Winter Wishing

Tomorrow, it will be a fortnight since the Winter Solstice but we’re still about a week and a half until the middle of winter. According to my calendar, it is Tuesday 5th July and at the moment it is 10:17am (in spite of what the BlogSpot date-stamp above the title says it is).

Winter is a special time for us; it’s a time when panic could set in if I let it. It was two winters ago that Pam caught a cold and finished up with a stroke and nearly dying of pneumonia as a direct result. Last winter she fortunately suffered no winter-ills and this winter we are being very careful to protect her from such. Nevertheless, Pam throws caution to the wind once per week and still gets Therese (a TRIO Carer) to take her in her wheelchair to the Centro Shopping Centre for the groceries etc. It’s Pam’s only time out and if I wasn’t such a skeptic, I’d be keeping my fingers well and truly crossed each time.

It’s curious how the daily routine has evolved – here’s a brief rundown…

Pam’s four daily PEG feeds are scheduled for (approximately) 7am, 11am, 3pm and 7pm. Each has a pre and post flush with 30ml of water, however the pre-flush now contains an anti-nausea medication and is delivered 15 – 20 minutes prior to every PEG feed.

I reckon I must look really funny, dashing about in the freezing winter kitchen at 6:45am in my undies. (The air conditioner is still set to come on at 7am, but I’ll probably change that before too much longer.) There is already one pre-crushed anti-nausia tablet in the mortar, having been put there and so prepared as I was heading for bed the previous night, so I turn on the hot water and wait while it quickly drains its cold to (disabled tempered) hot, then I collect 30ml of that in a syringe and dissolve the powder whilst it’s still in the mortar. It’s then just a matter of drawing it all back into the syringe, drying out the mortar and going back and injecting it into Pam’s PEG tube back in the bedroom. I take the syringe back to the kitchen and then return to bed to warm up. In all, that operation takes only 2 minutes.

I’m out again at 7:07 to load the feed apparatus with Isosource liquid food in preparation for Pam's first feed. This liquid takes a couple of minutes to flow through to prime the feed tube, so while that's happening I go and start the washing machine to wash my yesterday's clothes and then return to close the flow of the feeding apparatus and take it into Pam.

This stuff takes about 40 minutes to deliver so while that's on the go, I do the three S's in the bathroom (including shower and shave), clean my teeth, apply underarm gooly, replace used towels etc, weigh myself and get back into bed until the PEG food has just 40-50ml left therein around 30 minutes thereafter.

When sufficiently drained (at about 7:55) I get up yet again, unhook the PEG feed kit (from the frame) and take it to the fridge in the kitchen, dress myself from the drying rack whilst there in the kitchen and go back to tend to Pam's 'getting up' routine - which is just about a book in itself. (...and having just written that phrase, it occurred to me that it's already been done - well maybe not quite a book, but it's 8 or so pages and it sits on the kitchen table so that others who come to care for Pam while I'm away have some idea of what she's used to. The details of daily routines and nighttime tasks are also described therein, by the way.)

Such is the morning feed routine – I get up three times! At the end of it all, Pam finishes up washed, toileted, fed and dressed, sitting happily in the lounge watching telly. Here’s a picture of how she was this morning.
















Pam also has four 150ml hydration flushes scheduled for 9am, 1pm, 5pm and 9pm. The first two and the final one of these are also medicated. You don’t have to be Einstein to realise that this entire daily (every day) routine has twelve distinct daily phases. I’m 62 and occasionally get confused, but Pam’s a tolerant lady and takes my mistakes in her stride (if only she could ‘stride’).

We’ll both be happier when winter turns to spring and we are wishing and hoping that no winter-ills come Pam’s way. If I get crook, I can possibly take up residence in a TRIO house until I’m well again so Pam can't catch what I've got. In the meantime, TRIO Support staff give Pam 24hr care. However if Pam gets crook…

Well, if she does, I dare say I'll let you know.

A Backhanded Holiday (with a sting at the end)

This is not meant to be a negative-sounding title, but is in fact just what it says it is.

You may have gathered from previous postings on this blog that I play in a brass band. Well it so happens that over the Easter weekend, I’m supposed to be off with the band to compete in the National Titles being held in Adelaide. The time away is from early pm Thursday 21st April and returning late pm on Sunday 24th.

Under normal circumstances Pam would need 24 hour care and this would be no trouble for TRIO Support to organise on our behalf. However, it would significantly impact on the allocated hours I have remaining for this year and so to alleviate that, it was suggested that Pam might like to take ‘Respite Leave’ in an MS-specific venue of which there were two offered – one in Melbourne and the other in Ocean Grove. Pam embraced this idea and the thought of the beach appealed to her and so it was decided to book her into Karingal Ocean Grove House starting Monday 18th April and concluding a fortnight later on Sunday 1st May. This respite centre idea saves massively on my remaining allocated respite hours (compared with 24 hour care at home) and gives Pam an unexpected holiday. This was all decided months ago.

An even bigger surprise came when I was told that Pam would be taken and returned by Air Ambulance at no cost at all to us. It just required the booking by our GP, Dr Meyer – and that only needed to be done a couple of days before the 18th, furthermore. I thought all my Christmases had come at once – even though I still had to be involved with my car to carry Pam’s wheelchair, luggage, medication and foodstuffs to and from Ocean Grove.

Pam’s mother and sister are arranging to stay in an Ocean Grove apartment for a few days and Pam and her mother will spend time together – for sadly, possibly the last time. Both Pam and her mother have serious medical and/or age-related issues which, over time, make extensive travel closer to impossible and which bring death inevitably closer.

Enough of that morbidity! Pam is so looking forward to this holiday, (a backhanded one if ever there was) and strangely, I’m even looking forward to the two car trips to boot! I plan to stay in Corio with my sister-in-law Dorothy and even get to visit my brother Ted, where he now lives with dementia at Grace McKellar House.

I’m writing this particular post on Sunday 10th April (by the way) so there’s just over a week to go. A few days ago I casually asked the doctor’s receptionist if she could ask him to make up a “Drug Chart” for the respite centre and perhaps to make the Air Ambulance booking if it was not too soon. As it turned out, I learnt from her (Tanya) that Dr. Meyer was to be away all next week (!) (Just as well I rang when I did.)

I was soon contacted by Tanya and she explained that the Air Ambulance people had put Pam’s flight-needs on the lowest of priorities because she wasn’t a medical emergency being taken to hospital. Therefore it couldn’t be known exactly when she would be picked up (by ambulance) and taken to Mildura Airport. It might be any time Monday and conceivably as late as Tuesday or even Wednesday.

I had to take this news on the chin – beggars can’t be choosers! Furthermore, I completely understood and agreed that this is how it had to be. But it blew out the water my hopes of getting away 3 or 4 hours before Pam was to be picked up (while being cared for in the mean time by a Trio Support Carer) in order to allow me to arrive at Ocean Grove around about the same time as Pam. If I couldn’t know when she was to be picked up, how could I ever know when to so leave? The more I thought about this, the more difficulties I could see: If they couldn’t pick her up until Wednesday lunch time, it would be too late for me to drive down, speak to the staff about Pam’s needs, satisfy myself that she was happily settled and then return home in time to leave with the band for Adelaide – and so I’d have to cancel it.

Furthermore, the return pickup was even more problematic: Given the low priority, I would have to rebook her departure to Friday 29th or even as early as Thursday 28th to ensure her being picked up by her discharge time on Sunday – and that would mean that I would have to get back there (to Ocean Grove) well before I had originally thought necessary – so I rang the Air Ambulance folk.

In regard of the return trip I was told that the Air Ambulance doesn’t operate at weekends for non-emergencies. Oh no! I thought all these arrangements had just about been set in stone – and now the stones were crumbling. Well then, what to do? I tentatively booked Pam’s pickup to be Friday 29th being fully cognisant and fearful that delays might mean an actual pickup on the following Monday. I will have to contact Karingal Ocean Grove House as a matter of urgency tomorrow to ascertain this possibility. (Indeed, if it is possible, I‘ll rebook the ambulance pickup to Monday 2nd May – I never let a chance go by!) Keep smiling; I’m trying to!

Well here I am back again. It's Saturday 16th April, just two days before Pam's potential departure.

Since I last wrote; the very day after had me ringing Karingal to see if it was possible for Pam to stay over on Monday 2nd May. That was tentatively confirmed and so I then rang Pam's Case Manager, Peta Webber, to see if that would be OK. Peta eventually got back to me (after her ringing MS Australia to check for funding) with confirmation of that and so I re-rang Karingal to confirm the booking. I also rang the Air Ambulance people to re-book Pam's departure from Friday 29th April to Monday 2nd May. (Lots of phone calls brought about by a single erroneous Sunday departure booking, but I'm not complaining.) I started to wonder about funding, who was funding the Air Ambulance (and associated road ambulances) and was the $30 being charged per day for accommodation anything like the real cost?

Those questions still remain somewhat unanswered to me, but what I quickly began to notice was the willingness of cooperation being shown by everyone concerned. The Air Ambulance folk told me to phone them the night before the trip to be told when Pam would be likely to be picked up. Excellent! Now I had a chance of getting away – of course that will all depend on how early they come, but if it turns out to be around mid-day, TRIO can be involved and I can get away earlier. So I find out tomorrow night and then tell TRIO straight away.

I set about typing up a list of things to pack in readiness for Pam’s trip. I knew that if I didn’t, I would almost certainly forget heaps and over a distance like this, to forget even one thing could be disastrous. So I typed away on my PC and quickly the list grew surprisingly big. It needed tweaking over the next day or two but finished up with six categories. Here’s a list…

1. Toiletries 29 entries
2. Food / Delivery 6 entries
3. Medicines 9 entries
4. Clothes 10 entries
5. Utilities 6 entries
6. Transport 6 entries

I should add that many of the ‘entries’ in the above list are about groups of things. For example, one of the ‘Medicines’ entries is “Current daily medicines”.

On Wednesday I took Dr Meyer’s drug chart together with all of Pam’s daily medications to Brooke at our Lime Ave Chemmart Pharmacy to have them packed into Webster (blister) Packs – this is a requirement of the respite house (Karingal). Well, Brooke is the epitome of helpfulness, but she said that because of some issues with how and when Pam’s meds are delivered that that would take time to do and I was to pick them up on Friday. Unperturbed, I went home oblivious to the fact that Pam was still days away from Ocean Grove and all her meds were now at the pharmacy! Therese (a TRIO Support carer) was still with Pam and so back I went to bring back enough tablets to suffice. By the time I got there, Brooke had counted off the correct amount of tablets and had put them into properly-labelled safety-lidded pill bottles – all very professionally done and done for me at no charge!

I was somewhat bored on Thursday afternoon and I was tiring of looking at “Pam’s ‘Going-it-Alone’ List” document sitting in front of my PC keyboard, so I decided to start packing whatever I could. Here's a picture of some of the stuff going down in the car - including me, 'cos I'm driving...

(You'll notice that I didn't bother to comb my hair and that I haven't as yet been beaten quite enough with the ugly-stick. At least that's MY opinon)

There's the electric wheelchair (that's what I'm sitting in), two packed cases (with a rug on top) and boxes of PEG food. I'm nursing a box of feeding-tube Compatysets as well as a box of 50ml syringes. A few other things including the wheelchair charger are out of sight and this lot doesn't include a stack more, including the Compatyset feeding tube stand, that I can only collect and pack on the day that Pam actually leaves - what fun! This lot wouldn't fit into a Falcon, but it fits into my Renault.

Friday came and off I went to collect the Webster Packs. Brooke was there as was Pharmacist Tim DeBoo welcoming me there. The blister packs were nearly ready to go and only need to be sealed – I offered and was allowed to help this happen. Webster Packs have to be seen to be believed – each cell is comprehensively labelled stating exactly what’s within and dates and times of the day to be delivered are also clearly labelled. Four times of day are provided for, but for Pam’s requirements there are seven times each day. This is one of the difficulties that Brooke confidently dealt with. One set of packs for four of the medication times and another set for the remaining three. It’s not quite as straight forward as that, but I won’t go into the details.

Incidentally, Tim DeBoo used to play in Mildura District Brass Band and strangely enough, the pharmacist from the Deakin Ave Chemmart branch, Geoff Steedman, still does. That could have something to do with why I choose to shop there. But I must say, having people on staff such as Brooke counts for much more.


It's now Tuesday 26th April as I type this...

All went almost according to plan for Pam’s trip to Ocean Grove. I rang the ambulance at 6pm Sunday 17th and was told I’d be rung back as soon as the air ambulance flight-time was known. At 7:50 I was indeed rung and told that Pam’s flight would almost certainly be leaving at 10am next morning.

Wonderful! I rang up TRIO and requested cover for Pam from 6:30am to allow me to get away early. I had everything already packed and those things (wheelchair, two luggage cases, colostomy gear, catheter gear, boxes of liquid PEG food etc) just needed to be taken to the car in readiness for the morning. I was up at 5:30am, Therese arrived at 6:25 and I was off to Ocean Grove!

At 10:15, I rang home expecting to get no answer, but Therese did and she said the ambulance was just arriving. Well at least they’re there, I thought – and smiled. All was well and the world could keep turning!

I arrived at Karingal Ocean Grove House around 1:45pm and had just said hello to the staff when Pam’s ambulance arrived – all the way from Avalon Airport. Was it good timing or a fluke? I spent the next couple of hours unloading Pam's gear from my car, PEG-feeding her (her 11am feed – somewhat late), explaining Pam’s needs to the staff and trying hard to ensure they understood that none of my ways were set in stone – they were to adopt any procedures they were used to just so long as Pam was happy and properly fed. Then I drove to my sister-in-law Dorothy’s place for the night prior to my return to Mildura next day (Tuesday). First stop on my way home was to Grace McKellar to see my brother Ted. He recognises very few folk these days, sometimes (far too often) not even his own loving wife Dorothy, but when he saw me for the first time in 18 months he said "You look like my brother Eric". Well that deserved a hug I thought and so gave him a good one.

Here it is, a week later… It’s amazing – I don’t know what they’re doing, but every time I ring Pam she seems younger and stronger. Her voice sounds more like it did prior to her stroke and if I didn’t know better; I’d swear she no longer had MS. She seems to be VERY happy – our daughter Jeni has been to see her and her mother and sister have taken accommodation in nearby Barwon Heads and are spending heaps of time with her. Pam told me yesterday that today she hopes to get outside with them in her wheelchair – to date, it’s been too cold, she said. I’d love it if she could get out and have a look around.


OK, I'm now writing this on 2nd May, 10pm.

I arrived back home at 4:20pm today and then unpacked my stuff and 99% of Pam's. I'd left her behind in the Geelong Hospital (Yes, the HOSPITAL..! read on) with a few tins and packets of PEG food and some colostomy gear, me being optimistic that she’d be back in Mildura just after I arrived or perhaps tomorrow – but now I’m not holding my breath!

As I described above, Pam was having a wonderful time and getting noticeably stronger by the day. I had driven down to Ocean Grove on Saturday 30th April, arriving early afternoon and there was Pam looking radiant. Everyone there, staff and clients alike, were delighted with her. I spent some time with Pam then left intending to return next day to pack her ‘stuff’ (electric wheelchair, 2 luggage cases, PEG-feed stand, assorted boxes etc), into the car.

However, for some reason my mobile phone decided to malfunction through the night and while I ate breakfast on Sunday morning, my sister-in-law Dorothy got a phonecall from daughter Jeni. She had been trying to ring me for some time on my malfunctioning mobile to tell me that Karingal had been trying to get me but couldn’t and so they defaulted to ringing her in Mildura. The message was for me to ring Karingal urgently…

My mobile phone was stuffed (I thought) so I used Dorothy’s landline, which she would have preferred I did anyway.

I was told that Pam had felt nauseous and had vomited in the early hours after sunrise and may have aspirated some (AGAIN!). Penny, the head person to whom I was speaking, said that the ambulance was called and had just arrived. I was later rung once more by Penny and she subsequently informed me that the ambos’ opinion was that Pam needed to be taken to hospital and I should go there forthwith to be there when she arrived.

And so it was – I got there (to Geelong Hospital Emergency Dept) 10 minutes before the ambulance arrived from Ocean Grove but was made to wait a further 15 minutes while Pam was 'settled in'. I watched TV, but don’t remember a single thing I saw.

I eventually was shown to Pam’s cubicle (No 13) and there she was – thoroughly back to her pre-holiday state. She had been crook and was still feeling quite a bit iffy, she was dog-tired and could hardly string three words together to talk.

All this was happening the day before she was to be flown home! Yeah, flown home with happy memories of her wonderful back-handed holiday, a back-handed holiday now with a sting at the end.

On the previous Monday, Pam had been loaded into her wheelchair and taken by bus into town to a mystery café by the beach. Waiting there for her, to her surprise; was her mother, sister, brother-in-law and their extended family. She was fitter than she’d been for 24 months and evidently had a ball talking happily with them all and looking at the waves and the surfers thereupon.

What was happening now was not even a week after that happy time, but of course I’m so glad she had it just the same - perhaps even moreso.

Getting back to Sunday (yesterday), I drove to Karingal to collect Pam’s ‘stuff’. Penny had been an angel and had packed everything up according to my list – I could have kissed her! I had it all packed into my car within 40 minutes and I then once again drove back to see Pam. I stayed while she was admitted and trolleyed to bed B, room 703 (7th floor – at the top) in the Heath Wing of the hospital. And that’s where she is as I type this.

Whilst in the Emergency Dept, Pam was chest X-rayed and shown to have clear lungs. A second X-ray was needed at some time later to ensure there was still no infection clouding, but when I went back this morning (prior to driving back home to Mildura) Pam was looking quite well. The 2nd X-ray was still to happen, the previous Air Ambulance had been cancelled and another wouldn’t be booked until the good doctor had seen the yet-to-be-taken 2nd chest X-ray and had arranged a bed in one of Mildura’s 2 hospitals (Base or Private) – both of which are probably crowded to buggery, knowing my screwy optimism.

So here I am tonight, having been told by Geelong Hossy that Pam won’t be coming home today, but prepared to bet better than even money she’ll be home someday soon, maybe tomorrow.


Having had a big sleep, it's now Wednesday 3rd.


Pam's OK - no pneumonia and she wants to come home. Indeed that’s to where she’ll be coming – into my care and not to either of Mildura’s hospitals. So that's a plus!

Alas, they couldn’t get an Air Ambulance booked for this afternoon, but I was told she’d definitely get one tomorrow. I cannot know at this stage exactly when she will arrive here and so I have just now organised Geoff Steedman (the Pharmacist) to play my euphonium at a ‘Vintage Brass’ job in Ouyen, scheduled for the middle hours that day. I just can’t go – I’ve got to be here for my bride! Everything is unpacked and put away - the only thing missing is the missus.

(This holiday is turning into a book!)

It's just gone 4:15pm and I've also just received a call from Heath Wing (Geelong Hossy). The Air Ambulance folk have decided they can bring Pam home tonight, picking her up from there (by road ambulance) around 5pm (in just over half an hour!) I have just cancelled some previous cancellations and I guess that just about dusts off this holiday story. I wonder what happens next, and what its title will be?

A slight challenge or is it something serious?

Pam had been doing well since bringing her home from hospital on Feb 24th. The old routine was quickly resurrected and life was good, but on Saturday morning, 5th of march, having given Pam an early (6:40am) shower prior to her 7am PEG feed, had just dressed her and was fetching her lifting sling from the spare room when she 'vomited'. At least, that's what Pam reported to me when I returned with the sling - but there was no sign of emitted vomit. Pam had evidently regurgitated some of her stomach contents into her mouth and had attempted to re-swallow it.

I wondered if she had aspirated any of it, and suggested the same. Pam said "I don't know", which sadly, I've leant to take as meaning "possibly yes". Pam's hoping to avoid 'what happens next'.

I put it to her, that if she began to feel the slightest bit out of sorts, I was going to ring for an ambulance and within 5 minutes, Pam asked me to do just that.

I should point out before going any further, the early start was to allow for the shower she wanted and yet allow me to get to another appointment I had at 9:00am. Maz, the TRIO Support Carer was coming in at 8:30.

The ambulance arrived just after Maz did, and Maz wonderfully took it all in her stride. The ambulance officers quickly determined an anomaly in Pam's left lung and whisked her off to the ED at Mildura Base Hospital, with Maz and I following by car.

Pam's chest was X-rayed and it was determined that she had aspiration pneumonia in her left lung and would be admitted for treatment. Strangely enough, Pam didn’t look as distressed as one would expect and I was relieved. She was eventually admitted to Ward 3 and by Monday, she looked like this...
















Now here's the problem. The doctor on duty told me on Tuesday that the sphincter where Pam's oesophagus joins her stomach, has been weakened by her progressive MS and possibly by the stroke also. The net effect of this is that Pam may now regurgitate almost chronically. To counter this, Pam must be fed sitting up straight – and stay sitting up like that for several hours thereafter.

I took this thought home and concluded that if Pam’s reflux problem is to become chronic, then ipso-facto, so is her propensity to get aspiration pneumonia, chronically. This is not good – all pneumonias are life-threatening in my book. I’m going to have to talk some more to these doctors, I reckon.

Here I am, back again on Friday 11th March.

I've been previously given enough hints by hospital staff to think that today was the day to bring Pam home at last, but I had to take it steadily because Pam's electric wheelchair was currently being modified to suit her smaller frame - but was due for completion mid to late morning today. And so, off to the hospital I went to attempt to ascertain my new caring duties given Pam's new problems.

Having gotten that sorted, but also noting Pam's PEG tube was currently blocked, I was off to fetch the wheelchair from Country Care's workshop. In due coarse I was returning to Pam, but on the way there Dr Sarah (of MBH) rang me to say Pam would not be coming home today - something to do with the blocked PEG, as I recall. I can't say I was disappointed; Pam wanted to come home, but I didn't think she'd been well enough for long enough - if you know what I mean. Anyway, I eventually arrived.

Pam was sitting in an upright position in bed having finally been given her PEG feed. (The posture was intended to discourage gastric reflux.) However it wasn't too long before Pam looked at me and indicated with her hands that she was about to throw up, so I ‘up and got’ the spew-bowl in readiness. Pam obliged with three vomiting bouts and brought up quite a lot (considering up until now, she had always re-swallowed it). What happened next, of course, was that she proceeded to get it caught in her throat (and probably her lungs) and had a horrible gurgly albeit weak cough thereafter. I alerted the nursing staff of this and watched for a little while as a nurse settled Pam. The nurse told me that Pam wouldn't be coming home for a while, but was in the best place. And so I took my leave.

I took another call from Dr Sarah soon after, telling me that Pam might be able to come home at the weekend or possibly Monday.

I have the wheelchair already in the car and Pam's coming-home clothes are with her, so I'm all set to go and get her - but I'm not so sure when it'll be.

Later..

Well, it didn't take me long to find out.  On Sunday morning (13/03) I was there to hear the good doctor suggest that Pam could now go home.  Pam happily agreed and so did I - up to a point.  Pam still had oxygen being applied just 5 minutes before the doctor had arrived and I'd rather have seen her not needing that for a whole heap longer, but at the same time I was bored and wanted someone to care for.  Anyway, I was told to come back at 2pm. because there was much to resolve re pharmacy and paperwork.  At 2pm sharp, there I was with the wheelchair (I was IN the wheelchair).  Pam was nearly dressed, needed a colostomy change as well and by the time all that happened and Pam lifted into the wheelchair, out we went - into the rain which had just started.

By the time we were driving away, the rain REALLY came down, but just as we pulled up in our own driveway it had settled into much the same annoyance as when we left the hospital.  I got Pam in as quickly as I could; lifted her out of her chair and got her straight into her welcome bed.  It was 3pm.  Pam was in hospital this time for a week and a day.  It'd be nice to think she didn't have to go back for a long time.

Another Reprieve

Pam's return home was accompanied with a plethora of paperwork, much of which was to do with a new regime of feeding and flushing for her stomach PEG. Life gets exciting and when one realises that the wonderful ‘routines’, ‘habits’, ‘rituals’, ‘monotony’ that had achieved some degree of hallowed perfection over the last many months, had just been thrown out the window, one has to get philosophical; smile surreptitiously and see what he can resurrect out of the mess.

Well, what can I resurrect if I now give Pam her first feed at 7am (when I used to wake up at 7:30), followed by a medicated PEG flush 2 hours later and in another 2 hours another feed and so on for four feeds and three in-between PEG flushes all to be finished by 8pm. Of course, the four feeds have their own pre and post flushes don’t forget; and if I seem to be a bit niggly, don't forget how Pam could feel and with much more justification - if she so chose to. Her stoicity keeps me firing happily however, believe it or not.

It occurs to me that no reader of this would ever give a damn as to the 'routine' detail, and it’d take way too many key-strokes to describe it in any detail anyway, so we’re ALL happy, hey – so therefore I’m not telling!

(There are many postings for this blog - please check the Archive for those not displayed here.)

And it's not even winter

(...but this is a silly summer!) Living with someone in the later stages of MS has its surprises, however sometimes the surprises aren't much fun, more's the pity. I've maintained for years a document to help others who may come in to care for Pam to get some idea of what normally happens. This recently had to be updated (yet again) because of the Dietician’s recommendation of four daily cans of PEG-fed food instead of the customary three.

To ease the difficulty of having an odd 2/3 can or 1/3 can sitting in the fridge as the day wore on, in order to deliver one and one third cans per feed, it was agreed between myself and our most frequent carer that starting the day with two full cans in the supply bag will obviate this difficulty, with reasonable care. After all, ‘one and a third’ cans per meal is OK on average, but if a push comes to a shove, Pam is known to have been able to take two cans at once without even noticing. Ah, but cutting one corner fouls another. When the pump was in play, bolus feeding was easily programmable, but with a gravity system this luxury doesn't exist. To deliver one and one third cans from a bag containing two cans worth takes some deliberation (regardless of the broadness of potential tolerance).

The truth is, just as it was with the pump and my subsequent errors with it thus forcing me to abandon it, it didn't take too long for a miss to occur in stopping the PEG feed at the correct moment and Pam being delivered (slightly) more food than she was supposed to have and as it turned out, this time, was quite uncomfortable with. I came home to find Pam dry-reaching and gagging, and for a while at least I thought the (rather minor 25ml) over-feed was the crazy cause. Well if indeed that was the case, it'd soon settle down in under an hour or so and that’d be that, so I thought.

Well Pam just got gradually worse. The over-feed (that insignificantly slight over-feed) happened Friday morning, but Pam was regurgitating almost continually not because of that, but because she'd evidently earlier caught a vomit-bug of some sort. The feed error was merely coincidental and unfortunate. Last night (Saturday night) as we were in our adjoining beds, Pam was definitely not normal. I feared she had aspirated some swallowed vomit which accounted in my mind for her rattly breathing. I turned on the light and watched her breathing - tummy rising and lowering, not her chest - and eventually announced I was going to phone for the ambulance. Pam didn't argue too much and in due course they were here. They quickly determined that Pam's temperature was sky high, as was her heart rate and promptly took her off to hospital.

Mildura Base Hospital is hard-pressed to cater for emergencies and yet the staff are calm and professional. They soon had Pam's nausea well and truly smothered with some wonderful mysterious substance, but as I type this in the early hours of Monday morning, Pam lies in a bed, as a hospital admitted patient, still in the ED Dept; such is the hard-pressedness of that which I wrote. (In spite of the time stamp, this update was published at 12:55am, Monday 21 Feb 2011 ADST)

Here I am once again adding to this - it's now Wednesday 23rd February and I, just this morning, loaded both the wheelchair and Pam's coming-home clothes into the car (van) with a half expectation of her hospital discharge being today. I had suggested to the medical staff earlier that if Pam needed more time to recouperate, could I invoke our private health cover and have her tranferred to Mildura Private Hospital? I was told that that was entirely up to Dr. Terry Cook, Pam's appointed treating specialist (Terry is a Physician and I've known him for decades). Regardless of this, it looks as though Pam comes home with me tomorrow.

What happened, I hear you ask? - well the cause of the vomit-bug is still a mystery as far as I am aware, but may have come from a bladder infection (a common event in view of Pam's supra-pubic catheter). Anyway, the vomiting eventually aspirated into Pam's left lung and caused an infection which would have become pneumonia if it hadn't been picked up when indeed it was. Pneumonia is life-threatening to otherwise completely healthy people, but I fear it would be fatal to Pam in her frail condition. Here's a picture of how she looked on Monday, still with an infection-induced fever...

(Isn't she beautiful though?)

Pam responded well to the antibiotic therepy and is now just waiting to feel strong enough to come home - Terry says,"Fair enough!"

(There are many postings for this blog - please check the Archive for those not displayed here.)

Variety is the Spice of Life...

- but monotony isn't necessarily the sour grapes of depression, however monotony breeds routine (much more efficiently than could familiarity ever breed contempt, at least in my case) and routine imposes itself relentlessly without deliberation or forethought.

The art is to recognise that if what you’re doing is worthwhile and if you do it the same way (more or less) every day, then you’ve probably worked on it to get it, over time, to be so efficient. Indeed, this is where I am and it’s been noticed in my case by experts and novices alike. I will deal with some of my weird routines as a later addition.

Why am I bringing this up? Well, it’s because routine has a dark, dark side – read on…

Since Pam’s stroke two winters ago, as you know (if you’ve read this upside-down blog bottom to top) she was subsequently fitted with a stomach PEG feeding tube. To use this properly, the tube must be flushed through with water before and after the liquid food is delivered (via the pump). Emma Staniford, the Mildura Base Hospital Dietician, determined that for Pam to get the required fluid intake, the pre and post water flushes should be 3 (not 1) X 60ml syringes each. (A 50ml rated syringe will hold 60ml when full).

Don’t be confused by these figures, the point I’m trying to make is the NUMBER of openings and closings of the clamp on the PEG tube, believe it or not.

Each time a syringe or feeding tube is inserted into Pam’s PEG tube, the tube must be clamped until insertion, opened during insertion (otherwise the insertion won’t go completely in), the liquid (water or food) delivered, then the clamp once again closed. If one is delivering 3 pre-flushes, for example (and that happens 3 times a day, 7 days a week), one finds oneself opening, closing, opening, closing ad nauseum and this quickly becomes monotony, not routine.

Over time I have noticed that I’ll make a clamping error about once per fortnight. For example, I’ll attempt to inject a syringe-full of water and then notice the plunger will not budge. It doesn’t take Einstein to figure out I forgot to open the clamp. Alternatively, I’ll remove a syringe and get my fingers wetted with a slight water discharge from the PEG – hallelujah, I forgot to close the clamp. And so it goes – as I say, I reckon I make a little blue like this about once a fortnight. Now let’s do some maths – 3 pre-flushes, 1 pump feed followed by 3 more post-flushes is 7 openings and closings of the clamp per meal, which is 21 per day. I estimate I make an error about once a fortnight, that's once in every 14 x 21 = 294 clamp closing operations per fortnight. One 7th of these is the serious error of closing the PEG clamp prior to turning on the pump. With the assumption of everything else being equal, this should happen one seventh of once a fortnight, namely once every fourteen weeks. In other words, one serious prang every 2058 closings. Well guess what – if there’s a probability like this that it will happen, you can bet it does!

The significance if this particular clamp-closing error cannot be overstated – as soon as I start the pump, it is a fixed delivery pump and within less than a minute it will have blown the plug out of the (not currently used) medication-input tube on the PEG simply because the liquid food has nowhere else to go and is being force-fed. Here is a picure of what I am talking about - the feed-tube enters from the lower left, the PEG opening (and open plug) is evident and attached to it slightly above and to the left is the plugged medication input. Farther up the PEG tube is the clamp.
















I will have replaced Pam’s sheet and blankets over her by then, settled her and retired to the lounge room to answer emails, watch TV or write this blog. About 30min later, Pam will ring her bell to get me to come because she feels ‘wet’. I lift the blankets and see a mini-lake of liquid food soaking into Pam’s buttocks-cushion, the bottom bed sheet, her knickers, her top – you name it. It’s a mini-disaster consequenting from an innocent clamp-closure that would otherwise be insignificant. I say MINI-disaster because I can easily think of a lot worse disasters potentially awaiting us, but this error requires me to get the lifter and get Pam off the bed while I change everything. Isosource liquid food takes FOREVER to wash out of bedding – and remember, Pam still hasn’t been fed!

This error makes me very particular about that clamp for a few weeks if not months, but the mathematics eventually applies itself and off I go making that mistake again and again and again… The last time it happened, I thought, "Enough’s enough! I’m not getting any younger and as I grow older, I’ll cetainly be making this horrible error ever-more frequently, so it’s got to stop NOW!"


Gravity Feeds

Over the many months since the PEG procedure, each morning as I fitted the first food bag and feeding tube of the day into Pam’s PEG input, I would notice that it would gravity feed, quite quickly until I subsequently fitted the feeding tube to the pump prior to activating it. I had heard of gravity feeds before – namely, using the 50ml syringe tubes without their plungers, hand held for each of the 5-tube (250ml) feeds. That idea never really grabbed me – I remember actively suggesting getting the pump in lieu of that labour-intensive gravity-feeding for Pam, if appropriate funding could be allocated. (Funding is another issue I should explain using this blog, but will keep it for a future edition).

And so now here I was many months later with the great brain-wave – would not the bag and feed-tube, manufactured specifically for the pump, suffice for a hands-free gravity feed?
I won’t bore you with what happened next, except to say it worked like a charm. The drip-chamber in the tube was originally used by the pump’s processor to determine whether there was flow or not – and that’s exactly what I now use it for; as a visual aid.

This gravity feeding initially* delivered the 250ml in around 40 minutes c/f the 60 minutes via the pump, but that’s a boon, not a bane. Also, if per chance I inadvertently close the PEG tube as before, the lack of drips tells me straight away and even if I don’t look, there’s no disaster because it’s simply gravity fed.

Just last week, I returned the pump to the Dietician and made an appointment with her to explain what I’d done and why.

*Emma, the Dietician, concerned about Pam’s weight, has now recommended 4 cans of Isosource over the 3 daily meals, so now the delivery via the gravity feed takes around 50 mins, allowing for the extra food per serve – it’s still all good! I’m smiling!

(There are many postings for this blog - please check the Archive for those not displayed here.)

Her Story Disseminates

A casual email to Rebecca Kenyon, Managing Editor, Periodical Publications, MS Australia had a surprising repercussion as it turned out. All I did was to draw her and her staff's attention to this blog and before I knew it, I was sent a draft of an article to be possibly published in their upcoming quarterly InTouch Magazine. The draft was impressive but pointed out a possible space allocation problem. Nevertheless, before too many weeks passed, Kable Fransen, MS Connect Information Officer, emailed me with...

"Just read your article in the MS magazine InTouch – fantastic. Congratulations to you and Pam both, mate!"

I thought, whacko that's great, now when do I get my copy of InTouch? Ah, but I'm a sticky-nose and wondered if it was Googleable - after all, what isn't these days? Sure enough I found it - it's clickable here and the story is on page 11 (Rebecca also writes some nice things about me in her editorial on an earlier page, but don't look there).

I was rapt when I saw what was written but was a little bothered in that I am being made out to be special when I'm not, but Pam really is. In spite of the attention given to me, read between the lines - it's Pam's story and I want it to be known to as wide an audience as I can because I reckon it can give positive hope.

(There are many postings for this blog - please check the Archive for those not displayed here.)