To Our Medical City Children’s PICU Family

We’ve tried to keep track of all the people at Medical City that played a role in Claire’s recovery to date. There will be spots where our memory fails us: please forgive us if your name should be in that spot. We are forever indebted and grateful for what the administrative, nursing and doctor staffs did for Claire and our families for the past two weeks.

This letter marks the beginning of our thanks to the following (please forgive our poor spelling):

Doctors: Olsson, Sandel, Rhee, Fanning, Matson, Lanoue, Majeed

Transport Team: Ken, Misty, Jason

Nursing: Dalia, Sarah, Andrea, Kara, Christina, Eziaha, Andrew, Jimmy, Linda, Tai, Carla, Lauren, Carmen, Elaine, Marina, Asia, Susan, Janet, Candice (Nurse in Training)

RTs: Sheila, Tina

Chaplains: Brian and Jim

PT/OT: Erin, Kayla

Child Life Specialists: Margherita and Brittany

For legal reasons, and because some people bent the rules for us, we will be sharing some of the stories without the names (we don’t want to get anybody in trouble). Know that while we met under the worst imagined circumstances, we are so blessed and thankful to have met you.

The night nurse that was with Claire nearly every night became a face of hope for me. I was comforted whenever I was in the room with her: she talked gently to Claire and comforted her when she was upset. On the night before extubation while we were testing Claire’s ability to breath on her own, I didn’t sleep. Claire was initially having a hard time breathing and her breaths per minute average kept dropping to four, then two followed by a flat line. I could feel the stress flowing through my body. What comforted me was watching the night nurse show the same concern. She called the respiratory therapists and doctor and protected my daughter. I will always remember the nights that she was Claire’s angel.

The cult of personality in the PICU is amazing. We told our doctor last night that the care from a medical and emotional perspective was unparalleled. We know that the phrase “we couldn’t have done it without you” is hackneyed and tired, so we won’t say that. What we will say is that we are so glad that we did this with you: you equipped Claire for recovery during these first two weeks. You equipped us to begin caring for her and gave us the tools for the long road ahead.

You gave us the chance to begin putting the pieces together as a family. On a quiet Sunday, a rebel doctor and group of nurses let our daughters see their sister again as she took wagon laps around the unit. You allowed us to be together as a family again for 30 minutes. We got to watch our daughters encourage each other and give Claire strength. It’s so satisfying knowing that you shared that with us. Autumn and Heidi thank you for sharing popsicles with them too.

The last week was particularly encouraging following the first week of dim uncertainty. One nursing duo gave us strength each day as they shared in the small bits of progress. One nurse shared her excitement with us when she described the different types of cries and sounds Claire was starting to make. We were always looking for the slightest signs of progress: it made us cry when we heard that someone else was being as attentive as us. Her story made us cry more.

When we entered the hospital, we needed professionals to save Claire’s life and make sure additional injury didn’t occur. The PICU were very professional. As the last two weeks evolved, however, we also needed more and more emotional support. The PICU were more than professionals. They were advocates for Claire and friends for us. They shared in our despair and hoped to be astounded.

We got many visitors while we were in the PICU. Family and friends were joined by other PICU nurses and doctors who would come in on their off days or when stationed in another unit to see how Claire was doing. This meant a lot to us and you are always welcome to stop by wherever we are and check on Claire.

These stories just begin to describe the two weeks at the PICU. Other stories will come to mind and we will share them as they surface.

When this began we had a small Texas family. Now it’s bigger than the one in Colorado. We already miss our PICU family and will see you soon.

And Dr. Sandel, I owe you a bead.

Tuesday, June 15: Update

We’re at Baylor Our Children’s House which will be referred to as OCH going forward. We’ve been admitted, signed numerous forms and registered for our first meal. After our new family orientation at 1:00 PM CDT, it will all be official.

It is a bittersweet move because we had to leave our Medical City PICU family behind. I will have one more update later today regarding those wonderful people. We made sure to get one last parting shot of Claire in her room.

We had been cautioned that we may be sharing a room at OCH. We’re not! We have a double room right now all to ourselves. I don’t expect it to last for the entire rehab, but it’s nice to start out with some privacy.

Claire has always been strong-willed and never hesitated to share her displeasure. She made sure everyone knew she was uncomfortable during the transport.

The transport took a lot out of Claire and she was eager for a nap when we got settled in the room. We’re glad she is sleeping and sounding so much better as she dozes. Her lungs aren’t as heavy sounding and she’s getting better rest because of it.

Thank you for your prayers during the transport. We have a long road ahead and we hope to have good news to share for most of the steps on the way. We aren’t naive enough to think it will all be rosy, but we take comfort knowing that we have such strong support and hopes behind us.

Mini-Post: We’re off to Baylor

We’re leaving for Baylor in about an hour: the scheduled departure is 10:00 AM CDT. I don’t anticipate being able to give another update until later tonight. Please keep us in your prayers today as we get Claire settled and we meet with the team at Baylor. I anticipate that we will be having some candid, sobering discussions today. It’s going to be difficult to hear, but we will be reminding ourselves that we are hopeful Claire will defy expectations.

Talk to you soon.