Sunday, November 4, 2012

Ups and Downs

Good morning from Riley Children's Hospital... I am sitting next to a very precious little boy right now who just fell back asleep while watching Finding Nemo.  It's really quiet in this room this morning so I thought I'd take a second to send out an update.  

Yesterday was a day with extreme highs and lows.  In the morning, Caleb was awake and talking after coming off the breathing tube the previous evening.  We were so encouraged by that step, to see Caleb able to breathe on his own.  I even got to hold him for the first time since Thursday and it was amazing. For a few hours, we felt almost blissful... until the middle of the afternoon.  Caleb's oxygen level started dropping, and dropping, and wasn't going back up.  Everyone rushed in and they put a bag on his face and tried to get his oxygen to come back up but it didn't for several minutes.  The nurse was standing right there with the epinephrine while the flurry of doctors and respiratory team tried to get things back to normal.  Fortunately, after about 10 minutes, he settled down and the numbers started going back up, but it was terrifying.  We were so shaky and so was he- it really scared him to see everyone rush in, and of course for Dr. Raj to put the oxygen bag over his face.  After that event, it was so hard to remember that only a couple hours before that, we were in great spirits.  It just reminded us that even though Caleb is fairly stable, his heart is still incredibly sick and he needs a new one desperately.

The rest of the evening was uneventful, and Caleb went to sleep at about 8 and slept all night, 12 whole hours, so that was great.  His oxygen steadily improved all evening and has been in the high 70's since then, which is really good.  This morning, he actually looks better than he has in a couple weeks, which makes me realize just how sick he really was at home and we didn't even know it.  His puffy face is totally back to normal and his lips are pinker.  He looks like a different kid than he did on Wednesday night when we were trick-or-treating... I still can't stop thanking God that his heart didn't stop sooner.

Today will be another day of rest for Caleb.  Tomorrow we will have a lot of meetings with doctors, insurance, and who knows who else to get Caleb on the transplant list as soon as possible.  He should get listed quickly, and then the real waiting begins.  In the meantime, we have to pray fervently that God would sustain his life until a new heart arrives.  I had really hoped we could just coast until he gets a new heart, but yesterday he proved to us that he is still fighting for his little life.  We have to choose, each day, to celebrate that day's successes and brace ourselves for the day's challenges.

Daniel and I are doing fairly well... we're tired of course, but we're glad we have each other to go through this together.  The hardest part is the ups and downs; they are excruciating.  We get great news, we get awful news, and back and forth.  Just when we relax a little, he has an episode.  Being here takes more patience and strength than I feel like I can muster sometimes, but it helps to just focus on one step at a time.  At the end of each night, we're reading Scriptures over Caleb and praying for strength for the next day and for God to help us keep fear out of our minds.  Each time we go to God asking for help, He has given it and we get glimpses of being refreshed and uplifted.  We are actually sleeping at night, and eating when we can, and doing our best to take care of ourselves.

Here's what you can pray for specifically today:
1- for Caleb's sats (oxygen) to stay up
2- for Caleb to feel as comfortable and secure as possible
3- for our insurance company to agree to cover the transplant- which is the first step towards Caleb getting a heart

We send our love from inside our 12-foot-by-12-foot-hospital-room-home.  I think it's safe to say that I'll be able to update this blog regularly so keep checking in! 


  1. Thanks for taking time out of all the craziness to keep us are in every single thought and prayer all day, every day!

  2. Good Morning Katie and Daniel,
    God gave me a scripture about Caleb today...
    Psalm 139 (with personalization)
    13 For I created Caleb's inmost being;
    I knit him together in Katie's womb.
    14 Praise Me because he is fearfully and wonderfully made;
    My works are wonderful,
    You know that full well.
    15 His frame was not hidden from Me
    when he was made in the secret place,
    when he was woven together in the depths of the earth.
    16 My eyes saw his unformed body;
    all the days ordained for Caleb were written in My book before one of them came to be.

    The other thing that sticks out to me in your blog is that you are in a 12 by 12 room. In the Bible... the number 11 stands for chaos and the number 12 stands for authority. (when Judas had died and after Jesus ascension) It was after they added the 12th disciple that the Holy Spirit was poured out on them in Pentecost. God needed for the 12th disciple to be added before He could make that happen.
    You and Daniel and your family are STANDING IN A 12 BY 12 ROOM!!!! You are on the SOLID ground of Kingdom Authority!!!
    I glorify the Lord for His goodness to you. I ask for Jesus to be continue weave Caleb's body together and recreate his heart - through whatever means He chooses. I invite Him to be in the prayer.

    Believing with you!

    1. Psalm 139 is the Scripture we prayed over Caleb last night! Thanks for your encouragement.

    2. Katie and Daniel, please know that you are on the prayer list from Sugar Grove UMC in New Castle, Mt. Summit Christian Church and Yorktown Christian Church. Our hearts go out to you in this difficult time and I am trusting God to surround you with grace and confidence in a successful match and transplant for Caleb.

      In Christ's Love,
      Pastor Mark Parkinson,
      Sugar Grove UMC

  3. He is so beautiful! Thank you so much for the update. It's good to hear how each of you are doing. Your comment about Caleb looking better now than he has the past couple weeks really hit home with me. As you know, Eli was 10 weeks old before he was even diagnosed. I keep thinking "shouldn't I have known?!?" but I just have to remind myself that it's all God's timing and will work out according to His plan. You and Daniel are amazing parents, those two boys are so lucky they're yours! Keeping the prayers going!!!! (((heart hugs)))

  4. I am praying for you all. It is amazing to see your positive attitudes and I know God will help see you through. I pray that you two get the rest and peace that you deserve, I pray for Caleb's healing, and I pray for your family and friends that are struggling through this with you. May God be faithful and answer our prays.

  5. Thanks for the update Katie. I wish I could be there for you in person right now but know that I am praying for you. I pray that God will sustain Caleb while he waits for a new heart and that He will hold you and your family up and give you strength. As soon as I'm able I'll come to give hugs and whatever kind of support I can.

  6. I stand amazed at the awesomeness of God's power in Caleb's little life. I stand amazed by the power in prayer, the power that your faith has in sustaining you and Daniel's journey in the hope for Caleb's Heart. I pray for the family who will offer up their child's heart so Caleb can continue to fulfill God's purpose and their child may live on with Caleb. Our thoughts and prayers are with you and all of your family daily!

  7. The LORD is right there with you all. Lean hard on Him and His promises. Praying.

  8. Continuing to pray for all of you.

    Dale Pace

  9. Katie, thinking of you and Daniel a lot these days. Glad that Caleb's oxygen levels are back up, what an emotional roller-coaster you guys have been on. Thanks for being faithful witnesses to how the Lord is sustaining you through this time and for not allowing Satan to steal your joy. You guys have a special calling as Caleb's parents - as you know, He will give you all that is needed to fulfill it. We look forward to watching how the rest of this story will turn out. Love you guys, praying for you.

  10. Thinking of you every minute~echoing Tisha's wonderful revelation in Psalm 139 and seeing God's mighty hand at work. So many voices are being lifted up in prayer for all of you. My special prayer tonight is that you have that peace which passes all understanding. Love, Pam Snell

  11. Hi Katie and Daniel,
    We just wanted you to know that your "second" church family up in South Bend is keeping your little guy before the Throne. We pray for strength to face the day (and night), and praise our Lord that He is faithful to give this to us. We will petition the Lord along with you to work His will, but also make our own will known for keeping this precious son of yours in our world. We love you guys and your whole extended family very much.
    Jason Nicholls for Redeemer

  12. Sending prayers for you and your family...

  13. I have been thinking of you all since I read this post last night. My prayers have been going up continuously. My heart breaks for you that you have to witness your child's oxygen levels decrease at an alarming rate-I am all too familiar with that. However, I do know that in those dark hours, I felt the Lord's arms around me and Him whispering "I am here with you". I will always remember that and my faith has never been more solid. I praise God that you know that faith as well.
    I will continue to pray for Caleb and your family.

  14. Tim & Rachel U. shared your blog with us (Rachel is my husband's sister) and our heart aches for you. We are praying for your family, we know personally the power of prayer through our daughter's struggles, we also know that God can heal and do amazing things, we pray that He would sustain Caleb during this time. Trusting in God, Lisa & Brad