Sunday, November 13, 2011

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

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.

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.

Thursday, October 13, 2011

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

Tuesday, September 13, 2011

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'.

Wednesday, August 17, 2011

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.

Monday, July 4, 2011

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.

Saturday, April 9, 2011

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 cafĂ© 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?

Tuesday, March 8, 2011

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.


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.

Sunday, February 27, 2011

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.)

Sunday, February 20, 2011

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.)

Sunday, February 13, 2011

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!

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