The swing of 10 days at home

Storyline: Thinking in Autumn Colours 

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Although today, October 16, is not his best day it is now 10 days since Alex has been home. He has made a huge comeback from the almost lifeless and listless person I took from the hospital to somewhat functional and participating in life, making jokes and even plans for the future. “When we go to Nova Scotia next year…”

I record every small win. We know the road to recovery will be long with ups and downs, but we both are hopeful for the best result. At this stage he needs a lot of care and encouragement. Some times he has to be nudged a bit, sometimes he needs a validation that he can do it, and sometimes he just has to be left alone as is today. I’ve already covered my frustration with home care services during the first 3 days, when he almost didn’t exist, lapsed into deep sleep, and when I most needed help, guidance and training. Things with service improved ever slowly. But for this later.

Thursday, Oct. 7

Yesterday he reconnected with our house. He walked slowly around the living room, then sat in a chair at the back yard. It is still nice and warm outside, but he felt chilled. Today he wasn’t in any desire to walk around the back yard or sit in a chair. His head was foggy and he was sleeping most of the time.

Friday, Oct. 8

Absolutely gorgeous weather. First day out of the house. A very short walk, two houses down the road to the fire hydrant and back. I know it is a big effort. He remarks that his calves hurt. No wonder after being in a hospital bed for a month and all the rest he has been through.

After the dietician helped me with the dosage and the nurse helped set the food pump to a higher rate it was the first night, albeit after midnight, that he slept in our bed.

Saturday, Oct. 9 

First day with no pain killers. We actually used only the 1000mg of Tylenol and refrained from using the hydromorphone. A walk 4 houses down the road to the second fire hydrant and back.

Today we also saw our assigned nurse for the first time. She’ll order some supplies for us.

And we finally got to the feeding schedule of 2 cans 3 times a day. He seems to be tolerating it well. Yay! First full night in our bed. Good sleep.

Sunday, Oct. 10

A small win – a walk around the block, 1km.

Some setbacks. The headache returns and painkillers are back.

Monday, Oct. 11

A small win: No anti-nausea anymore. (He hasn’t been nauseous since Oct. 10!)

A big setback: Very low blood pressure, feeling dizzy and light headed. Doesn’t want to walk. Still, in the afternoon when I had the kids around the table on the deck for a small Thanksgiving dinner, he sat outside for a while sipping his chicken soup. His blood pressure was still very low in the evening after his feed. Earlier we had called the Oncology after hours number (Monday was a holiday – Canadian Thanksgiving) and they’d recommended he go to emergency if after the feeding things didn’t change. If we have to go, better be now that in the morning. Emergency department is usually full after a long weekend. And I really want him back for his 6am feed.

With arrhythmia and CLL, he is expedited to a private quarter (a small room with a bed and medical equipment). In an hour or so Dr. Champaign arrived. Nice fellow with great sense of humour.  He thinks it is dehydration. A nurse brings an IV and the first litre of hydration starts dripping. Meanwhile blood tests and an ECG are done and we have to wait for the results. The ECG reveals what we already know – he is in arrhythmia. He is sleeping in a bed that is small for me to lean on, so I just sit in a chair. It is after midnight. I hope to be home before 2am. I ask the nurse to help with finding out if the results of the blood work are ready. Eventually just before 2am the doctor tells us that the blood work results are good and we can go home. I find the nurse and ask her to disconnect him while the doctor is entering all the information. We are asleep at around 3am and I am up at 5am to prepare the drugs (crush and add water) and set up the food pump.

Tuesday, Oct 12

Surprisingly after a night in emergency he is quite active and feeling way better than me. But after all he slept most of the time there and I didn’t. Arrhythmia is still dragging him down but better than yesterday.

Wednesday, Oct 13

No Tylenol. It is exactly a week he’s been home and one can notice the difference. His eyes are sparking (eh, not always), his face looks better. I am still in the dark of what the roles of everyone visiting us is exactly. For how long will we have the services? But this is for another post. I sent and e-mail to Sonia, the hospital dietician (she was so kind to give me her business card), with all my questions.

Thursday, Oct 14

We had a good morning. Sunny and warm. Stuart & Jane stopped by with 3 bottles of RV antifreeze to help us winterize Doranya, our campervan that has been sitting in the driveway for a month and a half. Alex having some energy reassures them that we can do it ourselves and we sat well-distanced on the front porch and chatted instead. Nice to see people outside of hospital and care staff. Alex had his voice and talked for about 15-20 min, after which his voice got tired.

Sonia called to answer my questions and listen to my complains about CCAC’s (Ontario home care) lack of communications. Shortly after, I FINALLY got a call from the home care coordinator to explain their roles and responsibilities. Despite the politeness of all, after a month or so we will have to buy all the feeding equipment and supplies (the food is a prescription medication filled at our drug store, and as we are over 65, we only have to pay a small dispensing fee) and are in the wild on our own. Check the next post (3 teaspoons of chicken soup) for more.

After Alex’s noon feeding, we walked around the block and then drained Doranya’s fresh water tank and plumbing. I was delusional that I could handle the valves. My arthritic hands could not turn a single valve and there are quite a few. Winterizing with antifreeze will be for next week.

Friday, Oct. 15

The best day so far according to him. No painkillers and nausea drugs for some time now; trying to discard the laxatives. Will see. We had a productive day. Walked in the morning. A consultation with our family doctor. She says she’s been following his case. Alex’s unique case has made a buzz with the doctors and specialists around a few hospitals, she says. “Perhaps someone will write an article about my case and one day I’ll be famous”, he jokes. He will get a Covid booster shot and she recommends to keep the laxatives because he has limited fibre in his food.

Alex drove Doranya around the block in the afternoon. Then drained the heating system. All is ready for winterizing now. Still, the question of where will we store it during the winter stays. I’d like to order a snowplow service for the driveway. And I am running out of time.

Saturday, Oct. 16

A big setback. Headache is back. So is Tylenol. He slept most of the day. The Speech pathologist was here. She did her assessment and recommended some exercises. Limited sips of water and chicken soup are OK. Anything thicker than that is not – he just can’t swallow it.

We definitely hope the next 10 days are much better. Time will tell.