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.
12 comments:
I have no words to respond to this, except to say that I am so sorry, and that my thoughts and prayers are with you.
I am one of those people who don't post very often, but know that I have been praying for Katy & all of you ever since you first posted about her heart problems while you were still pregnant with her. Praying for healing, praying for peace, praying for God's will in her life. I will continue to pray for all of you - for healing, for strength, for peace. God's blessings to you all,
I have no way of knowing the pain the heartache even the frustration at times, and I'm sure a feeling of helplessness you
and Mike have gone through. But I do know what kind of parents you are. You are all special and very lucky to have each other to love. May God Bless and keep you strong. May God Bless Katy and keep her close. There is one thing I can certainly do however and that is to pray which I will continue to do every morning and every night. The power of prayer is strong. Take care all of you
My prayers surround all of you. I can't begin to imagine your mental anguish over seeing your daughter so sick. Praying for peace, comfort and miracles.
Amiee...I have no words of comfort...I'm sorry. All I can say is that I am praying. I am praying so very hard for you, your daughter, your husband & your son. I can't imagine. I just can't. I'm so sorry sweetie. You will remain in my thoughts and prayers. God has a plan...it would just help if he would make it clear and heal your baby girl. All my love sweetie. xoxo
I am so sorry. My thoughts are with your family.
Praying for the peace of healing for Katy and your family.
....from the very first day you walked into the insurance office, shared Katy's story and gave me my pink Katy rocks bracelet all of you have been in my heart and prayers....please know that continues, candles are being lit and prayers lifted much love
Praying for sweet Katy and your family!
I've never commented here before. However, I HAD to comment.
I too am a heart mom. And while Liv was going through her surgeries, we kept up a blog. Despite the scary moments, we tried to keep the blog positive whenever possible. Deep down, my thought process was one day she may want to read it and not hear about the "bad days".
THAT SAID - you're documenting her journey, your journey. And it's important to let us know that we need to pray and that you are scared.
Being scared doesn't mean you're giving up. Keep fighting and we'll keep praying.
Sending love!!!
Your update was helpful so I know how to keep praying for your precious girl. But I guess my prayer is basically always the same, "Lord, have mercy. Christ, have mercy. Lord, have mercy."
Carolyn (in Las Vegas)
I am holding your entire family in my thoughts and prayers. I am hoping that Katy is healing and getting back to herself.
Sending hugs to you.
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