To remember what this season was like, here’s a typical day out of my week during treatment. This was yesterday (Thursday, 3/21). I’m currently living with Mom in her Issaquah apartment; Greg is living in our home in Des Moines, and the kids are going back and forth between us. I have them Wed-Sat pm, and he has them the rest of the time. All feedings, meds and liquids are via PEG tube.

Wake up at 7:30am. Hear Mom coughing and suctioning in the night, but she didn’t ring for me, so I got to stay in bed all night. Help the kids with breakfast. Prepare Mom’s 8am feeding & meds. 8a-8:20 feeding. Apply facial creams to her radiation site to help heal the burning. Teach Jonathan how to handwash breakfast dishes. 9am – eat breakfast. Suction Mom’s trach. Dump out water & secretions from machine and wash canister. Get dressed. 9:30a – prepare to go for a walk, but nutritionist calls to talk about possible change to her diet. Talk with nutritionist for 30 minutes, find out why insurance won’t cover a healthier, natural formula. Figure out next steps. 10a – prepare 10am meds and water and feed Mom. Write down that you need to schedule her follow-up with Dr. Kim. Text Keith to see when he’s coming over for trach care today. Read Titus a few stories. Prepare the kids for their time while I’m gone at radiation and hydration. Suction Mom again. 11am – find out there is more paperwork to fax to long-term care insurance. Fill it out. Try to figure out the scanner. Mom helps. Scan the documents and fax them through. Faxes fail. Resend. Fail again. Resend once more. Faxes go through. Call the home care company you’re trying to work with. Talk with the care coordinator and schedule a few appointments for next week. Good news: there is a caregiver who can be delegated to handle trach, peg and meds! Will need to onboard her next week. Suction Mom again. Lots of secretions. Help Jonathan and Caleb make copies for math. 11:45a – prepare the 12pm feeding and pack the suction equipment, creams, gloves, water, cups, syringes, cloths, meds for 12:30 departure. Pack a few snacks and water for me. Running out of time for a shower. Push it to tomorrow.

12pm – Feed and meds for Mom. Last instructions for kids. Keith comes, picks up the trach supplies while we gather everything else. 12:35p – Leave for the hospital. Walk across the street with Mom and Keith. Check in for 1pm hydration appointment. Once settled, I ask Keith if he can hang with Mom while I go for a walk. He covers me for 45 minutes – I walk around the hospital and get some cardio and fresh air. Come back, find Keith and Mom finished with trach care and coloring. I join them; 2 minutes later Mom gets another coughing fit, needs suction, fanning, peppermint oil to help her calm down. Return to coloring. 3pm – Keith leaves.

3:15pm – done with hydration. Pack up and walk directly over to radiation. Mom changes, suctions, and gets called back quickly. I wait. Texting Grace’s ride to ballet and Grace to give her instructions on where to go if I’m not back before she leaves. 10 minutes later, Mom comes back and is done. We pack up, say goodbye to the front desk team, and walk back to the apartment. Home by 4pm. Just miss Grace, but she gets picked up safely for ballet.

4pm – say hello to kids, prepare 4pm meds and feeding. Feed and meds for Mom. Radiation cream round 2. 4:45, figure out shopping list and dinner. 5pm – Greg comes and picks up Jonathan for baseball practice. I suction Mom, take Caleb and Titus to grocery store for dinner. I get there, realize I left my wallet at home, and come back. Scrounge for dinner fairly successfully, put shopping off until tomorrow. 5:45pm – feed Mom. Take boys down to pool, let them swim for an hour or so. 7:30pm – come back upstairs, get boys ready for bed, read stories. Put them to bed. 8:30pm – meds for Mom. 9pm – do dishes. 9:30p – put on radiation cream once more. Prepare 10pm meds. 10pm – meds for Mom. Suction. Prepare syringes for the next day. Write down the next day’s schedule. 10:30pm – get ready for bed. 11pm – go to bed.

4am Friday – get called by Mom because she’s choking on mucus. More suction. Head back to bed. Keep hearing her coughing, but no calling for me. On and off sleep until I wake up at 8:30, realize I’m 30 minutes late for the first feeding of the day. Oh well. Adjust schedule and move on.

This is a pretty average day. No day is the same. There have been worse; there have been better. The highlights were coloring with Keith and Mom, and taking a walk. Low lights are the choking episodes and hearing Mom struggle to sleep during those coughing fits, knowing I can’t help.

Now it’s 10pm Friday and I need to prepare her final meds. Until next time.