Day 31: Botanical Garden Christmas Lights

Copied and back-posted from our CaringBridge site for permanent record here.

December 18, 2020, written by Mama

Darling Nurse T--- had such a sweet idea she implemented on Friday: She had Thomas "make" some Christmas cards for his siblings. She dipped his fingers in ink and then held his fingers to draw a Christmas tree and "I love you" card for them, which she then made duplicates of. That goes a long way for a Mama's heart.

Friday was another day intended for Thomas's extubation that got "scrubbed." We are not pushing for extubation to occur sooner than is safe or prudent. However, I can speak for myself, my mother's heart cannot help but become full of hope when the team is taking the steps necessary to implement the plan to extubate the following morning--and some challenge arises yet again, day after day.

Charles Dickens village display

On Friday morning, Thomas has been stable for about 24 hours. Surgery stopped by as per usual around 6:45 a.m. and said Thomas looked good: green light! PICU Attending stopped by next and said Thomas looked good: green light! Then within the next 15 minutes, one of Thomas's surgical drains began outputting frank red blood (which means a fresh bleed) to the tune of 135 mL in one hour and 109 mL the next hour.

Roasting s'mores over an open fire

My heart sunk. Anything that big is an automatic delay and starts back the clock for wanting to see about 24 hours of stability before extubation. More imaging was ordered on Thomas's abdomen but it showed "no significant changes," which meant no new fresh bleeding. Labs like CBC and TEG were ran throughout the day. Thomas received three transfusions of blood. Ultimately, we can't know for sure but we think perhaps when Thomas's position was changed, as it is every two hours, a clot got broken free, which allowed fresh bleeding for two hours until he clotted again.

I spent the day writing Christmas cards for doctors and nurses instead.

I had Chris bring me a van full of children and drove them 40 minutes to the elegant Daniel Stowe Botanical Gardens: We have attended many homeschooling events there, but never had walked through their stunning Christmas lights display. I had wondered if any kind of Christmas lights could justify the price when I can drive around a neighborhood to see lights for free, but I will attest that I think this was worth it.

One can buy beer, wine, liquor, hot cocoa, coffee, dinner from food trucks, and s'mores to roast over an open fire. We ordered the s'mores which were, of course, overpriced, but very convenient! The evening was really lovely and we enjoyed singing along to a John Denver greatest hits CD during our two long drives (per usual, I got lost, even using my GPS, thus lengthening our car time).

Watching a train zoom past

In the evening, Thomas achieved the milestone of starting his first enteral nutrition in a month! The team began a trickle feed of formula through his J tube, which goes straight into his intestines.

Back at the hospital nearing midnight, Thomas had another pain episode in which his heart rate and blood pressure get much too high. We have found this past week challenging because his pain control has been inconsistent. With daily plans to extubate foiled, his pain and sedation medications were being changed with every 12-hour shift change. The night nurses had the doctor on the floor watch Thomas in so much pain even though we had given every PRN dose available over an hour, plus some of them three times, and the doctor immediately increased all three of his drips.

As I write this twelve hours later, Thomas has been absolutely content and peaceful ever since. His lungs are so strong that he continues to breathe over the vent beautifully even while his pain is sufficiently controlled.