Update from Mom, Chrystal, from days leading up to transplant and some post op.

Trying to find the time to update everyone who is supporting and praying for our sweet girl, Cyla.  Thank you for the outpouring of love!

Since the last post I made on Facebook, Cyla did receive a donor liver and underwent emergency transplant surgery. The days up to that point were a complete and utter nightmare.

Things progressed so fast it felt as though my life was moving in fast forward and I couldn’t find any way possible to get it to pause or stop. Watching my baby slip from a healthy, funny, active, beautiful young girl to bed ridden with tubes coming from every where in her body, fighting to stay alive.

Sunday the 8th was the day things turned into an absolute disaster. Watching from the hallway as a team of 20 people fight to stabilize your child and keep her here was something I will never forget or be able to unsee. I felt my soul leave me, an emptiness and flood of anxiety and worry overcome me like never before.

Praying to God to please not take her.  The doctors stabilized her enough to pull us aside telling us we didn’t have much time and she was placed on the top of the donor list. I was in process of being a living donor and begged them to finish my tests so I could go immediately into surgery to give her my liver. 

They were trying to order my tests and we were still waiting in the hopes of a potential deceased donor. It was only a few hours later that her team found a donor. They were harvesting the donor liver at 12am Tuesday and told us we should receive the call that the liver was viable by 1-2am.  

Waiting for that call was agony as we watched Cyla cling to support, hoping we had enough time. 

The thing about liver failure is the kidneys go down too. This causes the body to not be able to process and get rid of toxins like Ammonia and Lactate which then build up and can cause brain damage. I got the call around 3:30am that it was a good liver and she would be going into surgery at 4am Tuesday. 

Now the worry of “keep her well through surgery” and “let her be strong enough to make it out”.  It’s a 6-10 hour long surgery. We waited, cried a lot of tears, prayed so incredibly hard and at 12:15pm the surgeon came to tell us the surgery was a success.

The constant up and down of emotions during this process is exhausting. Although the surgery was successful we were still unsure if any brain damage occurred or if she would be brain dead. We had to just wait for her to wake up.

Slowly we would see signs of her stirring. Maybe her eyes would open for a bit, she would fight the breathing tube. I would play music for her specifically the song “Jesus saves” which she always said was her song to me, that it reminded her of me and her. She wanted to get mom and daughter tattoos that said Jesus saves. 

Finally one day while I was singing in her ear our song, she turned her head to me.  Once she finally started to open her eyes more and seemed like she was actually awake it was breathing tube extubation time.

Still not knowing the neurological status we anxiously waited.  They took the tube out and she turned her head to me and whispers “Hi Mom, I love you so much, you’re so pretty” she then asked for a slushie. 

I cried and cried and thanked God for placing his hands on my sweet girl and watching over her.

Since that moment it’s been up and down, fevers presenting themselves which lead to blood cultures, lab levels rising bringing concern of issues. Constant monitoring and hoping the body doesn’t reject her new liver. Trying to have conversations with her to let her understand what has happened because she didn’t recall much. Telling her she has this huge change to her body and now hoping her little self is able to process and manage all these changes that will come to her life.

She is stable now but still in the ICU, we are working with OT and PT as she still has no ability to use her arms. She can move her legs some but is extremely weak. She is talking but has a weak voice. She is fighting.  Please continue prayers her recovery is a very long road.  I’ll keep updates coming as Cyla progresses. We appreciate the show of love for Cyla & our family <3