Day 126: Continuing Pain

Duplicated on our CaringBridge site for permanent record here.

March 23, 2021, written by Mama

126 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 20 back in the Oncology ward.

I have little to report except for Thomas's overnight and day being spent mostly uncomfortable or in a lot of pain.

One improvement for which I am grateful is that Thomas's pain all over seems to have localized down to his back. All of the teams concur in not knowing what is going on. We wonder if some typical and moderate pain response to the epidural was magnified many times over in Thomas, either because of his nerves or his exposure to so many narcotics or maybe even going through withdrawals to Fentanyl after being exposed to it for only three days again. Nerves are funny, funny things.

Now I can touch other parts of Thomas without him screaming, but his lower back hurts tremendously, so he won't move.

Another gift for which I am grateful is that Thomas experienced three hours of wonderful respite today from about 5:30 a.m. to 8:30. His pain was controlled and suddenly he could move. I could do his body care without him weeping. He easily rolled himself side to side. He even sat up once. However, the rest of the day was one mostly of pain.

He is also experiencing a lot of GI distress that is typical after abdominal surgery. He had an abdominal X ray to make sure nothing was awry and it isn't. The only solution is time.

In the meanwhile, I simply tried to be of comfort to Thomas in my limited ability. I read him stories and sat next to his bed while we watched TV shows. I made sticker art with him. I bicycled his legs, held warm packs on his belly, and rubbed his hair. I arranged a video call with his siblings and, while Thomas felt too bad to talk, he liked quietly watching me and his siblings talk together. For a cumulative many hours, he simply wanted me to hold his hand tightly while he moaned.

I doubt I'm ever profound, but I try to be thoughtful in my writing. Yet I keep falling asleep at my computer, even though it is only 7:30 in the evening. Off to bed is all I can do.