Day 58: Sleeping at Home





Duplicated from our CaringBridge site for permanent record here.

January 14, 2021, written by Mama


It is properly a Day 57 update that Mama slept in her own bed at home, but there was no way I was going to announce that ahead of time in case I chickened out! Chris came to the hospital on Wednesday night, we gave Thomas his nightly sponge bath together, got him tucked in, and then I told him I was going home to give some hugs and kisses to his siblings while Daddy stayed the night with him. Thomas nodded assent and wasn't upset at all . . . about which I had mixed feelings! 

I basically sneaked into the house at nearly ten at night and ultimately was gone by seven in the morning. The point of this visit was experimentally to see if I could sleep at home, not a social visit with the kiddos. I did have a couple pretty big, suffocating, room spinning panic attacks in the middle of the night and I was grateful that Chris kept the promise I extracted from him to send me many text updates overnight, even if they were to say "no updates, all is well."

One humorous moment was when the three-year-old woke up crying. I didn't want to scare him, so I walked into his room announcing, "It's Mama. Mama is here." After 56 prior nights of absence, he didn't even bat an eyelash but proceeded to tell me that his legs hurt. I scooped him and took him back to my bed where I rubbed his legs, talked to him a bit, and he went to sleep. He acted like I've been there tending to his night needs lo these two months! At least I got to enjoy some shock and delight when the seven-year-old arrived bedside around 3:00 a.m., expecting to be crawling into bed with Daddy only to find "MAMA!!!!!!" We had some pretty big smiles and snuggles before he fell asleep with his arm flung over me lest I disappear again.

In the morning, I got to enjoy actually delicious coffee in my own mug. This whole experience of constant changes has been very hard for me. Just to exemplify how much I am a creature of habit (some might say ossified), I have had this particular mug since my Dad gave it to me during my teenage years. I have drank out of it every morning for about 14 years. When one of my preschoolers broke this mug some years ago, I was so disappointed. My Dad hunted down the same exact mug produced two decades early now for sale on eBay and sent it to me, so I continue drinking out of Christmas Mug Version 2 every morning . . . except for the last 56 mornings when I've drank out of Styrofoam. I was very grateful to drink out of my proper mug this morning.

I was back at the hospital for shift change, which was my goal, and we enjoyed arranging for Thomas to have a phone call with his Pop-Pops: Look at his big smile!


I really don't have many medical updates to offer because Thomas's withdrawal symptoms are still significant enough that the PICU Attending declared that we would go an entire second day without weaning any medications from him. Essentially, during all of Thomas's waking hours, he is retching and needing suction to get the burning reflux out multiple times an hour, and his only respite is when he falls asleep. The team (and we parents) would love for that symptom to diminish before further medication weaning.

After a busy morning of Physical Therapy and playing with Mama (building Legos, coloring), Thomas was one tuckered boy.


Back at home, John (14) finally got to visit the fish store where he obtained driftwood, live plants, and a six-inch eel to add to his 40-gallon tank.


The children at home got to go "help socialize" the neighbor's puppy, a "chore" they like to help with multiple times weekly.


Come eight o'clock at night, I had the privilege of giving Thomas his nightly sponge bath myself, reading him Robert McCloskey, and praying my rosary next to him while he fell asleep.