Thursday, January 3, 2013

Struggling

This week has been such a challenge.  A lot of crying, all around.  A lot of hand-wringing and nausea and inability to sleep.  This past weekend, Daniel and I had a getaway to our own house, including a date night, and my mom stayed with Caleb and it was wonderful (as wonderful as those nights can be when your son is in the hospital waiting for a heart).  Then on Monday morning the hospital called and I thought it must be The Call, but it wasn't that we'd gotten a heart... it was that Caleb had torn off the dressing of his picc line and would have to get a new picc line placed.  And they were not comfortable with the idea of putting Caleb to sleep, since the last time he was under anesthesia, his heart stopped... so they were going to have to do the procedure while he was awake.  Oh, and by the way, he has lost weight again and we're going to have to take some kind of action about that today after the procedure.  So we're throwing on clothes and rushing back to the hospital and I walk in the door exactly 2 minutes before they take Caleb back.  And it was AWFUL... they gave him a sedative to help calm him but he screamed and fought it for the entire hour and a half while he had to be tied down to the table.  It was  traumatic for him, to say the least.  They ended up giving him a second dose of the sedative and that turned him into a crazy person, yelling, crying, throwing things.  It was like my sweet baby went in to the room and the Incredible Hulk came out.  Later that day, the doctor came in and said that the time had come when we couldn't continue to let Caleb eat like a bird.  We decided to go with him getting nutrition in his IV at night while he sleeps.  After the day we'd had, I was like "whatever, just do whatever you think you need to".

The next day, yesterday, Caleb seemed to be ok mood-wise, but woke up with a swollen face and belly.  And throughout the day, we realized his heart rate and breathing rate were high.  He seemed exhausted, which made sense after the day he'd had before.  Our nurse was really concerned about him and the docs were keeping a close eye, hoping that his body was just adjusting from the new IV fluids.  All day, we were nervous wrecks... what's wrong with him?  Is he ok?  Is this just how his body reacts to this new IV of nutrition?  We just hoped that by the next morning he would be back to "normal".

This morning I sat down with our nurse and she explained that the doctors are still hoping that Caleb's body is just adjusting to all the additional fluid but they don't know if that's what's going on or not.  It's hard to know when I should be worried... because the doctors can't say, "oh, it's nothing, he's fine".  Because he's not fine, he's a really sick kid.  His heart won't get better, it'll keep getting worse and even though his decline is gradual, it still scares the crap out of me.  Because I know kids die every year waiting for the heart that never comes.  I'm so tired of watching him get sicker and sicker and knowing that nothing is going to change that unless he gets a new heart.  He's got to get a heart.  

Today I want to ask you all to pray with extra faith and belief.  We're praying, praying, praying that God would move in the hearts and minds of any family that is faced with the choice of donating their own child's heart, that they would say yes.  Pray for Caleb today!  Pray that God would provide for him.  Pray that Daniel and I would keep going with strength and perseverance.  Pray!

46 comments:

  1. WE will continue to pray FOR YOU AND YOUR FAMILY God bless you ALL

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  2. A host of prayer warriors are praying at Indiana Wesleyan University!!

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  3. Our "Daughters of the King" women at St. James Episcopal Church are praying every day for Caleb and his family. Also the complete church family. God be with you.

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  4. I believe that the Lord can repair his heart and make him whole!

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  5. praying praying praying

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  6. Constantly praying for all of you....a heart for Caleb and strength for all of you.

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  7. Katie-

    I am one of Julie's students that brought pizza that one night. We are praying for you constantly and ask Julie about Caleb's status. Know that we are here for you and praying for Caleb and your family. God works miracles for those who rely on him for healing and strength. We are here for you!

    Molly

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  8. Praying for Caleb and family.God bless...

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  9. In my heart....Mark Foshager

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  10. Sending prayers!

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  11. Your all in my thoughts and prayers. Praying for a heart now. I'm laying Caleb at the feet of Jesus and asking for his mercies and favor to be on him till his heart comes.

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  12. Praying forCaleb to get a new heart & for your family. - Beverly Matthews

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  13. Storming the heavens! I am believing a new heart will be there soon. I know this has got to be a really hard thing to be going through and I thought of you and your family with the daily reading from Sarah Young's Daily Devotional Jesus Calling. Refresh yourself in the Peace of My Presence. This Peace can be your portion at all times and in all circumstances. Learn to hide in the secret of My Presence, even as you carry out your duties in the world. I am both with you and within you. I go before you to open up the way, and I also walk alongside you. There could never be another companion as devoted as I am.

    Because I am your constant Companion, there should be a lightness to your step that is observable to others. Do not be weighed down with problems and unresolved issues, for I am your burden-bearer. In the world you have trials and distress, but don't let them get you down. I have conquered the world and deprived it of power to harm you. In Me you may have confident Peace.

    You both have shown such strength and faith through this trial and have been an example of God's love. I pray God's peace will cover you and give you strength to get through each moment!

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  14. Praying specifically for the swelling to go down and Caleb to get the perfect heart. Praying for the Lord to give you the extra strength and comfort you need to get through this.

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  15. praying for all of you - lifting Caleb up and praying he feels the presence of angels around him comforting him

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  16. I'm a friend of Amanda Huss. She also had prayer warriors all over. She got her heart and is doing well. We need to continue asking more to be prayer warriors for Caleb and your family. It's hard, but everything in God's timing. We will continue to pray for strength for all of you and a heart for Caleb!

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  17. Dear Kinnard Family I lift you all up in prayer and command God to work in favor of all your needs and ask that He continues to send an army of angels to lift up, encourage and comfort each one of you because God truly loves you, Daniel, Katie, and you sweet, precious boys, Jonah and Caleb. In Jesus name I pray.

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  18. Mark and I are praying for your precious little boy, and for your whole family. May Jesus hold you all close as you walk this path day by day.

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  19. Praying for Caleb and your family, Praying for everyone with a sick child and that a heart will be for Caleb soon.

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  20. Praying for your sweet baby boy! Praying for your whole family....... I pray for a new heart and for new strength.

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  21. Thinking of you and hoping for a better day for your family.

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  22. continuing to lift up Caleb and family in prayer every day

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  23. I wear Caleb's arm band almost every day. One day I moved my arm and noticed how close it was to my heart. It was a reminder to me of how close Caleb and your family are to the hearts of all of us who are praying for Caleb. More importantly, though, it reminded me of how close he is to God's heart--much, much closer than he is to ours. We love you, but God loves you so much more. We will continue to hold you up to Him in faith believing.

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  24. Praying he gets a new heart in time.

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  25. We are praying for all the Kinnaird family, and wear our bracelets and speak of Caleb daily. Just today, someone at the diner asked about Caleb, and I told them, a heart is close by...I just feel it. You have 2 beautiful boys, and we love you all. Keep the faith, the Lord is coming with the heart for everyone's boy.

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  26. Dear Katie and Daniel,

    May the God of all comfort be with you folks today. You have been on my mind and in my prayers a great deal. Now, having found the blog, I can pray with a bit more intelligence - if that is possible for me!

    I believe that fellow "ITers", Andres and Adriana Espinoza are in the same unit as you folks with their daughter, Sofia. As we are reminded to pray for them, we will also be praying for Caleb.

    Serving Him together, Woody

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  27. Katie & Daniel,

    I know we haven't officially met yet, my wife Kristin & I are new to Iteams, I've been following your posts and just wanted to let you know that we are praying fervently for you and young Caleb. My heart just breaks for your family. On my mind, in my heart, at His throne!!

    Ben & Kristin Choitz

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  28. Dear sweet Katie,

    As a fellow mama this breaks my heart! We are praying that Caleb gets his heart SOON!

    Love you!
    Kylee

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  29. I continue praying for Caleb and all of you,God be with you always.

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  30. We don't know you, but I know some of your family from when I went to Cadiz Christian Church....we have two kids and are deeply praying for you and your family. Beth Patrick

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  31. Katie and Daniel--Sue and I have been praying fervently for you and little Caleb. We feel so bad for Caleb that he has to go through this awful trauma. Our hearts also go out to you as parents as you seek to hold on in the raging storm. We pray for the perfect heart for Caleb and for His perfect peace over your household.

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  32. Praying that today is the day! A new, perfect heart for Caleb! And for continued Faith and strength in Him for your wonderful family.

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  33. We will pray for your family. God is the great provider. May His Peace fill your hearts.

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  34. Prayers continue for Caleb...it is very difficult to watch the devices connected to your child, knowing that this is something you cannot fix with a kiss to the forehead or the boo boo on his knee....... Would love to visit, not sure which Riley is he at? The older building downtown or on North Meridian?

    Terry Roberts (the late Brady Reese's mom)

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  35. Saying so many prayers for your family!

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  36. We are praying for your continued strength and stamina during this difficult time. We will continue to pray for Caleb's doctors to have wisdom and that he is able to receive a heart soon. Know that you are loved by God and by those of us who are praying for you and your family.

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  37. Lord Jesus, You are our King. When we are weak, You are still strong--and You make us strong and You show Your strength through us. Please continue to do so for Daniel, Katie, and Caleb...as well as for all involved. We know You know exactly how much we can each handle, yet, Jesus, we don't understand why You allow us to endure so much sometimes. Okay, so, yes, we know that You know we don't understand. And we also know that You want to show Your power, peace, want us to fully depend on and trust in You, etc. We don't like the pain part--the physical pain, emotional pain, spiritual pain, etc. Yeah, we know You know that, too. Lord, we want You to do something NOW. And we know You can give Caleb a new heart NOW. And, yet, Jesus, unfortunately we know that unless You miraculously give Caleb a new heart, his new heart will come to him because it was someone else's. Someone else would have to die. Crap, Lord. We don't want that, either. Jesus, although I only know Caleb's Uncle Thomas, this is hard for me to say. Jesus, I know Caleb and his family know You. If the heart that could be Caleb's will cause someone to know You--someone not involved with Caleb's situation--then make sure that heart goes to them. I know Daniel and Katie don't want to think this, yet I know they love You. Jesus, I'm waiting for the report that Caleb is perfectly fine--that You totally healed Him. That's what I'm waiting for. Because, Jesus, I know You. And I know what You have done, what You do, and what you can do. Above all, Your will be done. Jesus...Your will...

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  38. Don't know you guys personally, just through mutual friends and wanted to let you guys know I'm definately praying. I hope with everything in me that you guys get that heart.

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  39. I'm writing your name on my prayer card today at Mt. Pleasant Baptist Church in Decatur township...I know you have ties with our community--that's how I came to hear and know of your trials. I'll be singing "Our God" on stage today and I will pray with passion at the words "....and if our God is for us, then who could ever stop us, and if our God is with us, then what could stand against". For your boy and family, God IS for you, He WILL provide. In fervent prayer, Jenni Horning

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  40. Im a friend of Amy Lings. She told us about your little Caleb as we also have a little Caleb who had an emergency heart op when he was four months old. One of the things that encouraged us when he was in the op was a friend said that God is holding his heart. And i hope that can encourage you both too. You are both in Gods heart and so is Caleb. xxxx

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  41. Praying for Caleb and your family.

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  42. I am praying always for you all. My heart is breaking for you.

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  43. Praying for heart for Caleb and strength for you two. Ted and Sandy

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  44. Praying for heart for Caleb and strength for you two. Ted and Sandy

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  45. My son Carter was listed as a 1a and got his heart in 6 days!:) he wasn't even a month old yet! God can and will do that same miracle for your baby boy!:) stay strong your answered prayers are on there way!

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