Thursday, January 23, 2014

My kid is awesome

I have to share a video with you but it'll have to wait until tomorrow because my internet is slow, so stay tuned.  I took it yesterday at the hospital and it proves my son's awesomeness.  Caleb had his third biopsy since his transplant so we spent the day at Riley.  They used a catheter to go in through his neck to take samples of tissue from his heart.  Before his cath, he had to go and have blood drawn.  This particular nurse had never drawn his blood, and she asked him before she started, "Don't you want to sit on your daddy's lap?" and he said, "No, I'll sit by myself".  I don't think she knew what to do with this nearly-3-year-old who had no apprehension about what she was about to do.  So I took a video of him getting his blood drawn.  He blows us away.

After blood draw, we headed to the cath lab and he got changed into his lovely little gown, which he proceeded to dump bubble juice all over.  I went back with him and stayed with him until he was all the way asleep under anesthesia.  He never once cried.  He held my hand, and laid down on that table and let them put the mask on him, breathed into it steadily until he was asleep.  As unsettling as it is to see your child go under anesthesia, my discomfort was outweighed by my pride.  Caleb is so strong and I could not be more proud of him.  

The cath took about an hour and they allowed him to wake up shortly after it was over.  That was the only hard part of the day; coming out of sedation is hard anyway, and we weren't there of course and he hadn't eaten in almost 24 hours at that point.  He was crying pretty hard for me when they wheeled him into the recovery room where Daniel and I were waiting for him.  He sat on my lap and just laid his head on my chest for a good hour before he was totally comfortable again.  I let him eat a cupcake before he ate his dinner and that helped.  He then proceeded to eat for a solid 30 minutes, including most of the sandwich I had gotten for myself.  For the rest of the night, he was in a perfectly good mood.  I couldn't stop kissing his little face.

I know it might sound weird, but I love going to Riley.  It's like going to my other home with friends I miss and love to catch up with.  When Caleb was inpatient, our transplant coordinator, Debbie, used to always tell me that as soon as Caleb got his heart, we would go home and it would all just seem like a blur, almost like it never happened.  That has not been the case.  I could wake up tomorrow morning in my bed at the Ronald McDonald House and it would feel completely familiar.  But that's not a bad thing.  That place is where my son got better, where we got another chance for a life together as a family, and I will always feel a connection.  It was our home for a year and that doesn't go away quickly.  Or maybe ever.

We visited with lots of nurses, and even some of our friends who are still inpatient after months in the hospital.  It made my heart ache to spend time with people that I so desperately want to have what we have, a new heart for their child so they can go home.  I couldn't get them out of my mind... I talked to a friend, Linda, whose daughter has been there since last July, and their room is next to our old room.  I could see the physical exhaustion and desperation on her face.  I prayed for her last night when I got up in the night to feed Lucy.  I wished I could do something for them.  I know it encourages her to see Caleb.  She told me that she wasn't interested in breaking our record for how long we'd been there.  I hope with all my heart that she doesn't.

This morning we were all exhausted after spending the day in the hospital and getting home and to bed late.  Caleb had physical therapy and I wondered how he'd feel about it after his day yesterday, but he loved it as always.  Caleb has physical therapy twice a week, just for the next few months, to help him build strength after being weak and sick for so long.  He is quickly making up for lost time.  In fact, in his first week he already met his goals for the month!  Brett Fischer, Caleb's physical therapist, has started an organization called Victory Lane that focuses on families of kids with special needs.  Victory Lane exists for the WHOLE family, and not just the child with special needs, which I think is SO important.  I like going to physical therapy too, because Brett is one of those people who gets what our life is like.  You'll definitely be hearing more about Victory Lane because it's a cause that is near to my heart and I hope I can be involved as it grows.  

On our way home from physical therapy, we got a call from Debbie saying that the results from Caleb's biopsy were great, that everything looked great and the team is thrilled with how Caleb is doing.  We celebrated by getting McDonalds for lunch (not my choice) and having a dance party in our kitchen.  We cranked up the music and Jonah attempted to breakdance while Caleb tried to copy.  Daniel's moves were probably my favorite of all, and we finally had to stop because my poor children were desperate for a nap. Caleb slept for four hours... I think he'd earned it.  A full day at the hospital including a heart cath, and he gets up in the morning and rocks it at physical therapy?  That kid could have probably asked me for anything today and I would have said yes.  Good thing all he wanted was a McDonalds cheeseburger.

I know we won't always be the ones getting good news, so I cherish these days.  I remember, all too well, that not long ago we were the ones sitting in a hospital, waiting and watching our child get sicker.  Tonight I am going to pray for those parents, my friends who are still waiting for their good news.  I'm praying for their turn to come to have a dance party and for God to sustain them while they wait, just as He did us.  


  1. Your happy news warms my heart. Knowing Caleb can do normal kid thing like eat cheeseburgers, blow bubbles, read books and dance is truly testamemt to the power of prayer. You and your family are so special.

  2. This just makes me cry with tears of joy! Will pray for continued healing and the other families still waiting. Thank you for sharing. Sincerely, Bonnie Peckinpaugh

  3. I have followed Caleb from the start not only is he awesome but the rest of the family is awesome.Best of wishes and prayers for your family and all the rest who are waiting for their prayers to be answered!

  4. So happy for your family. Love seeing the pictures of healthy little Caleb.God is good. I understand what you are saying about Riley. I feel that way about Hook Rehab. We were there for 3 months. You really form relationships with the staff and in our case others with brain injuries. I often wonder how some of our friends are doing. If their lives are getting back to "normal".The nurses were so awesome. Joe was not particularly easy to handle,and they did it with smiles and kindness. I will always be thankful to them.

  5. I'm so happy to hear Caleb is doing so well and is adjusting so quickly with his new heart. I love seeing all the pictures of his trip to Riley. I am still praying for your family. I pray the other families can get a heart soon so they don't have to be at the hospital so long. May God give them all the strength and comfort they need!!!....Love Donna Richardson

  6. Your kid IS awesome!!! Actually, I think your whole family is pretty fantastic! God bless! :-)

  7. I just found your blog and I have to say your story is inspiring. I am 26 and need a heart/liver transplant. It is comforting to hear how other people cope and show such courage. Thanks for sharing your story, your family will be in my prayers.