Sunday, October 16, 2011

A reminder of the reality

The Dawsons left on Thursday 13th October. On Friday 14th, I visited Pam at the Base Hospital, fully expecting it to be quite a few days before she’d be ready to come home – but found the Registrar with her and soon after he left, Pam announced the he said she could come home ‘now’.

She didn’t have to say it twice, but it took a further 3 hours before I got her into the car. Apart from me having to go back home to get the electric wheelchair, there were pharmaceuticals to collect, Dietician instructions in regard of Pam’s new overnight feeding regime and awaiting a lifter to get Pam from her hospital bed into the wheelchair.

I got Pam home at about 12:30pm and put her to bed straight away. The new 2-hourly hydration flushes until 7pm proved to be ‘surprising’ - I thought I was going to get it easy given the daily PEG feeds had been moved to an overnight feed, but soon realised something still happened every 2 hours, regardless.

At 9pm I gave Pam her 4-pack, 948ml, 12-hour PEG feed – the pump being set to deliver 80ml/hr. When I eventually got to bed myself, I thought “I can sleep in! Nothing to do until 9am.”

However, at 4:20am, Pam woke me to tell me she was ‘full’. OK, I took a little time to soak this in, but soon realised that it didn’t make sense. The slow delivery rate was prescribed to allow the stomach to continually shift the trickle to the duodenum, never letting it ‘fill’ and then becoming a regurgitation issue. How could Pam be ‘full’?

I switched the pump off and got back into bed – but I couldn’t sleep. My mind was being torn between Pam’s desires for a feeding break and the instructions of the Dietician, ie that Pam should get the full 12 hours worth.

And so after giving Pam a 30 minute break, I then switched the pump back on. Pam seemed to be game enough and didn’t complain (but she never complains). About an hour later, Pam woke me to say that she felt ‘a bit sick’. I got up and stopped the pump straight away, but as I watched Pam I could see her regurgitating again.

Soon the pathetic ineffectual coughing started up and I thought “Oh no! Here we go again.” I monitored her temperature and in spite of it not rising, I was still very worried that pneumonia would not be very far away. Pam’s cough was disarming and I eventually rang TRIO Support to cancel today’s respite cover and then rang ‘000’ for an ambulance. While they were coming I decided to change Pam’s colostomy which was in need of attention. As I unclipped the bag from its base-plate, watery diarrhoea spilled a bit further than I anticipated. “This is turning into a bloody good day”, I sarcastically said to myself. When the ambulance arrived and heard my story, they seemed happy for my pre-emptive concern and took Pam to the ED for an x-ray et al.

Cutting a long story short, Pam’s lungs proved to be relatively clear and subsequent blood tests showed no problems. Another long wait for a lifter and Pam was happily home again at 12 midday. I rang TRIO and got cover from 1pm to 3pm, then I showered Pam and washed her hair (which hadn’t happened since 1st October) and set her up in the lounge in readiness for the TRIO respite carer. The delay caused by the hospital visit resulted in her hydration flush regime being put back two hours, and so I prepared her 11 o’clock medicated flush and attempted to deliver it to Pam before the carer arrived. But alas, with all the rush of the early morning, I’d forgotten to post-flush the PEG tube after disconnecting the pump, and I found it to be thoroughly blocked!

It eventually took a long skewer carefully pushed down the tube to open a flow path; but in the mean time, I had squirted half her medication all over her cover towel by pushing too hard on the syringe against the blockage – prior to when I thought of the skewer.

I was really glad to get down to the Working Man’s Club for a beer with some mates and then a blow of my euphonium at the bandroom prior to my return home at 3pm. If anyone tries to tell you that respite leave doesn’t do you any good, have ‘em talk to me!

BTW Since writing that second last paragraph, it's been pointed out to me that Coca Cola is more effective (and safer) than any skewer - and so I shall keep a can thereof in the fridge, just in case the 'good' advice really is.

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