Yesterday was a big day as Becky was moved to the floor.
When the morning began, I suspected that we would be moved to the floor. After all, I needed to leave for several hours to get my second Covid shot and Michael had traffic court. Things tend to come in threes, so I figured something would be added to an already chaotic day. I was right.
During morning rounds, the decision was made to transition Becky to a regular nasal cannula. Once the high flow was removed, there was no longer a medically indicated reason for ICU care. The orders were put in for a transfer pending an open bed on the floor. The floor is hospitalese for the main floor of the children’s hospital. For a PCICU patient, it’s essentially a step-down unit. Discharge to home is usually measured in days once you arrive.
I left shortly after rounds to drive out for my Covid shot. I arrived four hours before my appointment. The nurse asked me if someone gave me permission to show up early. I wanted to say “Becky” but I explained my situation and was quickly seen in the clinic. Since we are caring for a critically ill child, Sam and I are considered healthcare workers in the state. I am grateful for the vaccine and the protection its affords Becky.
Meanwhile, Sam attended traffic court with Michael via Zoom. This is not a new infraction but the rescheduled hearing from last October. The first time Michael was called to court for his speeding ticket, I was in the hospital having Becky. As we were unable to attend with our lead-footed son, the hearing was rescheduled for this week. And now I’m in the hospital with Becky again. I’ve told Michael to knock it off and slow down as there seems to be some cosmic connection with his driving and Becky’s hospitalizations.
After I returned, Greta and I packed things up and prepared for the move downstairs. I wasn’t as emotional leaving the PCICU this time. I figure, we’ll be back at some point. It was a joyful trip through the unit full of masked smiles and hugs. I asked our nurse to take the long way out so we would walk by Charlotte’s room. Charlotte’s parents, Maggie and Tim, were waiting at the door to say goodbye to Becky. Just like last time, Maggie and Tim were truly happy to see Becky leave the unit.
We settled into our new room and Becky had a good night’s rest. Today we fiddled with Becky’s feeding schedule and started her home course of diuretics. I reconnected with the floor cardiology team which first followed Becky in the NICU. Tomorrow she will have an echo and a BNP blood test to determine the remaining extent of her pulmonary hypertension.
While yesterday was a big day for Becky, it was a huge milestone for our friend, baby Charlotte. March 10 marked the 100th day that Charlotte has been in the unit.
She has never been home, never outside a hospital room. Maggie and Tim have lived in the RMH since her birth. This little girl had her first open heart surgery when she was just two days old. Earlier this week, she had her second open heart surgery. Charlotte has been intubated for all but 23 hours of her life. All told, she has made four trips to the operating room and faces another open heart surgery before discharge.
Charlotte’s story is more so one of great inspiration than great suffering. She is the tiniest of warriors, cheered on by parents with the most compassionate of hearts. I suppose suffering can make you bitter and resentful. Or you can choose optimism and gratitude. There isn’t much in between. Maggie and Tim have chosen the latter. I imagine it makes a world of difference for Charlotte.
Anyways, the PCICU staff didn’t let this 100th day go unnoticed. There was celebrating to be done. Charlotte’s door was decorated with signs and pictures. The nurses helped Charlotte dress in a special outfit to mark the occasion. When the cookie party began, the staff gathered outside her door and had an impromptu dance party, Kool & the Gang playing on an iPhone. Doctors and nurses took a brief break from their life-saving work to acknowledge all that Charlotte has achieved. Greta and I watched this joyful scene from our side of the unit. It may seem strange to celebrate something like this but it actually brings some normalcy into the situation.
My favorite part of the day came when Maggie sent me a picture of Charlotte. This is the first outfit Charlotte has ever worn, the first clothing to touch her body. For the briefest of moments, Maggie got to be a regular mom, making an ordinary decision: selecting a special outfit for her little girl. The nurses helped Maggie dress her, carefully maneuvering around the IVs and tubes. And then it was time for a picture. A very meaningful picture, 100 days in the making. It brings me to tears.
And it made me realize the importance of the hair bows and the flower clips. It’s not silliness or fluff. In fact, I always appreciate it when a nurse takes the time to play dress-up with Becky. It brings a little dignity to this place, a bit of beauty. It also brings hope. Hope that one day, dressing your little girl and finding the perfect hair accessory will replace decisions about surgical interventions and medications. That’s what those oversized headbands on our little girls’ heads represent. It’s not a fashion statement.
It’s a testament of faith.
*Charlotte’s picture and story used with permission.