Anti-nausea as a potential life-saver

Pam has had several (many) long visits to hospital, particularly when her PEG-tube used to enter her stomach, to be treated for aspiration pneumonia caused by breathing into her lungs regurgitations from her stomach, as a result of nausea.  As you have possibly read, it now enters her jejunum to attempt to mitigate the nausea, but Pam's stomach still produces digestive juices - and it's possibly this that keeps the occasional insipid nausea upsets yet happening.

Each aspiration pneumonia attack destroys a bit more of Pam's poor lungs.

On recent hospital Pam-repair visits, I have become aware of Ondansetron tablets,  These tablets are amazing insofar as how quickly they eliminate the feeling of nausea.  The poor folk who receive chemotherapy as a result of cancer treatment can get these tablets on the PBS.  Sadly, I somehow think that that attitude is an example of tunnel-vision.  I cannot deny that they should indeed be freely available (to Safety Net card holders) for easing the horrors of chemotherapy side-effects - but I would also tend to think that they should also be PBS items for people such as Pam, for whom nausea relief is potentially life-saving.

Anyway, notwithstanding this lacking ideal, today I used a non-PBS prescription from my GP and purchased 4 tablets of Ondansetron for $16 from a particular pharmacist.  Another pharmacist in town charges $30 for the same thing.  Please don't misunderstand me - any tablet worthy of saving my dear Pammy's life is worth its weight in gold!  It's just that the rule-makers seem reluctant to include another worthy category.

I sent a letter to Mr Andrew Broad MP to see if he could do anything - it just irks me that the life-saving potential for a tablet counts less than does it's 'life-tolerating' aspect.

I must say that it amused me to see how they packaged the 4 tablets.  I have a photograph thereof, but when I look at it, I wonder how else they might have done so - maybe not quite so big and wasteful of plastic.  Ah, but $16 has to pay for something, I suppose... 

I'll say it again though - the tablets are well worth their weight in pure gold because of their speed of anti-nausea effect, and their potential life-saving effect in Pam's case.

A PEG Problem

I'm not sure why Pam's PEG tube so frequently gets blocked.  Up until last night, it had only ever blocked during the hydration flushes conducted during the day - even these had me puzzled, for water on its own cannot possibly block a tube, maybe the dissolved meds might exacerbate it, but if they’re truly dissolved (which I cannot guarantee that that’s always the case) then that wouldn’t block the tube either.  But the tube all too frequently got blocked and while I could usually unblock it again, I dreaded what might happen if it blocked during Pam’s overnight PEG feed.

This morning, I found out!

Pam was awoken by me visiting the loo at about 7:00am; she discovered and reported her bedding being wet.  I was in my underpants only and without my spectacles when I investigated.  Sure enough, the feed nozzle had disconnected and the still-going pump had subsequently delivered (and was still delivering) a considerable amount of PEG food, onto Pam’s body and bedding.  The bluey situated between her and her buttock-cushions had caught much of what had been delivered since the blockage, but there was still her nightie and knickers, part of one buttock-cushion, her upper sheet and blanket and the kylie under her buttock-cushions that had been wetted by the PEG food.  Bah!

Anyway, I took much of what I could to the laundry and proceeded to get Pam washed and dressed for her day in the lounge – in the process changing her PEG tube for a nice new one..  I returned to the bedroom and took everything else that was wetted to the laundry and only then did I take a shower and get dressed.  It was good to see the world with my spectacles at last.

That was this morning – now it’s well into the afternoon.

I have rung David Carson of David Carson Electronics (a good friend of ours) and asked him to consider supplying either a moisture sensor or over-pressure sensor to warn me of any future PEG blockages before the messy consequence can eventuate.  David promised me that he will get back to me in a day or so.  He is one of the few I know who appreciate what's available and/or possible to solve this Pammy-problem and additionally has the ability to make it happen.

The current PEG tubes are similar to Pam’s urinary catheters except they’re skinnier – just 4mm outside diameter compared with 4.7mm (I mentioned this in the previous post).  I reckon they’re too skinny given the viscosity of the PEG food, but it will probably be easier to deal with the consequence of the small diameter than having Pam’s surgery modified to allow for a broader tube – a task which might well be impossible.

Here’s a picture of the tube I removed earlier today – it had been thoroughly blocked by the dried PEG food that had set there once the coupling connection had separated.  It took a lot to clean, and I even partially inflated the holding balloon for your benefit.  At least you can get some idea of its width.

Cheers until next time...

Well here it is, night-time on 3rd October 2013 and I reckon I have got a solution for the PEG problem - but only time will tell.  Firstly the picture...

...as you can see, there is a black thing there, in addition to the ordinary stuff.

David Carson GAVE me a plastic box (normally used for electronic thingies). He wouldn't accept any payment, no matter how much I tried to offer and, from the sides of that box, I manufactured this plastic holding-clip, (currently attached to Pam's PEG tube with fishing line, but not for long methinks).

Here's another view.  The clip was cut from the end portion of the plastic box and while I'm aware that if there is a thorough blockage in the future, the PEG end (on the right in this pic) might be forced to slide to the left, up the tapered nozzle; but I doubt if it will.  As I said above, only time will tell.  ...and then I'll tell you, OK?

In case you're wondering, these photos were taken just after I connected and started Pam's nightly feed at 9:32pm a little while ago.  The pink cloth underneath is a folded tea-towel resting on her tummy intended to keep all the plastic apparatus (including the brand-new black plastic holding-clip) off that very part of her - you can even see a bit of her right hand.

Here's a picture of the clip on its own...

It's simplicity-plus, but I won't be able to test it properly until I get to change Pam's PEG tube once again - I managed to destroy the previous one in the process of making this thing. 

With another PEG to play with, I intend to clamp it shut, so that it appears blocked as far as the pump is concerned, fit the clip as shown above and then proceed to pump left-over PEG food.  If all goes well, the nozzle will stay in place and the feed flow will simply stop so that no drips continue in the pump's drip chamber.  With no further drips being evident to the pump's electric eye, the electronics of the pump will sound a very pleasing alarm - and the pump will stop.  I will be grinning, grinning, grinning!

I love looking after Pammy!

It's now only the 7th of October, but I've had enough doubts already about the downstream end, that I modified it.  See if you can see the difference...

What I did was to glue in an insert at the top end (in this view), simply in case the original didn't grip the PEG socket-piece firmly enough.  This one surely will!  Compare this (top end) with how it was in the previous picture (right-most end).  It still fits!

The things we do...

It has been a while since the last posting, but the reader perhaps should not think that nothing untoward has happened.  These days, those happenings are almost daily but it takes a build-up of them for me to finally find the time to detail even some of them on this blog.

Anyway, here goes…

On Saturday 7^th September, after dealing with a second Pamela bladder infection (still being dealt with as I type) I was attempting to give Pam her Saturday morning meds when I discovered that the PEG tube was again blocked.  I say ‘again’ because several times over the previous weeks, it had also blocked – but those blockages could eventually be cleared using either/or pressure or holding my mouth the right way.  J

This time however, no amount of mouth-expression-altering or pressure, swearing or whatever could allow me to inject any of the meds.  So, off to hospital I took her.

I normally get TRIO Pam-care support on Saturdays from 10:30am until 1:30pm, but I rang them and cancelled it.  TRIO are wonderful in that while normally one has to give 24hrs notice of such variation, but if hospitals are involved, they wear it.  I LOVE them!  I had Pam to hospital by 9:30 and we were out by 11:15.  TRIO let me have Pam-care cover restored from 11:30…  (XXXX)

I watched the A&E doctor fit Pam with a new PEG tube and commented that upon seeing the intestinal fluids entering the new PEG tube made an x-ray unnecessary as far as I could tell, so “Why couldn’t I do this?”  He gave me a couple of the appropriate catheters (these catheter PEG tubes are almost identical to Pam's supra-pubic urine catheters except for their diameters - 0.7mm difference) to use if I was game – and went on explain that although he could test for the expected fluid acid content (for correct tube-positioning), however I couldn’t.  My reaction was that if I got it wrong, I’d simply bring her back to the hospital.  Anyway, the expected life of these tubes is 12 weeks.  Pam’s now-blocked tube had been in for 11 of them.  I therefore still had 11 or 12 weeks before I had to worry about it.

It wasn’t all that long ago that Pam was being air-lifted to Adelaide to get these tubes fitted, then Mildura Base Hospital, initially reluctantly, had a couple of goes, using it’s X-ray facility – and of course the one mentioned above that I watched with no X-ray.   Anyway, it was exactly ONE week later (not 11 or 12), that that PEG tube sprung a leak!

It was again a Saturday; it was during the morning med/hydration flush via the PEG, when it sprayed out from a mystery fissure just below connection nozzle.  It was irreparably stuffed!

Oh bugger, I thought – another hospital visit?  Ah, no!  I had a spare PEG tube.

I had never fitted one of these and was fully aware of the possibility of the inserted tube entering the abdominal space instead of the jejunum (intestine).  But I remembered seeing the intestinal fluids on the previous Saturday, so what could be different today?  As it turned out, nothing was.  It was even much more painless as far as Pam was concerned, than were her regular supra-pubic catheter changes that I have now been doing as a matter of course.

All was good, but if anything can go wrong, it will.  The PEG-tube is prohibited from expulsion by virtue of the provision of a water-filled balloon.  This balloon, however, is affected by intestinal peristalsis and fluid flow and if the tube is not taped securely in place, would completely get ‘sucked’ into Pam’s intestine were it not for the bulky nozzle piece at the top end.  10-15cm of free tube is necessary however, to properly access the nozzle when Pam is dressed and so medical tape is used to allegedly counter the peristalsis.  On the evening of the same day (Saturday 14^th) as it turned out, I discovered that I hadn’t secured the tape sufficiently.  When I attempted to connect Pam’s PEG-tube with the overnight’s feed, I found the nozzle was hard up against Pam’s tummy.  No amount of pulling, however, would withdraw any of it.  Eek!

It was late, my head wasn’t clear, but the nozzle was readily accessible anyway with Pam in bed and so I connected and started the PEG-feed pumping, regardless - and went to bed.  But I awoke at 3am with the realisation that all I had to do was to deflate the holding-balloon and whatever was restraining the tube (presumably it was the balloon that had gone around and been caught at a corner in her intestine) would no longer be a problem.  Yeah!  All I had to do was to get up, get a syringe, empty the balloon, pull back the tube somewhat, re-inflate the balloon – and I could even do all of that without even disturbing the PEG-feed which was currently happening.  Ah, but that would probably disturb and awake my darling wifey!  So I lay there, watching the clock, until I eventually dosed off again at about 4:30am.

Yesterday morning (Sunday), I did all the usual things to get Pam up for the day; with the one extra task that I had lost sleep over hours earlier.  It was unbelievably easy to fix!

Ah, it was going to be a good day, I thought – and indeed, it was!

Just a little addition...  I called this post 'The things we do' and when I think about the things I do - and dare to wonder why - each morning when I enter the bedroom to terminate Pam's overnight PEG-feed, she greets me with a beautiful smile and a 'Good morning darling' welcome like this:

...so why would I ever wonder?

What a Holiday

I, for one, was as excited as I reckoned I might have been if I was about to go on a ‘Scenic Tours’ cruise boat tour of Europe.

Monday 5^th arrived and I was up early enough to pack my stuff and what was left to pack of Pam’s into the car.  I’d loaded the electric wheelchair the night before and on this morning, I had to fit Pam’s feed pump and pump-stand in front of that along with many boxes of meds, feed kits, feed boxes, colostomy gear etc., in addition to hers and my personal luggage.  It all fitted nicely.  Pam was due to be picked up by the ambulance at 9:30am to be taken to the air ambulance, but we had to wait until 1:30pm because of emergency needs elsewhere, whereas Pam’s travel was ‘Non-emergency’ - and fair enough too.

I was away soon after in order to get to Benlynne Park Private Nursing Home as soon as I could, without having to have Pam wait too long.  I had requested that Pam’s sister Val could be there when she arrived – and she was.  I got there 5hrs 50mins after leaving (approx. 7:30pm) and Pam had been there since 4:30pm.  Soon after arriving, I had all her belongings about her and our world kept turning.

I then drove down to Corio to spend the following six nights at my sister-in-law Dorothy’s place, travelling back and forth to Pam each day.  While in Geelong, I visited my poor brother Ted, who has fronto-temporal degenerative dementia.  I have a picture or two, but for some reason they load side-on and I don't know how to make them upright.  If I can figure it out, these last two sentences will be replaced with the fixed pics.

I quickly learned to go to some trouble to avoid peak-hour travel.  Even then, the traffic was not nice (compared to Mildura).

The staff members at Benlynne Park were doing their best and were lovely.  They went to great trouble to watch me as I demonstrated several things re Pam’s ongoing comfort, but sadly did not share the details with the staff of other shifts.  However, by the time this fact really jelled with me, there was only a few days left and so I didn’t say much.  Pam’s neck angle suffered as a consequence.  (I might detail exactly what that means in a later post.)

I collected Pam on Wednesday 7^th to take her to see her Mum on her 90^th birthday, at Brunswick Private Hospital in Moorland Rd. where she was rehabilitated after breaking her hip after a fall about a fortnight earlier.  They were obviously happy to see each other after several years apart.

I again collected Pam on Saturday 10^th to take her to her Mum’s 1:30pm – 2:3pm official birthday party at the same place, but in a large room there.  Here are some pics from that Stivala family event…

 

 

 

and, of course, a family shot; taken by a staff member as requested by Pam's sister Val, who is standing behind Pam's right shoulder:  Pam's got the rug and is being admired by her loving supporter from the middle of the back row:

 

I took Pam back to Benlynne Park and then drove to Val and Tony’s (Pam’s sister and brother-in-law) to kill an hour or two.  Each year they build a bigger and bigger Christmas Village - this is how it looks this year...

 

I later took Pam along to have a look.  It's stunningly brilliant and Tony claims that they made it up this year "Just for Pam".  The village is incredibly detailed and I was dumbfounded by it.

Then it was back to Benlynne Park to re-collect Pam and take her to Dino’s Restaurant at 518 Bells St. to celebrate grand-daughter Ellie’s (our youngest daughter Jeni’s little girl's) 2^nd birthday party.  It was another family do – this time the Shinas' side of the family.  Another bonza time to which these couple of pics attest…  

 

 

Poor Pammy had to watch on without eating... 

 

 

...but she thoroughly enjoyed herself regardless.

 



I dropped Pam back to Benlynne Park and returned to Dorothy’s in Corio.

On Sunday afternoon, I collected what I could of Pam’s goodies and spent the night at Val & Tony’s place in readiness for and early getaway in the morning.  I was up at 6am and had collected Pam’s remaining stuff (feed stand & pump, baby monitor etc.) and was away home by 8am.  Pam was scheduled to leave Benlynne Park at 2pm and I needed to be home before she got home.  As it turned out, I arrived home at 1:45 and learned that, because of bad weather, Pam’s departure would be delayed.  She arrived home at 6:30pm, having taken nearly as much time as I had to cover the distance.  I had the place precisely back to ‘square one’ before she arrived and no-one would’ve known we’d actually been away – except Pam and I.

I managed to pick up a bug on the way home causing cellulitis in my right shin.  Pam returned home with a dose of bladder infection.  Each ailment requiring Keflex capsules to fix 'em.  I have one pack for Pammy and another for me, with one repeat each.  Ah, something to souvenir!

Systems being tested.

As the time of departure rapidly approaches, I am pleased to say that all systems are “Go”.  It’s Friday 2^nd August and except for one or two things, all is well for a departure Monday 5^th.

What hiccups have there been you ask?  Well, last week a filling fell out of my upper left 2^nd bicuspid.  (that’s a tooth OK?).  This matched a recent refilling of my upper right 2^nd bicuspid, by the way.  Fortunately my dentist found time to fix the latest just yesterday, so all systems were still “Go”.

Last night, I was watching Dick Smith on telly with his documentary “Ten Bucks a Litre”, which had plenty of commentary about the excessive electricity we all use in our houses, when BANG, all the lights went out, Pam’s and my TVs died, all power gone except for the air conditioner, which was still going.  It was almost pitch black with darkness.

“Rat’s!” said I, wondering how to find a torch.

I found that the safety switch at the in-house switchboard had tripped out, but had no idea why.  Pam’s PEG feed was about to be started and I needed POWER.

I rang the after-hours number of a local electrician and found myself talking to the son of one of my deceased mates.  He came out and quickly found that it was the fridge that had failed – and how he discovered that had me wondering about my own tortured sanity, for not having thought of that myself.  I’m too ashamed to detail it here J

After the sparky left, with the assistance of the McCombes in unit One to store 2 X 4-litre tubs of ice-cream in their fridge, I managed to get everything else out into the fridge in the shed.  I went to bed but how I got to sleep, I’ll never know.  

This morning, I rang Jack Abell’s and ordered another upside-down fridge freezer with the proviso that it was 65ish cm wide and frost-free.  (The former wasn’t frost-free btw).

Andrea comes at 10:30 this morning to care for Pam.  I’ll go around to Jack Abell’s and square off for the new fridge.  It will be delivered this arvo while I am at Bruce McCombes’ funeral.  It would have been delivered this morning except for Jack Abell’s staff being at Shane Dougherty’s funeral.

All clocks have been reset properly and as far as I can tell, systems are still “Go”.

Just a thought – if the old fridge had failed next week while we were away, we would have returned home to no power and a fridge full of spoiled food.  If my filling had fallen out any later, I would probably not have been able to get it mended in time, having my tongue consequently ultra-busy whilst away.  Whew!

Here's the new fridge...

 

 

A holiday - or is it to be cancelled?

I had wondered about getting away to Geelong, subject to respite leave availability, to visit a couple of old Geelong Band mates Graeme Daly and Trevor Trigg whom I had just learned still get together as a trio with one member missing.  I reckoned I needed to temporarily fill in my missing place after 38+ years of not having done so.

As time went on, I reasoned that Pam could possibly use a getaway holiday too and that would also obviate the need for respite care for her - up here at Mildura at least.  I put the idea to Pam, and she showed considerable interest, particularly as her mother's 90th birthday was coming up.  Goody!  Checking the calendar the week from Monday the 5th of August to Monday the 12th seemed to be promising, so I set about finding out how it could be done...

Pam's Case Manager, Peta Weber, suggested that non-emergency air ambulance might be available for transport and that she'd help me find a nursing home with respite care included.  I would be taking the car loaded with Pam's goodies - her electric wheelchair, food pump and stand, Compat feed sets, food, meds, toiletries, clothes, etc., etc.

After a few disappointments, I found a place for Pam’s care at Benlynne Park Nursing Home, which was (thankfully) more than willing to cater for Pam’s respite care.  And so, in due course, a number of documents were sent to me from there, including a BIG ‘Respite Chart’ for my GP to fill in.  The size of this had me worried about the impost I might be giving to Dr Bob and so I typed up a detailed page, carefully worded, to explain to and help Dr Bob fill in the big form.  I then made an appointment to see him in this regard, which was to be yesterday at 10:45am.

But that date was then a week and a day away, nevertheless things were going along swimmingly, so what could possibly go wrong?

If you’ve read earlier posts of this blog, you’ll know that Pam has a colostomy; and has had so for many years.  The colostomy (in Pam’s case) was achieved by cutting the upper rectum and protruding the upstream end through the abdomen as a ‘stoma’, to which is daily attached to a colostomy bag – for faece collection.  The downstream portion, no longer connected to the digestive system, became Pam’s ‘redundant rectum’.

Now a redundant rectum might well be redundant, but it’s not dead – OK?  Indeed, it still exudes secretions and proceeds to digest them.  After a few months, this mass needs to be emptied using a thing called a ‘mini enema’ and what is delivered is virtually identical to faeces, but who cares?  However in 2009, the three monthly routine suddenly became a two weekly one and quickly happening at even a much more rapid rate.  I was alarmed and subsequently the medicos found an adenocarcinoma (cancer) causing the over-production.

This cancer was magnificently dealt with by Dr Kevin Chambers and totally removed – leaving a much shorter rectum; perhaps just 10 – 14cm long or even less.  Nevertheless, this shorter length quickly settled down to about the same rate of output production as did its original length, prior to the adenocarcinoma. 

Last Saturday week, Pam asked for a mini enema (as she could feel it becoming an issue) and I went ahead noting that the previous one was two months ago.  However, though the coming week, more output was dumped (into Pam’s panty-pad) and this happened twice.  Then, during Pam’s Saturday shower (Saturday just gone), she inadvertently dumped a fair volume onto the shower recess floor – no drama, just surprising.  How much had I not gotten rid of the previous Saturday, I wondered.  So I gave her a second mini enema – and the output was alarming.  It was about the same volume as that on the previous Saturday.

By Monday morning, I was curious and so gave Pammy a third mini enema – and got another similar result and so by that evening I was getting very worried.  I called the ambulance, hoping to have Pam examined for (and yet hopefully not) yet another adenocarcinoma.

The two ambulance staff were very empathetic and explained that if I could get Pam to our own GP, it would be far better than taking her to A & E, as that was currently ‘a madhouse tonight’.  When I told them that I already had an appointment in place re the medication document, they implored me to take Pam along too – and get Dr Bob’s point of view.

I eventually retired to bed that night (just two nights ago – I’m writing this bit on Wednesday) semi-convinced that our holiday was on the rocks and that my darling frail wifey would have to undergo yet another massive operation that could possibly kill her.

And so, yesterday came and along to Dr Bob’s we went.  Dr Bob looked up Pam’s history and found that just last year, she had been tested by Mr Chambers and while found to have an inflamed zone within her redundant rectum, there was NO cancer to be found.

(Apparently, that test and result had been totally forgotten by me – but in fairness to myself, I say the symptoms were way too familiar.)

Dr Bob concluded that the inflamed zone might be playing up, causing the problematic over-production and that a course of Predsol suppositories would probably ease the situation, but otherwise there was no need to cancel anything, holiday-wise.

Beauty, I thought – but strangely I remembered seeing some suppositories sitting in Pam’s bedside widget container.  I wondered if these were they.  Anyway, I picked the prescription and, sure enough, they were the same as previously.  The prescription contained 30 suppositories, but what remained with Pam’s bedside widgets were only 3 in number.  Neither Pam nor I can remember why she had previously been on a Predsol course, but we both vaguely remember a ‘suppository routine’, now long gone.

Last night, I looked at the form I'd given the good doctor and noticed a pocket therein to place a picture of Pam.  This is the one I picked...

...which is pretty recent, being taken on 13/02/2013.

Anyway, all’s well once again and so, come Monday week, we’ll be off! 

Pammy by plane, me by car.  Eee-har!

Ah, the delight!  Now it's Friday 26th July as I type this...  After a re-read of the above it occurred to me that I neglected to mention a surprisingly fortunate consequence of the arbitrarily chosen holiday dates.

Pam's loving mother, Mary Austin, turns 90 years of age on Wednesday, 7th August - right in the middle of the chosen week away.  We even have time (on the following Saturday) for a birthday party with about 95% of the family to be in attendance.  So that's a bit of a plus, don't you think?  I should point out that the venue for the party is still an open question - Pam's poor mum had a fall a week or two ago and broke her hip.  She is currently in a rehab facility.  Wherever she happens to be on the 10th is, no doubt, where the party will be!

 

Headaches and Stroke effects

It has been a few months since the last input to this blog, but my lovely Pammy still strives to be happy and satisfied with her situation.  How she manages this ceaselessly amazes me, for those things which have developed to negatively affect her are apparently failing to do so.

Pam had a stroke in 2009 as a consequence of pneumonia following a common cold - this is referred to in detail elsewhere on this blog,  However, the stroke has affected the muscles on her left side, such that her left arm and hand are now very stiff and apparently difficult to enable via physical therapy.  In addition, Pam's head is strongly inclined to tip sideways, almost to rest on her left shoulder and is now almost impossible for one to tip it 'the other way'.

To counter this, when Pam is bedded each day (at 1:30pm) I have taken to tipping her body toward her right side by using cushions under her left side.  In this way, gravity tends to centralise her dear head - more permanently, I hope.  Here's the idea...

 

 

The yellow cushion (a stiff pillow) supports her shoulder and upper back.  Its effect is enhanced by the use of a rolled-up towel between it and her pink pillow.  That her upper torso inclines to the right and even with the bullying effect of the towel, Pam still declares that she is comfortable and happily stays this way until the following morning - when I get her up.  Now ask me why I love her!  Gravity is the weakest force known to science and yet here it does some gentle good.

 

Another antagonism has recently come along to attempt to give Pam grief - in the form of a recurrent headache.  I don't know what causes this - and my first thought was to the torturous gravity effort.  However, when returned to a tip-less state and given time for it to settle down, the headaches remained.

 

Two Panadol tablets 'might' give relief, but one Panadine Forte certainly does, but the codeine therein tends to constipate her bowel - so I'm between a rock and a hard place.  For some reason, Pam doesn't want to go to the doctors 'just for that'.  (That's an opinion I might eventually overrule.)

 

 

A change...

 

The arrangement as described above was tolerated by Pam for about 14 days (although I only told you about it yesterday), but today Pam announced that the yellow cushion, which was tilting her upper torso, was beginning to cause cramps in her neck.

 

Eek! The last thing I want to do is to hurt Pam and as you can see above, I have been uncomfortable about the 'bullying' towel.  Well!  It's the bullying yellow cushion that suddenly got the flick. 

 

Pam now lies somewhat flatter on her back with just the arrangement of the two pillows supporting her buttocks (to solve a pressure-sore issue) giving her hips a slight tilt to the right.  This has been the case for the last goodness-knows-how-long but the recently 'falsely damned' rolled towel remains as of half an hour ago and after a few days I'll supply a photo of whatever consequents from the missing yellow pillow.  It's a matter of time, but Pam is once again comfortable which is the major issue and yet the experimentation nevertheless continues...

 

What else can I do - hmm? 

Who said "If anything can go wrong etc"?

Last night, I wrote wrote this...

"To the appropriate RAH medical professionals re Pam Fiesley’s dislodged PEG tube,

When Pam came home some days after the insertion of her new Jejunum PEG tube, I found the tube ridiculously long as it was getting caught regularly, because of its length, around Pam’s abdomen and elsewhere during the normal manipulations of her, needed for her washing, dressing and lifter-sling implementations.

I eventually cut it to a reasonable length by removing 51cm off its original length, but did so only when I had determined that it was just a simple tube – not a tube within a tube as was the former stomach PEG.

Given that the previous tube allowed for a position-locking water-filled balloon as well as a separate feeding tube, it had me wondering how this new Jejunum PEG was being locked in place.  I did notice that originally a single stitch into Pam’s abdomen was apparently holding it in place, but it was only a day or so after that, that the attachment failed.  It wasn’t too many days later still that I noticed that that very suture thread wrapped around the tube was now about 1cm away from Pam’s skin – ie 1cm of the PEG tube had come out.

Pam’s wound site was being daily dressed by a visiting nurse and I asked her if she could please determine for me how this PEG tube was supposedly fixed in place, as it didn’t really seem to be.  Nevertheless, it still functioned as it should and the 1cm of exposed tube didn’t appear to get any worse.  Unfortunately the nurse didn’t get back to me re that inquiry.

This morning, when I disconnected Pam’s PEG feed equipment, the newish (3-week old) PEG tube seemed as it had for many days – unsurprising; but by the time I had Pam washed, dressed, lifted and transported to her lounge chair, the PEG tube had completely dislodged and I only noticed this when I reached under Pam’s nighty to find and expose the PEG nozzle ready for Pam’s 9:00am medication and hydration flush.  I found instead, that I had the entire tube in my hand.

At least I could now see at once what had been holding this tube in place – nothing whatsoever!  When I think about it, it surprises me that it actually stayed in place for the 3 weeks and 2 days.

Pam is extremely frail and the anaesthetic required for the initial insertion of her PEG tube was highly dangerous and life-threatening as it was then explained to me, so with respect, wouldn’t it have been reasonable to ensure that the tube was securely and permanently positioned, first time around?

I now politely beg you to use a new PEG tube with a better designed securing method.

Yours sincerely,

Eric Fiesley."

I gave it to Pam an hour ago to take to Adelaide as she is getting air-ambulanced back there to have another PEG tube fitted. Since writing that letter however, I have been giving thought as to what purpose that absurd length of PEG tube might have been used for, given I have now found out, the hard way, that there was nothing holding the tube in place.  I reasoned that the extra length could have perhaps been coiled and stuck to Pam’s abdomen with tape, leaving just a reasonable length for normal use.  This coil would certainly protect the entry point from the traumas that the nozzle-end gets in day-to-day use

However, when I took Pam back into my care, there was no coil – just ¾ of a meter of narrow rubber tube which (as I mentioned in the above letter) would get wrapped around Pam, her pillows, her leg – you name it – and regularly pull at the entry point.  I figured that there must be some sort of locking mechanism in place and that this ‘catching’ was needlessly testing it out and so I shortened it.  Nobody had explained why it was so long and, more importantly, that there was absolutely no locking mechanism in place.  Given the latter information, I might have reasoned that the additional length was for coil-buffering.  I dare say, I’ll find out in the next day or so if they choose to realise at last that proper communication is a good idea.

Here is a picture of the PEG tube that came away. It was sitting on a Mildura Base Hospital bench when I took the picture (they wanted to keep it, for some reason).  It would seem at first site that the 'T" piece which would have been in Pam's jejunum, would have been ample as a locking device, but sadly it’s nothing of the sort.

It’s made of the same soft rubber as the rest of the PEG tube, and has also been split completely along its length to allow an even distribution of the feed.  This slit however, makes it even more flimsy and entirely useless as a locking device.  Remember, the tube used to be 51cm (duh, that’s over ½ a metre) longer – and maybe I should have left it so.  Who knows?  As I said above, I dare say I'll soon find out!


A couple of days have come and gone, and there's quite a bit to add...

I am now writing this on Saturday, 30th March and yesterday (Good Friday) Pam arrived back home by ambulance (via an ultra-short pause at MBH following the flight) and was in my care at 3pm.  This was the scheduled time for one of Pam's 200ml hydration flushes and this particular one is not medicated.  All went well although it was annoying that the input nozzle didn’t seem to be designed for the syringes I use for hydration.  It was quite ‘loose’.

5pm came, and another (this time medicated) hydration flush was uneventful as was the 7pm medicated flush.  But at 9pm when I gave Pam a 50ml pre-flush of Nexium anti-nausea, prior to her 9:30 PEG feed, the tube promptly blocked and no amount of effort would overcome the blockage.  There was no point attempting to pump her nightly PEG feed because this blockage seemed to be meaning business – and so I rang 000 for an ambulance.

Pam was taken to Mildura Base Hospital (MBH) and they spent ages trying to unblock the tube.  I reckoned that it was probably the Nexium, dissolved as it was to free the tiny time-release capsules and it was them, thought I, that had caused the blockage.  I later learned some confirming input in that the gauge of this PEG is significantly less than the Stomach PEG that it replaced and the reason that it hadn’t blocked with Nexium prior to my doing it was that the hospital staff of both hospitals, were crushing the Nexium tablets as they did with every other tableted med.  This may have avoided the potential blockage, but was a definite no-no according to the instructions written on the packet.  (Hospital staff personnel are seemingly oblivious to instructions on tablet packs, probably because they only deal with the foils already taken from the packs, and a tablet is a tablet.)  I have also discovered since beginning this paragraph the gauge of the blocked PEG is vastly smaller than the one it replaced i.e. the one that fell out.

The yellow tube is from the tube that fell out - simple single tube.  The bluey-grey one (i.e. the one that blocked yesterday) is compound, but clearly not a tube-within-a-tube as was the stomach PEG.  Here, the tiny hole is for the locking balloon and the larger of the two is for food flow.  Compare this diameter with that of the yellow.  No wonder it blocked, in hindsight.

This has me wondering about the new one fitted today.  It's different in appearance, but this sort of a test is not appropriate ... yet.

It was getting late and the ambulance officers offered to take Pam home to bed rather than leave her on a trolley all night as the hospital had no bed space.  So at 2:50am this morning, I put Pam to bed.  The ambulance guys then recommended that I make an early booking (8am) so that they could get Pam back to the MBH at a reasonable time to either succeed with the unblocking or to Air Ambulance Pam back to Adelaide for a new PEG.

So I got up at 7:30 this morning, showered and shaved and did what I was told.

Pam was in the ambulance at 8:30am and home again at 4pm – seven and a half hours it took, to decide that the old PEG was stuffed and had to be taken out.  A new one subsequently fitted (without Pam going to Adelaide) and eventually X-rayed to check for correct insertion.  The minutes (in bulk) ticked by and at long last we were given the nod that the radiologist was satisfied that the PEG tube was indeed inside Pam’s Jejunum.

Whacko!  I applied the fancy dressing over the PEG site, rather than wait any longer – while the staff booked the ambulance to take Pam home.  That was at about 2:30pm and I decided to dash home to warm the place up and prepare for Pam’s alleged immanent return.  As I said – at 4pm, she turned up.  (Not quite as immanent as I’d hoped for!)

Pam’s now happy and hydrated – she had had nothing of the sort since 7pm the night before.  As I write this, Pam is watching ‘Packed to the Rafters’ which I recorded for her.

It’s occurred to me how intuitively appropriate is the main title of this blog – but I fear that most of the subsequent postings will be of a similar ilk.

Pam was happy to be home and the old routines quickly settled into place, but within a day or two it seemed that Pam’s colostomy bag was no longer getting any input.  A day or two later, Pam noticed that her colostomy base-plate was beginning to lift and so I replaced it; but for the first time ever, the bag that had been attached was still pristine and so I clipped it back on. (!)

The next day, still nothing – the day following, Friday 5th April, more of the same:  I had lost count of how many days it had been with a perfectly pristine bag.  These days, the upper surface of the bags is transparent and I could see l Pam’s stoma within, still clean as a whistle.  But I woke at 4:30am Saturday (yesterday) and the gentle clicking of the feed pump got me very disturbed.  I figured there was upwards of 2,500ml of PEG food inside of Pam - and nothing was emerging.  With the pump still active, it was just getting to be a worse situation, I reasoned.  I even began to fret that the PEG might actually never have been put into Pam’s jejunum, but might instead be simply emptying into Pams abdomen space;  so I called 000 for an ambulance.

I think the ambulance staff was surprised at the cleanliness of the colostomy and the approximate number of days for which that had been the case and so happily took Pam to the Base Hospital to see what could be done.

When I got there, I was quickly relieved to learn that if the food had indeed been emptying into Pam’s abdomen space, it would have been painful – but it wasn’t.  An X-ray confirmed that the PEG tube was where it was supposed to be and that Pam was (merely) terribly constipated.

Pam was admitted to Ward 3 (room 17), stayed the night at the Base and I volunteered to look after many of the hydration flushes, four of them being medicated and also Pam’s overnight PEG feed.  I get to bring her back home after lunch today, Sunday 7th.

What’s next, I wonder?

A significant change? Oh, I do so hope!

Pam has been in hospital since early Tuesday and it’ll soon be Saturday.  Pam has been struggling to recover from her latest bout of aspirational pneumonia and I’m getting quite emotional as to what I have come to accept is her most dangerous daily activity – the nightly 10.5hr duration PEG feed.

Pam’s current PEG tube is badly worn and needs replacement, but there is talk of moving her PEG entry point so that the feed directly enters her small intestine, not her stomach.  This may end the risk of her random, potentially fatal, regurgitations and may well give her a longer life. 

I am keen on this happening in spite of the 'minor' risks (I might be wrong as to the implied insignificance albeit being possibly very significant) in imposing the procedure to her poor, frail and pneumonic body, but at least can her worn out PEG tube please be replaced if nought else is safe?

Nah, I'll yeild to the qualified medicos to decide – the emotional, ever hopeful nearest and loving relly (me) can come second – and I’ll wear it.

Here's how Pam looked today, Friday...

And now the day after...

I owe my eternal gratitude to the miracle workers at the Mildura Base Hospital.  Nevertheless, I'm hoping for a new PEG tube for Pam before she comes home - supposedly on Monday.  (It looks like being a dashed hope BTW.)

It's now Sunday 24th, 12:40pm.  Here's my Pammy with no longer the need of oxygen support...

Well, here it is Monday 25th.  This morning I took Pam's electric wheelchair to the hospital in which to bring her home, only to learn that she wasn't being discharged - she was instead being kept there until she had her PEG-site relocated (to her small intestine).  Apparently it will take a couple of days to determine if it can be done here or does she perhaps need to be air-ambulanced to Adelaide to have it done at Flinders Medical Centre?  Only a surgeon can decide - I'm over the moon at this potentially meaning the end of Pam's regurgitations, subsequent pneumonias and associated pressure-sores due to the required 10.5hr PEG-feed sitting posture, adopted to counter the regurgitation danger.

Only time will tell...

It's now Thursday 28th and time has indeed told me!

Pam was, yesterday, flown by Air Ambulance to the Royal Adelaide Hospital (not Flinders) for her PEG tube to be relocated from her stomach to her mid-jejunum (approximately middle of the small intestine).  The procedure is fairly common as I understand, but in Pam’s case, it is somewhat more complicated because of her frail condition.

I am optimistically encouraging all the hospital staff members who are phoning me for confirmation that the procedure is indeed to take place; with the knowledge that to refuse would be damning to Pam’s future; while realising that the procedure itself, involving a general anaesthetic, may well be even more problematic.  I am of the view that Pam will be back in a couple of days, so I’m staying put.  The Anaesthetist, Dr Lowry and the (student) Dietician, Erin Healy spent ages talking to me on my mobile and I thank them so very much for their empathy and kindness.

I’ll know; come 5pm tomorrow, if or not my optimism is justified.  If so, Pam will have a brand new PEG tube – so that’s a plus!  (…one of many plusses, BTW.)

One of the beaut things about the Royal Adelaide Hospital is that it's in the same city as our eldest daughter Sharon.  She took these pictures just prior to Pam's procedure.

 

Pam's obviously pleased to see Sharon...

I was told in the morning of Friday, 01/03/2013 that Pam's procedure would be done somewhere between 3pm and 7pm, but as it turned out, it was a nice and early 1:30pm.  It was all over before 5pm and I was extremely pleased that evidently all went well.  So off to the Farmer's Market went I to happily play euphonium with the band.

Here is a picture, taken by Sharon, as soon as Pam was settled back in her ward...

 

Pam was soon told that her oxygen saturations were down (a bit), so unsurprisingly, the efficiency of the oxygen supply was enhanced.  Pam still manages to smile however...

Pam's serene attitude has her being 'loved' by everyone who encounters her at the Royal Adelaide. I am indeed a lucky bloke to have her as mine.

I wonder when she will be returned to Mildura Base Hospital.  It's another "time will tell" thing, I suppose.

Well, there was more to Pam's return than I expected.  I was told that she would be coming home on Wednesday 6th and Sharon kept me in touch with Pam's progress on that score.  I was eventually told that Pam had been taken to the Departure Lounge at around 11am SA time, I was soon after told that the ambulance had taken her to the airport.

I did some estimated calculations and reckoned if I got to the part of MBH where the ambulance unloads, at about 2:00 - 2:30pm., I could organise it so that I was the first person Pam would see when the Ambos opened the back door of their ambulance.  Yep, I thought that would be a nice touch, so I was there at 1:45, waiting in the heat, outside the Ambulance dept., next to the Emergency dept.

After 1½ hours I was still waiting, but then I was told that the Air Ambulance booking sheet hadn’t included Pam and that she’d been taken back to RAH as a consequence.

I wasn’t at all pleased, but by 1pm Thursday 7^th it was a case of déjà vu.  Yes, Pam had just been taken, once again, to the Adelaide Airport.  And so, by 2:45pm I was back outside the Ambulance dept., but being cleaver enough to spend a lot of waiting time in the Emergency dept., under the air conditioner – my head was sunburnt from the previous day.

Pam didn’t arrive and I wondered if she’d been taken back yet again.  A nurse rang and assured me that that hadn’t happened, but they had no idea where Pam was.

It 4pm I got word from the Ward 3 staff that Pam’s ETA was 4:50pm.  I thought “Bugger”, but it was under an hour away.  I had earlier bought a bottle of Coke from the canteen for $4, and thought that was a rip-off, nevertheless I went back and purchased a carton of chocolate milk.  Guess what - $4 again.  (I was later told that a nearby shop attached to Tri-Star medicos (next to the hospital) charge $7.50 for a pie and sauce!)  Anyway the 50 minutes were soon exhausted and still there was no sign of Pam.  An hour later, she arrived.  I learned that she’d come via Mt. Gambier, as another patient had to be dropped off there,

Pam looked lovely when the Ambos opened back doors.  They had told Pam that I had been waiting for a long time.  Well I had been – 4½ hours in total, but seeing Pam again was worth every second of the wait – believe me!

Here's my lovely Pammy just prior to leaving Royal Adelaide Hospital, one of many taken by Sharon.

It's now Monday, 11th March and I brought a happy Pam home this morning.  She was thrilled to be home, but wanted to go straight to bed instead of spending time in the lounge.  Given what she's been through, I'm not surprised.

I was surprised though, at the length of her new PEG tube.  Earlier I had been even more surprised when, in Adelaide RAH, her old PEG tube actually fell out, apparently of its own accord and was replaced with a new one (my minimalist hope, as you might recall).  Indeed, for a while, Pam had two new PEG tubes, the one into her old site, to her stomach and the other into her new site, to her jejunum.  I remember asking if this now-redundant tube could be used to occasionally drain Pam’s stomach fluids, which might otherwise still be a cause of future regurgitations.  I was told that it couldn’t be used for such and so I begged them to remove it, because I could foresee me and others inadvertently connecting Pam’s PEG feed to the wrong tube.  If it can happen, it’s only a matter of time before it does.

Anyway, getting back to the length of this new jejunum PEG tube (and PEG is probably the wrong term now BTW), I reckon it needed shortening, but figured that that might be impossible because the old tube was a tube within a tube – the inner for the food passage, the outer for water to inflate the holding-balloon that stops it inadvertently dislodging.  But Pam came home Monday and today is Wednesday; Pam, me and others having suffered the consequences of this ridiculously long PEG tube now for too long, so this morning I experimented and quickly satisfied myself that this skinny tube was a simple tube and not a tube-inside-tube, and confidently removed the end socket and cut 51cm from its length, bringing it back to about the same length as the old PEG tube.  Half a metre – gone!

Of course this begs the question; what stops this tube from popping out?  One day, I’ll probably ask someone – in the meantime the shorter length works just fine.