Katy received her gift of life 15 months ago. 15 precious months… that by
all most accounts via social media and this blog have been happy fabulous days filled with many firsts and many days to be thankful for. Of course you have read and prayed over the updates that haven’t been so great…and we have gotten through those bumps that we knew were apart of this new journey.
But, in an effort to protect you, and myself. Those prayer requests and updates that were not full of sunshine were very much sugar coated… I made it look like no big deal… just a little hiccup and I drowned those not so positive updates… with tons of pictures of our little girl rocking life with her new heart.
The reality is for the last 15 months our baby girl has been fighting for her life… harder than she ever did with her old heart. Katy’s cardiologist said… for the last 15 months Katy has been trying to die.
I disagree… Katy’s heart/body may have been trying to die… but Katy, Katy has been fighting to live.
The doctor’s words stung. They still sting. But she speaks the truth. Katy has had so many complications since her heart transplant. Complications we were told could happen, but usually don’t and according to the team they never see a child have this many complications of both rejection and infection, and so severe at that, and nobody knows why.
For the first time in all of this… and all of Kate’s life. I am afraid she may die.
She is not bouncing back in typical Katy fashion. Her echo today showed no change… well that’s not very comforting. There is still a gallop when you listen to her heart. Her heart rate is down… but no big surprise since we are giving her a med to do that for her… I would be surprised to hear if it wasn’t down, and her weight is back up. Usually I can take all that medical stuff and stop and look at Katy and as long as Katy looks well and is doing clinically well… I can pacify myself… well when I look at Katy I see a girl that is white as a ghost… has puffy face… a belly that is distended and low energy…not very comforting.
Mike and I are looking at Katy and giving each other the look… the look that tells the other she just isn’t right. All the while telling ourselves and each other that maybe she is tired she was up at 530 for clinic… she just got out of the hospital… that her heart was very sick and maybe she needs to relax. All the while wondering if we are making excuses.
Please continue to pray for Katy’s healing. Please pray that the team can pinpoint what is the problem and why Katy is not responding as expected to the meds and treatment. Please pray for peace for this mama who is scared out of her mind. Pray that Mike and I can find a balance and rely on our gut to continue to help guide us in caring for our precious girl.