this year more than we've lived in Lafayette.

All of my hometown friends ... I hope you know what you have there. Appreciate it. Lafayette is a special place with the greatest people on the planet. Go hug a Cajun today ... dem's good people. If only I could transplant all my Lafayette peeps here in Houston, life would be so much more doable. So obviously, it's not the place, it's the people who make Lafayette what it is. #ProjectBringLafayetteToHouston

As for now, we're Houstonians ... we continue to have NO idea when this ordeal will be over nor what life will look like afterward. So, we're here ... holding our baby's hand, praying over her, crying, loving her, hoping, and trusting in a great God.

I love this song because it's exactly where I am right now ... telling my heart to beat again, telling my heart to trust, telling my heart to hope in an unchangeable God and loving Father.
Thank you for continuing to pray, believe, and stand with us for our girl's complete healing.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here:  All funds go to cover medical bills and expenses.


Mama Rose said...

i don't know you personally, but am a faithful prayer warrior for your precious girl in this battle. I am amazed at your testimony of faith and thank you for sharing your journey, so I can pray specifically for your needs. You are loved!

Tirzah said...

You are so right about Lafayette. We miss it terribly. Praying for y'all.