Day 53: Quotations of the Day

Duplicated from our CaringBridge site for permanent record here.

January 9, 2021, written by Mama

Withdrawals are tough business. On Friday night at Thomas's first waking, I noticed a dramatic change in his persona that numerous of the staff here says is a known symptom of both delirium and withdrawals. I felt like Thomas was just gone. Normally when he wakes in the night, he starts crying until I settle him. At that first waking and the subsequent, I just heard his breathing change, so I sat up and looked at him. His eyes were open, but they seemed unseeing. Later I even asked him, "Can you see me?" He spoke nothing, he had a flat affect. His muscles and even his jaw were rigid. It was unnerving and eerie. This was Thomas's state at each of his night wakings and I was so relieved come morning that he was somewhat back with me. It was something in his eyes: as the sun rose, I could see Thomas seeing me.

Over the course of the day, he remained very quiet, though. His gagging cough also had progressed to actual retching many times and vomiting up material twice over 24 hours. 

Thomas's Great Auntie sent him little Epiphany gifts, which we opened and he touched.

Our big accomplishment of the day was getting the ceiling cleaned! Some many unknown weeks ago, one of the most neatnik nurses here was emptying Thomas's abdominal drains, which were nearly frank blood at that time. She had a blunt syringe full of his blood and she actually jerked her hand so that it sprayed straight upward, leaving an obvious spray on the ceiling tile and adjacent light. She was mortified, but it was not an easy clean-up, so there it has sat. 

Well, yesterday, Thomas noticed it. He would crane his neck to look up at it, then tell me, "Look!" before he began crying. Given how sedated he has been until this week, I truly cannot fathom that he knows what content it was, so I don't know why he was scared, but he sure was!

So, I requested for the nurse to call Maintenance and get this taken care of once and for all and it turns out that I should have just asked ages ago. The nicest lady from Maintenance showed up with a ladder and we moved Thomas's bed and IV pole to the other side of the room. She replaced a ceiling tile and bleached the light cover so all was pure as the driven snow. Thomas isn't nervous anymore!

I went home from 5:00 to 9:00 for a bit of a working visit. I served a dinner that a lovely lady made for us, we did regular night chores, then I rallied three children to clean up the garage with me--something that likely has not been done once in, say, 53 days. I showered at home, did my laundry, and did bedtime routine.

Daddy sent me this cute picture of Thomas after his evening bath time. He was "smiling" as big as possible within the last, emotionally withdrawn 24 hours.

Earlier in the day, Thomas's oncologist was able to stop by and see him. We talked about the big picture and goals for graduating from PICU to the Oncology floor and then In-Patient Rehab. The oncologist told us that Thomas has "been to h--- and back" and he would throw out a guess that Tom will not be discharged home for about another two months. It is good for us to have some kind of time span presented so we can let our minds become accustomed.

Quotations of the Day

A new feature is probably going to have to be "Quotations of the Day"! This morning, Thomas had continuing intermittent fevers, so I removed his light blanket to try to cool him off environmentally. After not having spoken for at least 12 hours, he said, "I need my blanket!" I explained to him that he had a fever and I needed to let the hotness blow away, to which he protested, "But I need my privacy!" and promptly burst into hot tears.

Believe me, the boy got his blankie back.

Then in the evening, Chris left him with one of the nurses Thomas knows best for 10 minutes in order to meet me in the roundabout. I dashed upstairs to learn that Nurse J--- had been giving Thomas his sips of water off the green sponge when he paused to point across the room to a Styrofoam cup and say, "Would you go in the kitchen and get a cup like that?" After the nurse picked her jaw up off the floor, she asked what kind of water he wanted and he told her cold, so the kid got to have sponge-sips of ice water going forward!