"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Saturday, August 8, 2015

Moving in a Blur

The days are moving in a blur.

We are desperately trying to cling to all the precious moments we can--to imprint them on our minds. The sound of Katya's giggle. The twinkle in her eye. The feel of her skin. The curls in her hair. We snuggle her and tell her a thousand times a day how much we love her. We hug her and kiss her, sometimes with tears raining down our cheeks.

September 9th is racing at us, all too fast. We cry out to God for his strength, his mercy. We brain storm every way we can think of to try to head off proactively some of the issues we had last time that led to Katya nearly dying twice post-op. We tell ourselves that this time will surely be different. We try to be brave. But we are scared. So scared for her. And yes, scared for ourselves too.

So we go back again and again to God. That is all we can do. Cry out to him. We know that while it's good to be pro-active, good to make wise care plans and good to advocate for Katya in every way we know how, that ultimately, all that happens is way too much out of our control. We can do our best, but we can't make sure that this surgery has a smooth or good process. We can't be sure that post-op recovery will be any less traumatic and stress free than last time. We can't be sure that we will even walk out of that hospital with our precious Katya with us.

So while we try to be positive, we also try to be realistic. We keep searching our hearts and going over and over our decision making process that led to this surgery and questioning every detail. Because we have to know that this is the right decision--made with as much care as possible--so that we can stand on that fact no matter what happens.

Last time, when Katya was suffering beyond what I can even express here for 14 hours with a combination of a clogged surgical drain tube, anaphylaxis, dehydration and out of control pain, I remember calling my Mom about 8 hours into it and sobbing my heart out. "Mom, if I had not known this surgery was absolutely necessary, I would absolutely hate myself right now!" I cried.

I know now that pretty much every thing she suffered during that 14 hour time span was completely preventable and her suffering was the fault of a nearly fatal combination of mistakes made by the residents caring for her over the weekend. That does not make it any easier for me to handle--it in fact, makes it worse.

And for that reason, among many others, I am afraid. We do not take this decision to put Katya through surgery again lightly. We know she lost ground during that 14 hour period that she has never regained in several key areas and that makes me sad. It makes me sad that she suffered unspeakably for 14 hours. It also makes me angry . . . and that makes me afraid too. I do not want to go into this surgery time flinging bricks unnecessarily at every one due to fear and anger from last time.

And so, again and again, I cry out to Jesus for his peace. His sustaining mercy and grace to me. For me to have the wisdom to know how to advocate powerfully for Katya but not to be a jerk who spreads fear and terror among the residents--who are, certainly,  a completely new and 'innocent' batch of residents.

And we pray for her Doctors, for the nurses who will be caring for her, and yes, for the residents, who admittedly are who we feel the most instinctively wary about after our really bad experiences last time. We pray, and we pray. About many things. Things we have shared here and things we have not.

Meanwhile, time races on. And September 9th is going to be here way too soon. Way too soon we are going to be told to kiss Katya and walk out of the OR, leaving her behind for the next 10 to 13 hours or so. Way, way too soon.

So we hug her and kiss her and sing to her and pray with her and love her and hold her and read to her and play with her and snuggle with her and do every thing we can to cement these memories into her heart and into ours. Because time is moving in a blur, and September 9th will be here way, way too soon.


Sandie Flannery said...

It must be hard. I will be praying along side you. What exactly will they be doing this time?

Hope Anne said...

Sandie, thank you for the prayers! They are so very appreciated! This blog post tells more about the surgery specifics: http://bringingkatyahome11.blogspot.com/2015/07/another-surgery.html

Laura Elizabeth said...

I will be praying for Katya and for your whole family. God bless you all.