Monday, July 28, 2014

New Strong Heart Day

When Lauren was younger, she often asked me to tell her stories of various things. One of her favorites was the "New Strong Heart Day" story. On the fifth anniversary of her heart transplant, I'm writing it down for her.

The last week of July 2009 was a rather lonely week at CHoP because it was the annual summer camp week for transplant and pulmonary hypertension patients. Two of the cardiac Child Life Specialists, the transplant psychologist, several of the coolest nurses, and our favorite transplant doctor were all at camp. On the Friday before, one of the Child Life Specialists had stopped by Lauren's room to remind me that good things often happened when everyone was away at camp. Honestly, I think I rolled my eyes at her and told her to have a great time. We had waited so long that I had almost given up hope of ever getting the call that there was a heart for Lauren.

On Monday morning, some of our friends from Washington DC came up to visit. We hung out in the playroom, took silly pictures, and later I showed them which street vendor made the best gyros.

Late Monday afternoon, Lauren was settling back into her room. It was only a couple of hours until we could start her bedtime routine and then I could go get dinner somewhere.

One of the nurses came by to say that Dr. P was on the phone. I remember being annoyed that he hadn't just talked to me earlier that day. (I guess I was a bit grouchy after spending seven months living in the hospital.) The nurse urged me to go pick up the phone at the nurse's station while she stayed with Lauren.

"We've found a heart."

I was hopeful, but hesitant. There had been a day months earlier when we were all so certain that there was a heart for Lauren and then it fell through. I was afraid to get my hopes up.

I called Tim immediately so that he could come up from our home in DC.  I didn't tell Lauren because I knew that I wouldn't be able to cope with her disappointment if it wasn't the right heart for her.

Lauren's music therapist stopped by the room and offered to have an impromptu music session so that I could deal with some of the logistics.

There were lots of people to talk to and lots of paperwork to sign. Thankfully, Lauren was happily singing and didn't notice that I was entertaining a string of doctors streaming past her door.

One of the surgery residents came by to ask if I had any questions. After seven months of waiting, we had been given plenty of opportunities to ask questions. I did have one lingering thought. Lauren had several abdominal surgeries when she was teeny-tiny. One of those scars runs up-and-down her abdomen. I asked the surgeon if he could make sure that they could do the sternal incision so that it lined up nicely with the one that was lower. I'm sure he thought that I was crazy.

Afterwards there was not much to do but wait. For Lauren's sake, I tried to pretend everything was normal.

After all this time in the hospital, Lauren didn't think too much of the fact that one of the doctors needed an extra set of labs run. She really didn't even think too much of the fact that he also ordered an x-ray and that we'd have to actually go down to the ER to get it taken. We were quite a sight going through the halls that night. Lauren did not like leaving her comfort zone on the sixth floor of the hospital. She wanted no part of riding her tricycle down to get an x-ray, and she was getting a bit too heavy for me to carry her all the way. We somehow ended up with a broken wagon that lurched and bumped as we drug it all the way to the elevators and then all the way back up to her room.

That evening I showed Lauren a book I had borrowed from the Child Life Specialists. I told her that since Miss Meredith was at camp, the other Child Life Specialist was going to let her see one of the really special books. The photo book showed pictures of the ER, what sorts of lines and tubes would be put in during the transplant operation, what sorts of equipment would be in her room on the ICU side after surgery, etc. I still didn't tell her that the transplant surgery was possibly only hours away.

Tim arrived, we read the transplant book again (and again), and then we tucked her into bed as if it were just another night in the hospital.

Lauren often made the respiratory therapists sing when she did her inhaled medicine at bedtime. One therapist in particular had started remembering Vacation Bible School songs from his childhood to sing to her while she breathed from the inhaler. That night he helped her with the motions for "Deep and Wide."

Tim and I then tried to relax in the family room with some dear friends from our adopted church in Pitman, New Jersey. The cardiologist who had followed Lauren since her very first appointments called from camp with his congratulations and best wishes. He had heard that the heart was "perfect" and was excited for us.

We talked to some other doctors and kept hearing that everything was on track for a transplant later that night. Around midnight we all needed some sleep. Tim took over my bed in Lauren's room (also known as the couch), and I squeezed beside her in her hospital bed.

The team from the OR came to get her at about 1:30 in the morning on July 28th. Lauren woke up briefly when she saw everyone in scrubs and asked me, "My new strong heart?" I answered yes and we told her how much we loved her as the anesthesiologists started giving her the first sleepy medicines.

I know that many people around the country were praying for Lauren and anxiously waiting for Facebook updates that night. After walking Lauren to the OR, Tim and I went back to sleep. I thank God for the peace he gave us that night, a peace that surpassed all understanding and allowed us to get some much needed rest. We woke up when the nurses came with updates from the OR, but we sadly missed a congratulations phone call from two special doctors serving in Afghanistan.

We had been told to expect the surgery to take at least four to six hours. After about two hours, we received word that her new heart was beating. We talked to the surgeon about 5 o'clock that morning, and he was so pleased with how well she was doing that he was going to extubate her as soon as she got into a room in the ICU instead of waiting for a day or so. We were able to see her by 5:30 that morning, and she was doing better than any of us expected.

For the first day or two after surgery, she slept most of the time. Painkillers plus heavy doses of Benadryl as part of the immunosuppression protocol made her really tired. Occasionally she would wake up and request a movie. After months of watching Dora DVDs, I was incredibly sick of hearing "Lo hicimos" and "Backpack, backpack." I dared to sneak an animated movie into the DVD player while she was napping. It didn't work. She woke up and asked, "What is this?" in the most serious, you've-got-to-be-kidding-me tone I've ever heard. She asserted her preference for Dora and then fell back asleep.

She was awake enough two days after the transplant to put a new strong heart bead on her growing strand of Beads of Courage. I joked with the Child Life Specialist that it was a glorious night when my biggest worry was how to drape all the beads over her bed so that she could see them.

She seemed to fly through the recovery process and was feeling a little bit better every day. Within four days, she was smiling, working puzzles, and singing again.

We were all surprised at how quickly she recovered from her surgery. On the Monday following the transplant, the cardiac exercise physiologist rushed into her room. He had been gone on vacation the previous week and was a bit panicked when he heard that Lauren was in the ICU. I let Lauren tell him why she was in a room on the ICU side of the floor. She looked so great that he didn't believe she had surgery until she lifted up her shirt to show him the scar.

During our months waiting at CHoP, I had spent many hours pushing Lauren's IV pole behind her as she rode around our floor on a tricycle. About a week after the transplant, her surgeon made an offhand comment about how he hadn't seen her riding around the halls. Challenge accepted:

It really is amazing how quickly her body was able to heal. It's even more amazing to see how much progress she's made over the past five years.

Happy Heart Birthday, Lauren!

Ben and MeI'm sharing a "years ago" story corresponding to each letter of the alphabet for the Blogging through the Alphabet challenge hosted by Marcy at Ben and Me. I often tell my children stories of things that have happened in our past, and now I'm taking the time to write down those stories.

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  1. What a miracle and an amazing story! So neat to hear it again. :-) Now to go get some tissues....

  2. Oh my goodness! What a lovely, amazing story! I was close to tears the whole time with joy in my heart. The Beads of Courage sent me over the edge. My dad participates in a woodworkers group that makes containers to hold those and it is important to him. To see it in use and hear about it made me smile. Happy Heart Birthday and thank you so much for sharing part of your story. - Lori H

  3. Such a wonderful story. I remember praying at the time but it was very meaningful to read the "whole" story.

  4. I loved reading about Lauren's heart story. It brought tears to my eyes.

  5. What a wonderful story!! Happy New Strong Heart Day!

  6. What an incredible story and an even more incredible God! Praising God with you.



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