Gloria in Excelsis Deo: Day 125: A Day Spent in Pain

Duplicated on our CaringBridge site for permanent record here.

March 22, 2021, written by Mama

125 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 19 back in the Oncology ward.

The last 24 hours have been tough ones as Thomas experienced what we hoped is only the "setback of a pain problem" and not an actual complication. Time will tell.

When Chris spent Sunday with Thomas, he noticed an increasing sensitivity to touch. He could still accomplish Thomas's body care, but Thomas would protest at sometimes the mildest touches in perfectly normal spots on his body. It was enough that Chris mentioned it to me at "shift change."

I arrived Sunday at 7:00 p.m. by which point Thomas was already asleep. I noticed fairly soon that Thomas's monitor showed wonky numbers: oxygen in the low 90s (when his regular is 99-100%) and a respiration rate bumping up above 50 to try to compensate. Also, Thomas would wake and cry about his back hurting.

After the monitor alarmed about ten times (and I'm not sure why it blares in here but not out there, as I know the monitors are visible at the nurses' station), I called in the nurse to discuss. She messaged Surgery and the doctor came at midnight, needing to turn on lights full bright to remove the tape (causing screaming pain) and check if the epidural was still placed, which it was. Thomas's lungs sounded clear, but a chest x ray was ordered for the morning to check for pleural effusion.

The night followed with more wakings in pain, and I was so worried about the low oxygen that I only slept from 2:00 to 5:00 (with some wakings in between).

This morning, Chris joined me to sit with Thomas all day. Anesthesia did remove his epidural and the pain only grew worse. The chest x ray ruled out pleural effusion and his blood labs look good. Thomas did spike a fever, so numerous cultures had to be drawn. He also threw up bile voluminously in one episode, more than we've ever seen. The surgeons made him NPO again.

This wasn't a case of the epidural removing pain coverage so now Thomas could feel his incision pain. He has pain all over his body, but particularly his entire back. Just lifting a baby blanket off of him makes him cry. Rubbing his hand comfortingly. Doing body care makes him hurt so bad his body is shaking. He wants to lie completely flat (which isn't good for him). For stretches of this morning, the pain was so bad that his heart rate was hitting 200, his respiratory rate reaching 60, and his oxygen around 90%.

Before removing the epidural, he was given a bolus of narcotics through the epidural, and oxycodone immediately afterward, followed 30 minutes later by Dilaudid (10x more powerful than morphine), and then an hour following morphine itself, at which point Thomas at least calmed down enough to be manageable. He is going into the night on a pain regimen of Dilaudid and Toradol.

No one has solid answers. Everyone hopes this is a "pain problem." Because of Thomas's massive exposure to opioids and benzodiazepines, he requires much more of those drugs to cover pain even now. Where is the pain coming from? His incision? Did the epidural removal assault his back muscles and make them spasm? Is this referred pain from inner organ pain and gas retention?

The team has to be careful not to give too little narcotics because of his tolerance level. However, they also don't want to get him addicted again because it took Thomas about two and a half months to taper down and get off all (but one) of those drugs.

And why is his oxygen still lower-than-normal? Nobody is sure and the best hypothesis is that he has been lying still and flat for three days, breathing shallowly. What he needs to do is sit up vertically and start to move around as best he can, but he can't do that due to the pain. Meanwhile, we are assigned to start having him use his two breathing devices to expand his lungs each hour.

We pray that tonight is easier and that whatever is causing this pain dissipates . . . and soon.