Continuing frustration for my very brave Pammy

It's now mid January 2012 and I felt it was time to report on my poor wife's frequent torments.  (I don't think I'd wish MS on my worst enemy - if I had one.  MS is simply horrible!)

As was reported earlier under the heading 'Applied Love v/s Applied Cruelty', Pam continues to be bothered by random feelings of nausea, all too frequently developing as a regurgitation into her mouth and subsequent aspiration - potentially all the way into her lungs. There, it would quickly result in aspiration pneumonia which, as you may have already read below, is now well known to Pam

Since the last posting, Pam has aspirated her stomach contents on two more occasions - including one just yesterday.  I looked through my diary to see if I'd written the dates when Pam got crook enough to be hospitalised, but that wasn't a happening thing - I'd been a bit slack; so I went over to the hospital to ask.

I should add at this point how impressed Pam & I are with the attitudes, help and care regularly demonstrated by the doctors, nursing staff, administration and general staff, given the trying conditions they have to work under in the hopelessly under-designed facility; it is without exception that their attitudes are simply amazing.

Well, none of the staff took pleasure in telling me that these days, information about other people's hospitalisation is forbidden due to privacy laws - even to loving husbands. (It's funny, but I anticipated that very response as I spoke.) It was OK though I thought - I have Pam's medical and financial powers of attorney and I remember giving copies of those to MBH months ago, so that'll give me the right to be told.  Ah, but they couldn't find them as it turned out; so I was almost back to square one.

However, Chris from Hospital Information Services said I could email a copy of Pam's medical P of A if that was easier and he would then be able to tell me the dates. I did that deed just before I took the picture below.

Just to prove a point, here's a picture of my brave lady taken only a few moments ago.  Who'd have thought just yesterday, she was troubled enough to be ambulanced to Mildura Base Hospital's Emergency Dept?

Here it is now Thursday 19th and I've just received Chris's reply. He says…

Inpatient

8/11/11 – 9/11/11

ED Presentation

12/12/11 – 12/12/11
17/01/12 – 17/01/12

… which is exactly what I wanted to know.

The November overnight admission prompted the previous posting and that was for Pam's PEG tube replacement but the next two entries (ED Presentations) were identical to each other insofar as that was when Pam regurgitated stomach contents and consequently had breathing difficulties.  She was coughing feebly (and ineffectually) and had a gurgly chest.  In each case I monitored her temperature, but that was all I could do.  On each occasion, Pam didn’t seem to be getting any better with time and if she had aspirated into her lungs, all that my thermometer could eventually tell me was that she had (once again) developed aspiration pneumonia. 

Each time, I was between a rock and a hard place.  Pam reckoned she was OK and didn’t want to go to hospital.  I on the other hand, didn’t want to risk Pam getting pneumonia.  That eventuality would take weeks to get over – but that’s the time I reckon (by experience) when her MS will attack most viciously and mercilessly. In fact it was a safe bet that Pam wouldn’t quite ‘get over it’.  She never does – her MS sees to that.

No, I was over the moon each time the X-rays confirmed Pam's aspirations had got no further than her trachea (wind pipe). The staff even congratulated me for dialling 000 for an ambulance, because they agreed it was far better to be safe than sorry.

...but when I look at those dates - September, October, (November), December, January.  This is very bothersome - what has February got in store I wonder?

New PEG - New Hope?

Today's date is 13th November 2011, our youngest daughter's birthday. It occurred to me that our country leaders are 20 years my junior but still my ‘in their mid-30s’ daughters’ seniors - and that's good!

Just 5 days ago, Pam was hospitalised (Day Surgery) for her overdue PEG-tube replacement. For many months, the old tube had been blocking up and otherwise temperamental and our Surgeon, Mr Chambers agreed that it was well overdue for a change. The poor old tube was knobbly and gnarled with bits of dried, caked food internally clinging in the bumps and frequently dislodging, subsequently causing difficulty.

Neither Mr Chambers, nor me as it turned out, had any idea of what the type of PEG the old one was. I thought it’d be in some hospital records, but not so apparently. I assumed it was a “non-balloon” PEG which has a different removal technique to the balloon type. Anyway, that wasn’t my problem and I got Pam to the Base Hospital at 9:30am as required.

I took Pam to the Day Surgery as required and she was soon transferred to a hospital trolley, but not a lot was happening thereafter so I eventually went home at about 11:30am to return closer to Pam’s recovery, post procedure. The old PEG indeed turned out to be a ‘non-balloon PEG’. For the curious, the non-balloon peg removal is demonstrated at http://www.youtube.com/watch?v=4CCnlUtBcdU

When I finally got to see Pam at around 2pm, I was VERY impressed with the new PEG. It was of clear quality soft plastic tube, balloon secured, slightly shorter and with NO tube clamp. The lack of a tube clamp had me bothered for a while until ‘the penny dropped’ and I realised that this meant that a potential force-feed pump issue no longer existed! Furthermore, I quickly discovered to my enormous pleasure, how easily PEG feeds and hydrations now flowed. In addition, being a balloon type tube, it suddenly comes into the class of Pam’s catheter situation – and I do these changes myself when necessary. I’ve already asked about my future changing of Pam’s PEGs and so far have had positive feedback from the hospital dietician. (Training will be required, but not until the next changeover.)

Pam got over the procedure quickly although I was lucky in that bed-space was found for her to stay over until Wednesday 9th, when I brought her home and had her there by 10am. The overnight stay was precautionary but fortunately unnecessary (in hindsight), as it turned out. It’s a pity hindsight is about as dodgy as foresight, isn’t it?

Life’s going along well enough at the moment although over the past two nights, Pam hasn’t been able to quite finish her 3-brix overnight feed. (Each of the ‘brix’ contains 237ml of food, totalling 711ml per night; 9:45pm – 7:45am.) Pam’s been feeling full with just 50ml still remaining and yet her dietician has specified she consume FOUR brix (948ml) of liquid food per night. The dietician wants Pam’s weight to reach 60kg, but at the moment she is 56.8kg and possibly now losing some. For many nights, Pam was managing 3 brix completely.

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

Applied Love v/s Applied Cruelty

A bothersome reality of this upside-down blog is that the happiest material is at the bottom (the bottom of the 2010 posts that is). With the ongoing progress of MS, the story simply saddens and that is the part that you, dear reader, must encounter first.

Nevertheless, this posting was commenced on 13th September 2011 and if nothing else, it tidies up the curious ending of the previous post. Pam eventually recovered from her pneumonia and I brought her back home last Wednesday (7th).

Pam loved to be back home and everyone loved having her back, especially me. She was somewhat tenderised by the hospitalisation but within a couple of days she was getting noticeably stronger. It seems like there is no end to these 'near-death' experiences and yet Pam stoically comes through each one.

Yesterday, while I was down town taking some respite leave, I received a call on my mobile phone from Louise, the TRIO carer who was then looking after Pam. Louise was worried about an apparent nausea reaction to Pam's 12 o'clock PEG feed and she didn't know what medication to use to combat it. Additionally, Pam had developed a gurgly cough, she said.

My heart sank to my boots. I hurried back home to find Pam not coughing all that much, but when she did, it was very gurgly-sounding. I gave her an anti-nausea tablet and thanked Louise and dismissed her a few minutes before her scheduled knock-off time of 1:30pm. I took Pam to her bed and left her propped up there to assist in minimalising aspiration - if I wasn't too late.

Pam continued coughing and I kept asking her if I should call the ambulance. She said she didn't feel crook and that she did NOT want to go back to hospital, but by 3pm I'd had enough and called 000 regardless.

The paramedics didn't take long to arrive and quickly assertained that Pam's lungs seemed to be clear and that the cough irritation was probably just in her wind-pipe. It was decided to take Pam to the Emergency Dept as that would be safer should Pam dislodge the irritating material (probably stomach regurgitation) and choke on it. So off she went in the ambulance with me following in the car. Pam was xrayed and ECG'd but it was a saline nebuliser that thined the irritation and allowed her to eventually deal with it.

I brought Pam back home about 7:30pm. She was so tired that she couldn't even control her electric wheelchair. It was almost funny - after Pam was hoisted into her chair, I took off toward the exit expecting Pam to be close behind in her chair. However, when I looked around she still way back in the cubical unable to manipulate the control lever of her wheelchair and looking longingly at me to come and get her.

Bloody MS, I thought - how cruel could it get? Applied cruelty, I reckon - applied by nothing but rotten luck to a beautiful, wonderful person.

I went back and towed Pam to the car by her chair's control lever. That must have looked very strange to those I passed.

Anyway, Pam is happily home once more and Jeni brought little Ellie around to say 'hello'. Here's a happy snap.




















It'd be nice if all women were like Pam - she is simply 'Applied Love'.

Delight followed by Dismay

In a strange way, this story is reminiscent of a previous posting in which a good thing is followed by a hospitalisation. The ‘good thing’ this time however was the safe arrival of granddaughter #3, this time to youngest daughter Jeni and her husband George. Poor Jeni, now in her mid-thirties has been clucky for well over a decade and little baby Ellie, born 5:45am on Monday 8th August is not only Jeni’s absolute delight, but her MS-suffering mother’s as well.

Pam rarely asks to be driven anywhere in her wheelchair-friendly car, but for Ellie it was every day that was suitable for the visited ones. I was over the moon with Pam’s enthusiasm (and I am a keen Gramps as well – I might add) and so it was; lots of trips to see baby Ellie in hospital maternity and of course, when she at last came home to Jeni & George.

On Saturday afternoon, when Ellie was just 5 days old, these pics were taken of Pam and her. Pam was in her element!































My darling stroke-afflicted wife finds it difficult to talk and so finds it hard to express emotion, but you’d have to be Blind Freddy not to see how happy Pam was as I drove her home and put her to bed. She even slept with a smile of contentment. It was so beautiful.

That night while Pam slept, we think she aspirated a stomach regurgitation and when she woke up on Sunday morning, she was struggling with a gurgly cough. Nevertheless, she trivialised the symptoms enough to make me happy enough to, at 10:30am, be replaced by TRIO Support carer Therese, to allow me to go to the bandroom for the weekly social gathering, euphemistically known as “Morning Prayers”, but is anything but, in reality.

I returned at 12:52pm to resume my caring role only to find Pam horribly crook – barely able to talk and seemingly battling a losing battle with a horrible rattly, gurgly cough. In spite of her protests, I rang the Mildura Base Hospital (MBH) for advice and was recommended by them to ring 000 and get an ambulance to check her out. Therese finished her duty at 1pm and the ambulance arrived within minutes thereafter.

Apparently, all the time that Therese was there, Pam insisted to her that she was alright – and so I wasn’t notified. The Paramedics found congestion in Pam’s right lung and she was taken to the Emergency Dept at MBH.

An X-ray determined that Pam had aspiration pneumonia in her right lung and so there she stayed – for 26 hours (!) – in the Emergency Dept because there were no available beds anywhere in the hopelessly under-designed and under-funded MBH. Don’t get me wrong, all the staff persons there are wonderful; but are working in a seemingly seriously chaotic, congested place.

When I got back there on Monday morning, I was upset to see Pam still there in Emergency – at least they’d found a air-mattress bed for her, rather than the trolley. I told one of the doctors there that we had registered Pam as being a private patient and so I asked him if she could be taken to Mildura Private Hospital (MPH), seeing there were no available ward-beds for her at MBH. I was told by him that MPH would probably not take Pam on, because of her pneumonia. I was far from convinced.

So I went to MPH and told them of those doubts and was immediately assured that Pam would be thoroughly welcome – they had had her there many times before and all I needed to do was to find a doctor to care for her during her stay. They suggested our GP, Dr Bob. It turned out, the doctor who was charged with Pam’s care whilst she was in Emergency, Dr Soward (my Cardiologist btw), kindly agreed to continue monitoring Pam’s care in MPH, so whacko, it looked like Pam was about to be shifted. All we needed was an ambulance to take her there.

Getting an ambulance was easier said than done. There were several of them sitting outside, with the Paramedics ‘hanging around’ inside, but they were all required to be there until OK’d by Ambulance Control (in Bendigo) to do anything else. And so I sat with Pam in that noisy space for one or two hours until an ambulance was available. I had even offered to drive Pam over myself – I did have her wheelchair still in the car. Ah, but NO – it’s against hospital protocol.

I got sick of sitting, so I decided to take Pam's gear (PEG food, colostomy stuff, clothes, flowers etc) over to MPH, which I did and whilst I was there, I got a mobile call from Emergency staff that the ambulance was about to take Pam across. I walked to the corner of 13th St and Ontario Ave and eagerly watched and waited. When I eventually saw the ambulance coming, I quickly walked back to MPH expecting the ambulance to pull up at the front to where I was heading - alas they drove around the back "to the servant's quarters" as explained by one of the ambos, but nevertheless I got to Pam's room just as she did, with both ambos helping, her on the trolley of course. She beamed as best she could and so did I.

At about 3:30pm Pam was settled in that High-Dependency room, a 3-bed room but with Pam being the only occupant. It was such a contrast to where she had just come from. At last Pam could rest peacefully – and she did SO deserve that.

That was Monday 15th and here it is Thursday 18th as I write all this (as usual, ignore the American time-stamp at the top of this post). Pam is gradually getting better and I expect in a couple of days they’ll be talking of sending her home. I took this picture of Pam just before I came home to type this post. She is, of course, asleep - but she woke up soon enough.

















But this is a worrying development of Pam’s MS. Now, apparently, she spontaneously develops aspiration pneumonia in her sleep! How am I going to sleep when she comes home???

Here I am, Monday 22nd August. It seems now that an answer to the above question might be a while away, or perhaps never be answered. At the Private Hospital, Pam got stronger by the day and by Thursday, she was as well as she's been for a long time and very talkative and very excited about the new grandchild - but by Friday, she had aspirated again, in her sleep, and was very gurgly with her breathing. Antibiotic was administered by IV and Pam was holding steady until mid-afternoon yesterday. I got a phonecall from Chris, a MPH nurse we have known for years, and she told me that Pam had got worse and they were sending her to ICU at the Base Hospital.

I arrived at the same time as did the ambulance. I loaded Pam's PEG food, clothes and flowers into my car and her medicines went with Pam on her trolley. Once again it was a long wait at the ambulance end of Emergency Department until Pam was allocated to cubicle #3 in ED (ICU was completely full of patients - and why was I not surprised?) This morning I found Pam in a ward bed - the Paediatric Ward (!) One cannot blame the staff for not trying in a situation rapidly becoming hopeless. Physician, Dr Terry Cook was assigned to Pam's care (we have known him since a social occasion back in 1974). Dr Cook didn't look too happy re Pam's prognosis - he said Pam probably aspirated some saliva last Thursday night, which brought her here.

Perhaps Dr Cook can figure out some way to stop Pam aspirating in her sleep - and I like to be optimistic about it. But alas, I feel an ominous foreboding instead; and I'm scared.

It's now Friday 2nd September, 9am and Pam is still in the same room. She has been having quite a lot of trouble with her lungs - and still is. At long last, she is off the antibiotics as her lungs have apparently cleared of the pneumonia, but something is still very wrong because Pam now requires a considerable blast of hydrated oxygen up her nostrils to keep her blood oxygen reasonable. Attempts to wean her off this oxygen have simply caused her blood oxygen to become worryingly low again as a consequence.

A scan was made of Pam's PEG feed. Radioactive dye was added to 50ml of PEG food and injected into her stomach via the PEG tube. Almost immediately the J-shape of the stomach was visible on the monitor, but very soon afterwards a thin line growing vertically upwards indicated that Pam was refluxing the food into her oesophagus and it would have eventually got up to her mouth level and possibly once again aspirating into her lung(s) if Pam hadn't complained about her left arm being squashed against the bed rail. The scan was stopped and the bed adjusted so Pam longer had a squashed arm and that she was sat more upright - hoping for a gravity-assist. The Radiographer was happy though; there was enough evidence to allow the doctors to do a proper diagnosis, he thought - and there was too.

There was still the worry that Pam still had the potential to aspirate on her own saliva (ie aspiration from the other end) and from what I can gather, neither of these faults are directly treatable, but the nasty aspiration symptom possibly is. Pam is normally fed by a gravity drip feed (and NOT by a 50ml food slug given all at once, as it was for this test) and this feed takes a good 40 minutes to deliver the 230ml feed, so by using a medicine to encourage the stomach to quickly expel its contents to the duodenum ASAP, it lessens the risk of oesophageal reflux. How's that for thinking outside the square?!

Pam uses a device to test her inhaling function. the hand-piece contains three plastic balls coloured red, orange and black and an attached breathing tube and mouthpiece - the idea being, a gentle inhale will lift the red ball, a slightly stronger inhaling will also lift the orange ball and a strong 'suck' will lift the black ball as well. When I first saw this thing, I used my first finger and thumb to keep my lips off the mouthpiece and gave it a quick suck. Bang, bang, bang - all three balls up to and hitting the tops of their respective tubes in nothing flat. (But I cheat - I play in a brass band.) Next day I watched the physiotherapist give that device to Pam to try. Poor Pam couldn't raise any of the balls when she sucked.

So it is - I have twice now been encouraged by being told "Pam can probably go home on such-and-such day", but when that day comes, Pam's lung strength (or lack of it) keeps her right where she is. I was supposed to bring her home tomorrow, for example, but yesterday that also was nobbled.

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.