Friday, November 2, 2012

Well here we are...

It's probably about time I sent out a message to the outside world.  Let me just tell you how indebted I feel to you all for your prayers, support, and encouragement.  We feel your prayers, I assure you.

Yesterday was an intense and eventful day.  Caleb was scheduled to have a heart cath yesterday morning, but when he got into the cath lab and started the anesthesia, he went into cardiac arrest.  Fortunately, after 3 minutes they were able to revive him but of course everyone realized his heart is very weak and sick, more so than we knew.  We are so thankful that he didn't go into cardiac arrest at home, or while we were out trick-or-treating... thank goodness it happened here, and now.  

Over the course of the day, it became apparent to everyone that Caleb's heart was no longer even strong enough to consider more surgeries or repairs.  The only real option for him is to have a new heart altogether.  St Vincent's does not do heart transplants, so we've been moved to Riley Children's Hospital.  Right now, Caleb simply has to recover from what happened yesterday; they also need to make sure no damage was done to his other systems.  So far it looks like no permanent damage has been done but they'll be doing some tests to be sure of that.  Caleb is very sick and weak but he is stable for now.  The immediate goals for him are to be able to take out his breathing tube and see if he can breathe on his own.  If that is successful, the next step is to stop his sedation and allow him to wake up.  I am dreading that step.  He has started to wake up a few times on his own and it's awful to see how scared and upset he gets, even in just a few short moments. I know it's a necessary step in his recovery, though, and we'll focus on that.

The process of getting a heart transplant is a huge ordeal.  We met today with the transplant team for the first time and we were encouraged because we realize it's going to give Caleb another chance at life.  However, it's a long process and we have to walk one step at a time.  Caleb isn't even on the list yet but the process has begun and at the start of next week, we'll be moving forward.  For now, the doctors are focused on letting him rest and recover for the weekend and working on the initial paperwork to get him on the transplant list.  We will be moving in to the Ronald McDonald House here in the next few days and we will get to stay there for the duration of Caleb's time here.  

This is a crazy time, and we are mostly just trying to keep going one step at a time.  We are so thankful he is still alive and that right now it looks like there is hope that he could receive a transplant down the road.  I know this update is succinct, but I at least wanted to give some basic details.  We have moments of despair and moments of total peace and I think that's normal.  The ups and downs are intense but we're really focusing on one day, maybe even one hour, at a time.  

The support and love we feel from everyone is so amazing... it's keeping us going.  Even in the worst moments, God has helped us to feel His presence.  We are focusing on the things we have to be thankful for.  

Things to pray for today:
1- that Caleb would be able to come off the breathing tube successfully
2- that Caleb would stay stable
3- that God would give us peace of mind to handle all the information we're receiving right now

Much love to you all from our family.  We'll be more regular with updates soon, once we get settled in here.

21 comments:

  1. Thanks for taking time to share with us and for giving us specific ways to pray. We love you guys.

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  2. I came upon this blog from someone elses and have been reading awhile. Your precious little Caleb is the same age as our little one. Your sweet strong family are definitely in our prayers. I know you don't know us but if you need help with anything we are in town and more than willing to offer it. God Bless.

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  3. Praying for God to continue to give you both the strength you need and keep caleb and jonah in his care to help them both to get through this. We are keeping you in our thoughts and prayers constantly!

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  4. Katie and family....just wanted you to know that we are all prayimg for all of you. God is able to give you the peace and strength you will need to get through this! Love Rocky, Deb, and Reid

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  5. On my mind & in my prayers. Thanks for the update.

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  6. You and your beautiful family are in our prayers....much peace and love....the Metrokas

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  7. My family is praying for your family...thanks for giving us direction on how to pray...May God give you all the strength and peace..and may God give Caleb a new heart quickly..Amen...God bless the richardson's

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  8. I have been keeping you in my thoughts and prayers. Praying not only for healing, but for the peace and understanding that only God can provide. thank you for sharing the information with us. The Wrights

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  9. Daniel & Katie, our family is praying for you and your sweet precious family. Thank you for taking time to update on lil Caleb's condition and especially for including specific prayer needs. God will keep you in His loving arms. Love in Christ, the Schuyler's

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  10. I have learned about your sweet Caleb through Gracie Conyers's facebook page. I met Gracie at Mahoning Valley Christian Service camp when I served as a dorm mom and teacher the week that Gracie attended as a camper.
    Our family is lifting Caleb and your family up in prayer. We do understand the nightmare that you are living right now. Our daughter, Sarah, received a life-saving heart transplant when she was eight weeks old. She is now a miraculous twelve years of age. We faced Sarah's heart failure four years after losing our son, Michael, to an undiagnosed cardiomyopathy. Knowing firsthand the pain of losing a child, we didn't pray that another child would die so that our Sarah could live. Rather, we prayed that IF a child died, that the parents, during their darkest hour of grief, would choose to donate their child's organs.
    Likewise, we are praying that God will sustain Caleb's life, and that IF another child dies, that the parents would choose to donate life to Caleb.
    We don't know what tomorrow holds, but we know WHO hold tomorrow.
    When everything seems out of control, God is STILL in control.
    Nothing touches our lives which has not first been sifted through the fingers of God.
    I pray that God will reveal himself to your family in amazing ways during this very difficult time.
    In His Grip,
    Vicki Webster

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  11. May God bless you and provide you and your family some peace of mind and courage, and feel a comfort in knowing that The Lord is walking alongside you through every step of this journey. Many Prayers...

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  12. Praying for Caleb and your family!

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  13. So glad to hear the encouraging news. we'll continue to pray for all of you, for wisdom for the Drs, and that God would be glorified through your family and His plan for little Caleb. Linda & Rob

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  14. Katie & Dan~"My soul find rest in God alone; my salvation comes from Him. He alone is my Rock and my salvation; He is my fortress, I will never be shaken." Psalm 62:1-2 I am so encouraged by the outpouring of love and prayer~God is moving. Love you all so much! Pam Snell

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  15. Dear Katie and Daniel, My heart is holding you close as I pray for little Caleb. May God give you the strength to go the journey waiting for a little heart for Caleb. May God give you peace when things get hectic, may He give you comfort when you are afraid to sleep, may He give you courage to trust in Him for all your needs. We love you and will be in prayer for you and especially little Caleb. Love and prayers....Pam Cooper

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  16. Hi Daniel and Katie, today as I was thinking of Caleb and lifting him up to Jesus, the Lord was reminding me of the story in Mark 5, Jairus daughter was very ill, and Jesus was on his way to visit the daughter and then was stopped by the women with the issue of blood, why Jesus was talking with her a person came and said don't bother the master, you daughter is dead. What Jesus said to Jairus next is what is being highlighted to me for you, BE NOT AFRAID ONLY BELIEVE.
    I am sure there are lots of circumstances you are being told right now, I just want to stress to you not to look at those things, keep your eye on Jesus, do not let any doubt or disbelief into your hearts. Remember what Jesus did when he arrived at Jairus house, he kicked everyone with doubt and disbelief out. I pray for the Holy Spirits presence to be so strong with you now, for courage, strength and power to come and rest on you both.

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  17. I am the Aunt of Sally Richardson Robins. I wanted to let you know that our family will be praying for Caleb and the rest of your family. God's peace to you and healing to Caleb

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  18. Sending lots of prayers from New Castle! We are thinking of you all & praying for you, Caleb, & the rest of your family! We are sending lots of love n prayers your way!

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