Day 127: Pain Improving Bit by Bit

Duplicated on our CaringBridge site for permanent record here.

March 24, 2021, written by Mama

127 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 21 back in the Oncology ward.

In the longer arc of Sunday to Wednesday, Thomas's pain is improving, there is no doubt. However, in the snapshot moments, like during a night of many wakings for pain, or when just doing his body care makes him weep, I feel like we are getting nowhere. This morning called for two cups of coffee right away.

On the bright side, after a rough night, Thomas woke and wanted to launch into his artwork right away, which included sitting up, something he could not possibly have done on Monday and only started to do on Tuesday.

Then he requested repeatedly to get out of his bed and into his wheelchair. It was hard for me to let him try because you can just imagine how I felt when only a couple of hours earlier, I couldn't roll him over a few inches without great pain! However, with the Physical Therapist in the room as a second pair of hands, just in case I needed help, we tried it and Thomas was quite pleased! He wanted to work on his stickers, which is serious business when you're five.

He lasted thirty minutes in the chair before declaring, "Mama, sitting up has sucked all the energy out of me. I need to lie down."

What good timing, as his Palliative Care nurse, Miss L----, walked in bearing an ocean-themed blanket she had designed and sewed just for Thomas! I'm telling you, our little boy seems to work his way into the hearts of a lot of the staff.

At one point this morning, after discussing Easter upcoming with his Physical Therapist, Thomas turned to me and asked, "How will I do the Easter egg hunt with my brothers and sisters since I can't move?"

I've been through so much these last four months that nothing much makes me cry these days (or I wouldn't stop crying), but that question did. I couldn't answer him. My boy thinks I know everything--all the answers!--but this time I had to go busy myself in a corner of the room and cry.

I'm going to solve this problem for our boy.

Medical Updates

There are a lot of balls in the air right now. Today we had detailed consultations with Anesthesia, Infectious Diseases, Palliative Care, and Surgery (Dr. B--- in person!). Everyone is working together to try to solve his pain and get his gastrointestinal system working well.

I don't think we are ever going to know exactly what caused this pain crisis. The leading idea is that the epidural (which had to be inserted twice) upset Thomas's muscles and sent them into spasms that have lasted for days, and possibly included nerve inflammation. The Toradol which worked for only three hours at a stretch on Monday was today working four or five hours before running out (and it can't be repeated closer than every six hours). We are going to add into the mix a light muscle relaxant and a small, local lidocaine patch. 

For nutrition, today Thomas was cleared for solid foods. Due to a merely administrative error, his J tube feedings will be beginning tomorrow (later than anticipated).

Courage

I know that children earn their Beads of Courage whether they are courageous or not, but Thomas is courageous so many times a day. Or maybe it is better to characterize him as being at peace. Today he had his port needle changed, as it is once a week, and, as usual, he chatted his way calmly through the procedure. No matter what test, imaging, IV placement, or blood draw we've thrown at him, he has never so much as thrown one tantrum in these four months in the hospital, or his nine months of treatment.

Thomas went into his last surgery calmly, as he has for all the non-emergent surgeries for which he's been awake ahead of time. Today he was asking me how and when his port would one day be removed. I said when Thomas doesn't need it anymore, we will come back to the hospital for "a little procedure," and he said immediately, "Oh, you mean a surgery. Okay, that's fine!" I thought to myself that I had underestimated him again and he really doesn't need much baby talk from us.

Today the Child Life Therapist came by, having fulfilled my request of catching up on Thomas's Beads of Courage for the last two months. Since they far exceed what a string can hold, for now we will be displaying them at home in a pretty Mason jar. I began surfing online for artistic ideas for how to make a permanent and meaningful display of his Beads. I was overcome with choking tears at seeing the ideas and realized I had to put that pursuit away for now. My goal is that maybe by next fall, for his one-year anniversary of this journey, I can create a beautiful way to display his Beads.

Not his whole cancer journey: only the Beads for his hospital stay

 

Chris is getting to spend the night with his dear boy tonight. It is hard on him to have to juggle more of the Outside World responsibilities than I do. He would love to visit Thomas daily. Even on a day when I can't get a smile out of Thomas all day, he lights up big when he sees his Daddy walk in the door.