Friday, March 8, 2013

A growing urgency

Sometimes it feels almost silly to ask people to pray for us, as if you all haven't done that for months... but today I am asking you to pray again.  We have had a pretty good week this week, but there are a couple concerns on our hearts.  

It's not that I haven't been honest, but I certainly haven't really shared how Caleb has been doing lately.  The truth is, he's not doing that great.  When we thought he was getting a new heart last week, we kept saying how it happened just in the nick of time.  But then it didn't happen.  Caleb has good days regularly, but he also has bad days regularly, and when you look at his health over the course of the last month or two, it's very easy to see how he has consistently trended down.  He works really hard to breathe.  His heart rate gets high too often, sometimes even when he's just laying down.  He rarely gets out on the floor to walk around anymore and spends a lot of his time in his bed.  He doesn't eat or drink anything other than water and he vomits daily; his gut isn't functioning well and those medicines hit his empty stomach and he pukes.  The last few days, the doctors have said that his liver is starting to show signs of dysfunction, which can be expected because of how long he has had IV nutrition.  They are checking his kidney function today. When a person has heart failure, eventually all the major organs start to shut down.  The doctors have told us that there are still some adjustments to make and some things we can try, so we're not at the end of our options.  But if he continues to do poorly, the next step they will take is to indefinitely sedate him and put him back on a ventilator so that his heart doesn't have to work so hard.  When you're sleeping, your heart has less work to do.  The idea of Caleb lying in a bed unconscious for the rest of this wait is a pretty hard pill to swallow.  Again, we're not there yet, but that step is in sight.

This week Caleb had 3 good days in a row, and then a couple less-great days.  On top of all this, the social worker came in with some potentially bad news... Medicaid is re-evaluating Caleb for his coverage.  They were not supposed to do this for 12 months, but because it just so happened to be time to re-evaluate Jonah (who is on Hoosier Healthwise), they decided to re-evaluate Caleb as well.  From what we've learned, Medicaid will do everything they can to NOT cover you.  If they drop Caleb's coverage, he will have to go "inactive" on the transplant list until he gets coverage again.  There is a conference call on Monday and our social workers are doing everything they can but we won't know the outcome until the middle of next week.  Seeing that Caleb is getting sicker, the idea of an insurance issue keeping him off the transplant list for any period of time freaks me out.  

Would you please pray with us that Caleb would get a heart this weekend?  Before his body gets weaker and before insurance could drop him?  Would you pray that God would move in the hearts of any parents this weekend who are faced with the option of donating their children's organs, that they would have the grace to say yes?  Would you pray that we would not give in to fear and worry but enjoy our weekend with our boys while we wait for Monday to find out test results and insurance decisions?  If Caleb could just get a heart this weekend, none of it would matter.... 

Caleb is such a trooper, and even though I know he feels badly, he is still a sweet, happy little boy.  But he is also a boy that desperately needs a miracle.  Please pray with us, ask your friends and church to pray, that God would provide a new heart for Caleb THIS WEEKEND.  Knowing we have an army of Caleb supporters will keep our spirits up!  Thank you for your love and prayers!

60 comments:

  1. Please know that Tonya & I are continuing to keep you all in our daily prayers. We are especially praying for little Caleb. We will be praying extra hard about this re-evaluation next week that everything will work out in Caleb's favor. Be blessed!

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  2. Praying and lifting you all up~ALL THINGS guys! Love you, Miss Pam

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  3. Praying for your family here at Dishman Farms! We will pray extra hard this entire weekend.

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  4. Praying so hard right now, I lost my only daughter at a young age and I pray you never have to go thru this loss of a child...love that little boy.....praying.....

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  5. I will be praying for you, Katie, and asking my classes to as well. Know that you are your family are surrounded by love.

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  6. Sending up prayers for little Caleb. I think it was Oral Roberts who always said, "Expect a miracle". Yes, expect a miracle!! Jesus loves the little children! God bless all of you.

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  7. Katie, I saw this on Aunt Connie's wall....your in my thoughts and I will send all the good juju we have around here. Much Love, Morgan McBride, Jason, Preston, Alex, Tinkerbell, Max, & Panda

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  8. Will be praying for Caleb and also for the rest of the family. Please God give this little boy a new heart.

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  9. Praying everyday in the Spirit, may God provide a new Heart for Caleb, NOW. Love you all.

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  10. "I am making a way in the desert and streams in the wasteland, to give drink to my people, my chosen, the people I formed for myself that they may proclain my praise."
    Isaiah 43
    We continue to pray,
    Kathy & John

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  11. I've been following your story through Facebook. Anytime someone asks for a prayer request Caleb's heart and your family is always my first response. I wear my shirt frequently so people will ask and I can tell them to pray. My spring break team is praying for him, my choir is praying for him, and I'll be sure my wing is praying for him. Taylor University loves Caleb and all of you!

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  12. God is in control, and His Will will be done. My prayer is that God provide a healthy new heart for Caleb this weekend, so that he is convered by insurance and so that he may breathe and feel like a normal little 2 year old! (No damage to his other organs, please.) Katie, I want to see you write a blog insisting that he is getting into everything and feeling so good!!! Please, God, we pray.....

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  13. My family and I are praying for you in Columbus Ohio! We're praying for strength, healing, and comfort for all of you, and most especially for a heart for Caleb.

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  14. Praying that God will provide. Praying that He will blanket Caleb, you and your entire family in his love and that you can feel Him moving in all things. Praying for his doctors, for the insurance, for the parents of those beautiful little donors.

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  15. The Andersons are all praying for Caleb and the family!! We pray for God's blessings and complete favor over this situation!!! We lift you all up with our prayers for peace and comfort, knowing God is in control and going to provide!!!!! MAY HIS PEACE SURROUND YOU ALL!! Laura & family

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  16. I know you don't know us but know that The McCain family is thinking of you and praying for you!

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  17. Jeana and Austin Davis are praying for you!!!!

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  18. We are always praying for Caleb and your family, and I have also called and added his name to the prayer roll.God WILL provide!

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  19. Just wanted to let you know that the Raines's are standing with you, as part of the Caleb army...knocking and seeking God's divine intervention. Love you guys.

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  20. Asking our Father to overshadow your family with his presence, strength and comforting peace as you walk through these circumstances one day at a time. My heart breaks for your family and I pray for all that you have requested and more as you await the day that you hear a heart has been found and that the insurance issues are a solved issue. Be blessed little Caleb and rest in the hand of God as you await the heart that will give you life anew!
    In heartfelt sincerity,
    Lauren
    Ohio

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  21. Prayers, prayers and more prayers to Caleb!!!!!

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  22. Praying all goes well this weekend!

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  23. We pray even as we are writing this note. We know that you are Godly people and have gone through so much in your young lives. We also know that God wants only the best for his children and while our hearts ache for you I am sure you are praying in harmony with all of us, your friends, that Gods will will in the end by your goal. Remember this in the end Caleb will be the winner. Uncle Lyle.

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  24. Agreeing with you in prayer on this matter. God bless you and your family, especially Caleb. Kevin S.

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  25. It is hard to pray for a donor heart knowing that it will have to come from someone else who will not be needing theirs any longer. However this is what will have to happen for this miracle to take place. I pray that the family that is in this situation will be able to see clearly enough during their time of tragedy to be able to give the gift of life to Caleb. May God's will be done.

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  26. One of my friends on Facebook posted your story and I am praying for you!

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  27. I don't know you or your family, but the Good family will continue to pray for Caleb and all of you.

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  28. In Jesus' name, I speak to Caleb's heart and say be healed! God has good plans! Good plans for Caleb and your entire family! I see a crown of gold surrounding your family. In the front of the crown are five gems. The centre one is elevated and larger than the rest, and there are two gems to either side of it. The gem on the farthest right (a milky white colour.. I think it's an opal) is cracked. As I watch, I see The Angel of the Lord step behind you, and wrap his wings around your family, bowing his head in as if huddle closer to you. I see him weeping over Caleb as you hold him up, his tears falling on him. I then saw another angel approach the cracked gemstone on the crown and replace it with a new stone, strong and whole.
    Then I saw a golden hammer hammering over your family as a blacksmith would hammer and fold steel into a sword.
    I believe that the crown represents your family. The larger gem represents God, who is the head, the other stones are your hearts, and the cracked one is Caleb's. As The Angel of the Lord weeps over Caleb, I believe his heart is being supernaturally replaced with a newer, stronger heart. And I believe that the hammer hammering your family into a sword represents how God will use this difficult time for good in your lives, making the Sword of the Spirit tangibly real to you!
    "...The Lord is near! Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus!" - Phillipians 4
    I will continue to pray for you all, as a brother in Christ, who has sanctified us all. Though I have never met you, I can honestly say that I love you! May our Father, who sits in heaven, bless you! May he keep you! And may he cause his face to shine on you, and be gracious to you in this time.

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  29. Praying for all you've requested and more. We haven't stopped. Know this! We will not stop. Love you!

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  30. <3 Heart goes out to your family <3 Many prayers from one mother for another. Love to you and yours.

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  31. Praying! Our God is able to accomplish what concerns us today. Praying for all of you

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  32. Extra thoughts and prayers this weekend for for all of you but especially Caleb.

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  33. Praying for you all to stay strong as God works his wonders for little Caleb!

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  34. Praying that the healing that is Caleb's by the stripes that were laid on Jesus' back will be manifested this weekend, either by divine healing or a donor heart. Know that God is your strong tower, your shelter in the midst of the storm. He covers you and your family with His feathers. May He bless you with the assurance that He loves you and will not fail you.

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  35. Prayers are going up for Caleb in Texas! Remembering you, Katie, and Dan and Jonah!
    Hugs to all of you! Aunt Jan

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  36. You have my heartfelt prayers for Caleb and for his transplant and recovery and the strength for you all to get through this. I also pray that in the evaluation for health insurance, he will be covered. All of this I pray in the name of Jesus!

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  37. God never does anything wrong. I will pray for Caleb.God will see Caleb through this. Love in Jesus.

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  38. I know you don't know me, but I will be praying and praying for this little guy to get his heart this weekend. I know someone that works with his grandfather. Thinking and praying for your family!

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  39. I will pray for our family. We lost or 18 year old daughter in a car accident 2 years ago. We wish we had been able to donate her organs but we didn't have that option. I pray that another parent makes the brave decision to donate so your son may live. God bless you!

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  40. Payers from middletown indiana

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  41. Dear God, I beseech thee in the name of the Lord Jesus Christ to watch over Caleb and see that he receives a new heart. At the same time, please bring peace to his family and surround them with your infinite love and goodness.

    A father of two sons

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  42. Prayer from Alabama!

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  43. Grace to your family, prayers for healing and may God's divine power be at work in Caleb's life.

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  44. Praying extra hard for your family and believing for a heart this weekend and praying that the insurance will not drop Caleb and that your family will have peace and strength to endure this test...love the Richardsons

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  45. Prayers to you, your family, and Caleb. I am also praying for the family of a beautiful child that will have to give that gift of great love through their grief. We ofcourse know that none of us want to see any child perish but that is not what we are praying for. We pray that when a beautiful child gets to join our Father that the parents may find organ donation to be a comfort and a source of healing knowing that their child died not without purpose, but can still change the world for years to come by providing new life to possibly several children in need of new organs. The children healed can pay it forward to the world with one small act at a time. Dear Heavenly Father, please wrap this family in your love, mercy, and grace. Please give them no more than they can bear, and place in all of our hearts the desire to do good and pay our blessings forward. May your will be done Lord. We know you love all of your children and that through you all things are possible. May He see your good works, deeds, love, and never ending belief in Him and shine His face on you and give you peace and the healing you so desperately need and desire. With love, from another believing mom. Our family will continue praying for you all. Stay strong in your faith.

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  46. Katie, so many laws have changed over the years as far as what Medicaid will and won't cover. I don't know if Medicaid was aware of Caleb's pre-existing condition, but if they were, then to the best of my knowledge they are,required to follow thru until the medical issue is resolved. I could be wrong. My best suggestion is to contact the state advocate for Medicaid. They will be more helpful than what the county wants to provide. Secondly, possibly contact an attorney so you know your rights, many are free of charge for a consultation. Best wishes and prayers for Caleb and your family!

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  47. I saw this on a friend's Facebook page and read your story. Praying, praying, praying.

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  48. MEREDITH VAUGHN PRAYING FOR YOU AND YOUR FAMILY CALEB ON A DAILY BASIS

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  49. Pray for Little CALEB and for You All. Pray That Little CALEB Gets His New Heart Quickly. Keep Faith, Believe and Never Ever Give Up. God Bless Little CALEB, God Bless You All !

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  50. You don't know me,but have been following your story through my cousin, Delora Hartsock. We're praying, praying, praying for your family from Minnesota.

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  51. Even tho you don't know me, Caleb's heart has been on my mind this morning as I prepare to leave for worship services. I can't begin to know or even understand the depths of all you've undergone, together, as a family, but I do know miracles happen. I will place Caleb and his heart at the foot of the cross this morning, as I pray at the altar, and trust that God's perfect will be done in this situation. Be encouraged -- draw strength from our Father as you travel this path, and know that Caleb's young life has touched countless people all over the country. You are true examples of what it means to have faith in all circumstances, and I am praying that today, he receives his miracle.

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  52. I am continually thinking and praying for your precious family! I love you like my own! I pray that God's timing will be sooner rather than later, but that you will have what you need to endure this lengthy trial. You are dear to my heart and a blessing to all those you come in contact with. Please know that God is using you to shine before men!

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  53. Praying for your miracle. God bless your family!

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  54. We are praying for a miracle from God for your family. Tom, Tina, Jack,.and Drake Smith - students of Cindy Cox

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  55. Continuing to pray for little Caleb and your family! Big Hugs to you all!!!

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  56. Daniel, this is Chris from DELTA. Know that our team is interceding for this miracle.

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  57. Daniel & Katie, know you are in our thoughts and prayer this morning. May the God of all comfort be your comfort during this time. May He lavish you with peace, strength, wisdom and courage. May He use this difficult time and story to show His majesty and glory.
    Brian & Melanie Stark

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