Day 118: Bowel Imaging Needed

Duplicated on our CaringBridge site for permanent record here.

March 15, 2021, written by Mama

118 days in the hospital: 63 in PICU, 28 in the Oncology ward, 15 at In-Patient Rehab, and 12 back in the Oncology ward.

Follow-Up

Indeed, investigation revealed that the staff yesterday skipped an entire day of tapering dose of Thomas's Clonidine, resulting in his Sunday withdrawals off the charts. On Friday, Palliative Care had written out his weaning schedule for me and asked me to watch like a hawk over the weekend. I was there Saturday morning when the nurse put on the Clonidine patch, so that was Day 1 of a four-day taper. I was back 24 hours later and asked the new nurse what dose of oral Clonidine Thomas was getting for his taper. She told me the dose and I said that was tomorrow's dosing schedule, that she was skipping a day. She looked in the chart and the orders indicated the dose she was giving. I showed her the schedule written out for me. She showed me the orders, and I let myself be succumb to the idea that I was just an ignorant mother who can't know anything. Palliative Care doesn't work on weekends, so I couldn't call them in for a consult.

Then Thomas experienced terrible withdrawals all day until I put my foot down and asked for rescue meds. By then, the Surgeon on night shift recognized he was having withdrawals and bumped Thomas back up to his regular dose of Clonidine until Palliative Care could be consulted the next day (today).

When they gave him his dose at 8:20 p.m. Thomas had been lying in bed moaning nonstop for an hour and a half. He didn't moan once more or show any more withdrawal symptoms after that.

The mistake was figured out, that Thomas's dose was dropped  from 300 mcg total per day to 75 mcg total per day in one step, which, if you know anything about addictive pharmaceuticals, was CRAZY.

My lessons learned: Don't allow them to start weaning anything on a weekend when staffing is short. Don't let them bowl me over when I have such strong misgivings.

Medical Updates

We had been playing on the floor early this morning when Dr. B---- walked in with four of his team. Most days the mood is jovial, but not today. Thomas had recently been crying, so I had pulled him onto my lap for snuggles, where he cried himself to sleep. Therefore, I was stuck on the ground holding my beautiful sleeping boy while Dr. B---- sat down low close to me and we had a twenty-minute long, serious talk while the rest of the team stood at attention silently.

Thomas's daily X ray shows no further decrease in the pneumatosis. It does show some other concerning information. The surgeon wants to do some additional imaging of Thomas's bowels, but he wants the pneumatosis to reduce or disappear first in order for the scans to be safe(r). There is much science to explain that we are going to hold close to the chest right now. The outcome of those scans is the difference between Thomas going home and Thomas needing new surgery. 

Meanwhile, Thomas must remain NPO.

He is very sad and subdued, except when he is in tears.

Out and About

We approached our surgeon last week about how consistently quiet and listless Thomas is now behaving. We are now allowed to take him off the ward, around the hospital, and out to the patio. We hope that getting out of these four walls will help a little, although he needs encouragement because he has sat in this bed so long that now he feels safe only in the bed. He gets very nervous if I take him outside.

Today I made us sit outside on the patio despite his complaints. I played I Spy by myself, I talked about various construction and vehicles going by (like Winnie the Pooh playing I See, I Say), and finally I played silly, humorous children's songs on my phone via YouTube, just hoping to catch Thomas's attention.

Daily Artwork

Moose

Tree in Front of Mountain and Waterfall

Van

Parental Spirits

Fr. Peek was a heroic priest of the Atlanta Archdiocese who died of cancer complications (worth reading up on, if you didn't know him), and his slogan was "Accept your mission, complete your mission." He suffered a horrific death with sores over 70% of his body and basically starving so he looked like a skeleton. I don't want to speak for my husband, so I'll say that I've been pondering what my God-given mission is right now. Is my mission to save Thomas's life? No, I can't necessarily achieve that: I'm just a mom. Maybe it is more appropriate to think that my mission is to accompany Thomas and to help him carry his cross, no matter the outcome. Thomas has no choice: he can't get up and walk away from this hospital; all he can do is lie in this bed, passively accepting medical decisions. I have to make a choice every day, every minute to take that next step. When our surgeon walks in and I excitedly think Thomas might be discharged by the end of the week, but our surgeon explains that he suspects Thomas needs another major surgery, and the world starts to close in black around me till I can't breathe: I have to make a choice to accept my mission and complete my mission.

It seems ridiculous to consider doing anything other than my duty, but I can assure you that many children of all ages (newborns to teenagers) sit in these hospital rooms without parents much of the time. I've been made aware of both deadbeat dad and deadbeat mom situations where the other parent is doing 100% of the duty here. Recently I overheard a teenager with cancer begging her parents not to leave her alone "for all day again!" and I see that teen sit in the door to the hospital room, just hoping to connect with passersby. I hear angry parental yelling from other rooms. I've seen security needing to be called to the ward. I've known parents who leave the room during their children's painful procedures because it is too hard to watch. Most recently I had a fellow mother tell me something quite insulting about her child with cancer. Parents in these circumstances struggle badly to do their duties and I am well aware that many of them don't have the emotional or social resources to have prepared them to be here or to support them now. 

This is so hard for parents. I want to run away, I want to drown my sorrows, I want to live someone else's happy, carefree life away from this emotional pain: but I continue to try with my leaden feet to accept my mission, complete my mission. To me, that means physically being with Thomas, and staying virtually all the time so I can advocate for him effectively, holding him while he cries, being as cheerful as possible regardless of my actual emotions so he is calm, and my doing activity after activity with him during all his waking hours, then getting up overnight as many times as he needs to clean and change him.

All of our community who is supporting our family pragmatically with meals, with prayer, and with loving gestures to cheer us up are playing a tremendous part in giving me and us strength to keep going.

Accept my mission, complete my mission. Padre Pio called the Rosary his weapon, so I will go pray mine now.

Miscellaneous Moments

Chris sent me this photo of eight-year-old Joseph stepping into the Big Brother Role, helping three-year-old David pray the rosary. I miss home so badly.