Another day of steady progress in the PCICU.
Becky had a good night and was resting comfortably this morning.
The big news of the day is that Becky’s chest tubes and pacing wires were removed. Almost immediately, she turned on her side, arched her back, and settled in for a nap. Becky began sleeping like this leading up to her surgery, as the picture below shows. Dr. W observed that children with Down syndrome seem to find this sleeping position comfortable as it allows the airway to open more. Because of low muscle tone, Becky’s tongue sticks out but can also fall back when sleeping and block her airway. Dr. W believes this sleeping position is an adaptation for these babies.
Thankfully, Becky’s chylothorax is minimal enough that her feeds will not need to be changed. She still has pulmonary hypertension and there is a difference of opinion regarding her treatment going forward. The Pulmonary Hypertension team would like to start an additional medication. Becky’s cardiologist and the PCICU doctor want to see how she does once her lung re-inflates fully and her chyle output diminishes. A compromise was made to hold the second medication and observe the hypertension numbers in a few days.
Becky looked worn to me today. Her diuresis continues and the team wants to keep her a little on the dry side. Not dehydrated by any means but it’s important to continue flushing excess fluid out of her system. She looks a little sad in this picture but was a happy baby most of the day. She kept her grandparents entertained on a video call for quite some time.
Becky must be swaddled frequently or she will pull on her lines. She has been experimenting with her tongue and managed to hook it around the cannula. She also usually her ample checks, widely opening and closing her mouth to pop the cannula out of her nose. Quite the party trick.
Greta stayed with Becky for several hours while I returned to the RMH for lunch and a nap. When I walked into the kitchen, I saw a woman wearing a red volunteer apron and working in the kitchen. When she turned around, I noticed that she has Down syndrome. It’s the first time I’ve seen an adult with Down syndrome since Becky’s birth. And I was intrigued. It was like coming face-to-face with future Becky.
I introduced myself and asked about her work at RMH. She told me her whole scheduled and mentioned that she likes to Zoom with her brothers and play bingo. As she returned to her work, I took my lunch and sat in the dining area. I purposely sat where I could watch her. I tried to be discreet but I just couldn’t take my eyes off her. The RMH kitchen is large, with three separate cooking stations, sinks, and appliances. She carefully wiped down every counter top, lifting each item, cleaning underneath it, and gently placing it back. She worked slowly and methodically, careful not to miss even the smallest spot. The air was filled with the lemony scent of Clorox wipes.
When she finished the counters, she opened a cupboard and removed a stack of paper coffee cups and lids. She walked over to the coffee station and set up the cups for tomorrow morning. She separated out each cup, placing it down in a precise line. Three across and two deep. She then topped each cup with a black plastic lid. This was done with such care, as if she was handling expensive Waterford crystal.
Maybe it sounds silly, but I found myself tearing up as I watched this simple scene. Sometimes it’s hard to imagine Becky without oxygen and tubes, monitors and lines. It’s hard to believe that she will walk and talk and play. Since her birth in October, she has been in the hospital four separate times and had three surgeries. Normal life seems very, very far away. But watching this woman work somehow gave me hope for Becky.
And gratitude for that little yellow McCafe cup and impeccably clean kitchen.