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.

Welcome reminiscence

Pam was coming along nicely, gradually gaining weight and not getting too many nausea bouts – as far as I could tell, although she did manage to get some regurgitation into her trachea (wind-pipe) on one occasion shortly after she came home, so I hired a nebuliser from our local Flanagan & Poole Pharmacy and gave Pam a single treatment which almost immediately solved her problem.

Time went by; the days were ones of contentment for Pam and baby Ellie visits were an added joy for my Pamela Joy. The world could keep turning, I thought.

On Wednesday 5th of October, TRIO Support carer Andria turned up as usual at 10am and I took off into town, as per usual. I had been gone but a couple of minutes when Andria rang my mobile to tell me that Pam had aspirated yet again, but on speaking to Pam, she seemed confident it was simply another tracheal deposit and so I said I’ll hire the nebuliser again and bring it back later – will that be OK? Pam said she wasn’t coughing much and there was no hurry.

And so it was – I got home at 1:30pm, thanked Andria, put Pam back to bed and applied the nebuliser as before. Once again, just one dose sufficed and Pam reckoned she felt much better. I contemplated purchasing a nebuliser and Case Manager Peta suggested one might possibly be funded for me if I could get her a letter to that effect from Dr Bob, our GP. So I made an appointment for Friday 7th at 2:30pm, completely unaware of what was about to happen.

As the afternoon wore on and although it was rather cool, Pam eventually called for me to turn on her ceiling fan – as she was feeling hot. Later she called me to help her lift and bend her right arm (that’s her good arm) so she could scratch her itchy nose. Well, when I got her hand near her nose, I had to even straighten her finger so that she could scratch herself. I was alarmed! Apart from it being easier for me to scratch Pam’s nose myself, I was astonished as to where had her strength gone?

I didn’t waste any more time. I rang the hospital much to Pam’s chagrin and described her apparent discomfort with the ‘heat’ of the cool bedroom and her sudden utter weakness. I was advised to ring 000 straight away and call for an ambulance. Bugger – here we go again!

Pam was found to have an elevated temperature and was taken to the Emergency Dept. Cutting a long story short, she finished up in Ward 2, Room 5 with aspiration pneumonia in both lungs. As it turned out, it didn’t seem to be too severe, but it would take some time to repair. I am writing this bit on Thursday, 13th October and Pam’s just entered her second week, but there’s hope she’ll be discharged soon. By the way, I forgot to go to see the doctor (!)

In the mean time, a strange thing has happened…

Several weeks ago, a friend forwarded me an email from one Ross Dawson – a man I’d not seen for 40 years and with whom I had graduated as a Mechanical Engineer. Evidently, Ross decided to attempt to contact me as a direct consequence of him finding this blog, using links to interest groups on my profile. I was ‘over the moon’ at the prospect of renewing that old friendship. Ross, like me turned out to be a Geelong FC supporter and many happy emails, phone-calls and SMSs subsequently ensued, consequenting with Ross and his lovely wife Stella deciding to come from their Melbourne home to visit us here in Mildura. Indeed, that decision was made prior to the 5th and so it was anticipated that they would be visiting Pam & I together here at home. Sadly, that wasn’t to be the case.

Ross knew Pam from the early days, when I first met and married her and he was very keen to see us both – as I was to see him once again. That he was bringing his wife, who was also very keen to meet us, was a huge plus and the impost of hospital visits paled into insignificance.

The two welcome guests arrived Monday evening, 10th October, and stayed in the nearby Aquarius Apartments. Ross and Stella both were delightful in how they showed a genuine interest and empathy in Pam's and my situation.

I remembered a video I made just a year after we moved into this unit – around about 1996. In it Pam is seen walking around with the aid of her walking stick and describing where we live after first saying “Welcome to our little house” using a voice quality I’d not heard for several years. (Pam’s stroke affected Pam’s voice subtly.) I hadn’t seen this DVD for several years and it brought a tear or two to my eyes.

During a visit to see Pam, we were fortunate to have Jeni and baby Ellie also visit while we were there, so Ross and Stella met them both. Our other daughter Sharon rang my mobile while we were there and so Ross got to speak to her as well. Ross took this picture during that visit...

Just yesterday I remembered the two books Pam and I wrote about each of our early lives. They are each one ‘generation’ of us, meaning they contain our life stories from our earliest memories to when we reckon our own girls can start to remember their childhoods. We had the books properly bound and we had had 4 copied of each produced (at around $100 each). One set is for Sharon, another for Jeni, one for ourselves and one to lend out to interested persons. We’ve met no-one more interested than the Dawsons.

While they were here, Stella took a shine to my rather unshiny motorbike. In spite of it being somewhat in need of a 'lick and a promise' (as the old saying goes), she got me to wheel it into the sunshine so I could take this picture of the lovely Stella...

Stella could have been pillion with me if Ross and her had another day or so to stay. In the Mildura district, Curatin and Coclin Avenues to Red Cliffs can be a bit of an eye-opener for a pillion. Ah, perhaps next time - and I'll get the dust off the bike especially for that trip.

Ross in particular knew just what to say so sooth us all – even daughter Jeni who is going through the ‘delights’ of early motherhood with baby Ellie who seems to have developed several fairly typical 9-week old baby issues. Sadly, they (Ross and Stella) left for home just this morning and I miss them already.

It was a visit from the way, way past. At least they can read our stories – mine mentions Ross in several spots throughout and time will tell if that pleases him – but I think it will. The sting of their departure is tempered by their promised return in around three months. I can hardly wait.

Here's a pictures of us two old mates