Thursday, September 26, 2013

Caleb has a new heart!



Look at my sweet son... sleeping calmly!  We are now 24 hours post-op and Caleb's new heart is beating stronger than his old heart ever did.  This new heart is the most beautiful gift from God.  Yesterday when the surgeon took out his old heart and put the new one in his chest, it immediately started beating without even having to be shocked.  And it was beating vigorously!  To think of how good he is going to feel in the next few days as he gets to fully wake up and start to feel like himself.  I sit here looking at him and I just grin this goofy grin all day long.  Caleb is a miracle.

I look at the monitors and can barely believe the numbers I see, numbers we have never seen before.  The surgery could not have gone better and now every doctor that looks at him says, "He's just doing great."  GREAT.  Doctors never say that to us!!  When we met with the surgeon immediately after surgery, when we sat down in that little room, I just cried and laughed as Dr. Rhodefeld went point by point, describing each aspect of the surgery as being perfectly smooth.  It was very different than other meetings with doctors that we've had in those little rooms, to say the least.  The last thing the surgeon said as we started to stand up and go back to give the news to our parents was, "You have a completely new little boy on your hands."  I can't imagine hearing more beautiful words.

Today is mostly a day of resting and recovering for Caleb (and for us).  He is still on pain medicine that makes him groggy so he mostly sleeps.  He wakes up for little periods of time, usually wanting a drink, and he'll stay awake for just a few minutes before peacefully dozing back off.  He is already totally off of oxygen support and breathing peacefully on his own with oxygen sats in the upper 90's.  I have been amazed at how calmly he has accepted this room and these new doctors and nurses in the ICU.  I fully expected him to wake up confused and distressed at his new surroundings and all the tubes... not at all.  He has been calm and polite, as usual, waving to people at the door who come by to see him and being totally fine with us going out of his room when we need to talk to someone or get some food.  He is so secure and safe here!  And it is another example of the grace of God that Caleb is so accepting of the hospital environment and staff.  Thank you God for giving my son a greater sense of peace than even I can provide him as his mommy.

Now that heart problems are mostly in our rearview mirror (stop for a minute and think about how crazy THAT is!), we are starting an entirely new journey as we learn about his immune system and what it requires to keep his body from rejecting his new heart.  Today he has started a 5-day course of medicine that is one of the "big guns" of immune suppression.  This medicine makes his white blood count (the cells that fight off illness and infection) go down to almost zero so that his body is not able to identify his new heart as "foreign".  As that treatment is going, the doctors will gradually introduce his new oral medications that also suppress his immune system.  Caleb will have a biopsy of his new heart in the next week or two to determine how successful these medications are being.  He will be on immuno-suppressants for the rest of his life, and that will mean some lifestyle changes.  We have a lot to learn!  We finished one marathon and now we are starting a brand new one that we know very little about.  But God has prepared us for this and we are taking each step with strength and joy!  What a gift we've been given!  What a crazy life we have!  

A couple quick points of interest:  
1) We can't talk on cell phones in the ICU, but we have our laptops for email and facebook.  If you call us, just know you won't be able to get a hold of us and we'll have to call you back at some point. 
2) We don't know anything about where his donor heart came from.  We aren't allowed to know any details at all.  We just pray for that family all the time, so grateful for their gift.
3) We should be in the ICU for several days before we are back up to the good old Heart Center.  Projected amount of time we will be in the hospital is about 2 weeks if all goes well.  Then Caleb will be discharged to stay with us at our apartment at the Ronald McDonald House for another couple weeks before we can go home.  We should go home just in time to get settled before Lucy is born!  
4) Yes, I am taking care of myself.  While Caleb was still on sedation meds, I went to the RMH and slept for 10 hours last night!  I am taking advantage of this time to sit a lot.  
5)  Jonah is doing great, he's staying at Grandma Joyce's and will get to see Caleb once we get discharged to the RMH in a couple weeks.
6)  Our biggest prayer request now is that Caleb's body accepts his new heart and that there will be no signs of rejection.  Yesterday they actually discovered he has developed another antibody in just the last few days that the doctors did not know about until after the transplant.  Fortunately, it is a very low level and it is not an antibody typically associated with rejection.  But they had to start what is called IVIG treatment to hopefully keep this antibody from causing problems.  They will check again in a week to see if that immediately cleared it up.  These stupid antibodies!  I am praying boldly that God would take this out of Caleb's body and we won't hear about antibodies anymore!  For now, the team is not really concerned but we won't really know if it's a concern until next week.

We can't thank you enough for all the love we have felt and the outpouring of support in the last day.  We have felt your care like a giant hug to us here in the hospital and we want you to know that we often thank God for all the people who care about our family.  I will try to update once a day or so, and post pictures too!

29 comments:

  1. How awesome is our God?

    Every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows. James 1:17

    ReplyDelete
  2. Look at those beautifully pink lips!!! :)

    ReplyDelete
  3. Look at that precious face!!! How sweet!!! You have been given a miracle by GOD himself!!! I sat here & cried as I read your post. Yes, your life has changed, but he will still be able to go out & do things. Shayla was able to go to Prom one day shy of being 5 weeks later after her transplant. She wore a mask when inside the building. I am so happy for you!! My prayers will continue for your family.

    ReplyDelete
  4. We are so happy for Caleb and for your entire family. Our God is a miraculous God and you have been such an inspiration of faith and how leaning on the power of God can get you through all types of situations! Our prayers continue that there are no signs of rejection and you get home in time to welcome Lucy!!

    ReplyDelete
  5. Praising God with you and continuing to pray for all of you!

    ReplyDelete
  6. Tears of joy! I have learned so much about faith, prayers, perseverance from this little guy. It will be such a blessing to watch him grow up. Thank you so much for being transparent through this process. You will not know until heaven the impact that you have made on so many of us. Fervent prayers continue as his body welcomes its newest part. ~Christy Ragle

    ReplyDelete
  7. My very first thought was about those pink lips! <3 What a beautiful, sweet spirit has fallen on us all as we seek God's face and praise His name! I have learned a new way to pray these last two weeks~BOLDLY! So many people have been touched by this miracle~all across the world. I continue to rejoice and pray for the days ahead. Love you all so much! Miss Pam

    ReplyDelete
  8. The beauty and wonder of pink lips and eye lids! So thankful he is resting and for God's grace on C as he finds himself in a new room around new people. Praying specifically for his body to continue healing beautifully and for the upcoming medications he will begin. Love you all!

    ReplyDelete
  9. Look at his lips!!!!! I was so giddy all day yesterday. I am so unbelievably happy for your family and sweet Caleb. What perfect timing God has. I am so thankful he is recovering so well and is so calm! What a blessing. Still praying, of course. Just think, in another month or so.....home. God is so good.
    Lots of love to you all!

    ReplyDelete
  10. God bless your sweet Caleb, he looks so precious!! We will continue to pray BOLDLY for Caleb's miraculous, complete healing!! God is so faithful and he loves us all so much! God bless your family!! Thank you Lord for all your gifts, we give You all the praise and glory!! Rita Reuter

    ReplyDelete
  11. We also have been praying for all of you and for the donor family. Katie came over yesterday morning with the news. ( I burst her bubble and I said that I had already heard the blessed news. I DO NOT KNOW WHAT ANY ONE OF US WOULD DO WITHOUT THE MIRACLE POWER OF OUR GODS GRACE.Peace and Love to you. Vicki Mitchell and Katie Mitchell Steele

    ReplyDelete
  12. Glad to hear that a new chapter has begun in your family's life.We're praying for all of you and for God's comfort on the donor family.

    ReplyDelete
  13. That's pretty rad. Glad to hear! Lots of love-

    ReplyDelete
  14. Katie! Thank you so much for this update! I am so happy for you and praying against rejection!
    xo rachel

    ReplyDelete
  15. Praise God for his work!! I BOLDLY proclaim that his body will not reject this perfect gift. Praying for the donor family as they begin to heal as well. I'm sure they know what a precious child Caleb is and what a testimony to their faith this is.

    ReplyDelete
  16. "Thank you God for giving my son a greater sense of peace than even I can provide him as his mommy." - YES!!! Love you guys and we're thinking and praying for you. Can't wait to see you again and hear all about it, and meet Caleb in person. - Faith

    ReplyDelete
  17. You don't know us ,but wanted you to know our church has been praying for Caleb and your family all thru this ordeal .Caleb became like our own flesh and blood ,we cried and Praised God when we heard the news .God is so faithful. Love and prayers to all your family, Will continue to pray and believe God with you for Calebs total recovery..

    ReplyDelete
  18. SO EXCITED for you guys. I think of you often. Let the new journey begin!!!! You guys have been running the race set before you well.

    ReplyDelete
  19. I could not be more excited for you! My co-workers don't know your family, but they anxiously awaited the updates I got off Facebook yesterday and cheered with me when the good new came that he had a new heart. Thank you for your strength and for sharing your families' story with us. You have no idea how much I admire the faith you have shown. God is so good, and I will continue to pray as you start the next phase of your journey.

    ReplyDelete
  20. So happy for your family. Jesus loves Caleb soo so so much.

    ReplyDelete
  21. So happy for your family. Jesus loves Caleb so so so much

    ReplyDelete
  22. So happy for you and your family! Love and prayers for Caleb's amazing future!

    ReplyDelete
  23. Daniel, Katy, Jonah and Caleb:
    Praise God; Caleb has a new heart! :) I can not even tell you how happy I am for all of you. I have been praying for you and God laid Caleb on my heart the day he received his new heart. I prayed for him most of the a.m. and then that afternoon Jackie texted me to tell me the great news. I would love to come see you all once Caleb is all settled in back on HC if that is OK. xoxoxoxoxoxoxoxoxo Miss Pam

    ReplyDelete
    Replies
    1. Oh Pam, Caleb would love to see you!

      Delete
  24. I am so HAPPY for you and your family. God is indeed good and faithful! Thank you for sharing your story and allowing us all to share a part in this wonderful work of GOD. God is LOVE and LOVE WINS!!!

    ReplyDelete
  25. AMAZING! SOOOOOO happy for your family, so greatful for God's merciful gift and blessed by the answered prayer only 1 week after the rally (BTW, if that doesn't show people the amazing grace of God & how powerful prayer is when his people come together I am not sure what will!) & yet so sad for the donor family. We have been on that side of the organ donation and though it is difficult I hope & pray knowing someone goes on living stronger than ever, because of their gift is comforting to them as it was for us. Praying they too are recovering, comforted and at peace with their loss.

    ReplyDelete
  26. You are such an inspiration to me. Your faith in God and your positive outlook on life make me want to be a better person. I look at my life daily and count all of my blessings. God is good!

    ReplyDelete
  27. Our church and family have been praying for you - how exciting!!

    ReplyDelete
  28. I have followed your blog and prayed every so many times for him to get a heart. What a wonderful miracle!

    ReplyDelete