Saturday, November 2, 2013
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.
Wednesday, September 25, 2013
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...
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).
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!
Monday, September 16, 2013
Anyway, here goes…
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?
Friday, August 16, 2013
Monday 5th 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 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...
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) 2nd 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…
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!
Friday, August 2, 2013
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...
Tuesday, July 23, 2013
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.
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.
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!
Tuesday, June 11, 2013
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...
Monday, March 25, 2013
"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.
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.
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!)
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.
Friday, February 22, 2013
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 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 7th 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.
Wednesday, February 20, 2013
When I got to Room 20, Ward 3, there was Pam rather 2nd hand and still with the hydrating ventialtion device up her nose. I thought it was worth a picture, so here's a rather sick Pam still managing a smile...
Wednesday, February 13, 2013
For historical reasons (concerning another mob that I used to help out), my Wednesday respite leave is still very generous. I am covered from 10am till noon by TRIO Support and from noon to 1:30pm by Mildura Council’s Personal Care Assistant Service (PCA). Today however, I received a call to my mobile phone at 11:55am from Andria (of TRIO Support). Andria told me how Pam was complaining about wetting herself.
I thought quickly – mechanical problem, catheter not draining because of position or by being blocked – so I suggested that she (Andria) wriggle the suprapubic catheter, suprapubically in Pam’s suprapubic zone and hopefully so by clear the mechanical issue. If that didn’t work, I said, put Pam back to bed with a bluey under her and I’ll sort it out when I get home.
No sooner had I hung up, I recalled that Andria was only there until noon, so I drove back home to take over (I don’t think the Council’s PCA are supposed to do anything like putting Pam to bed). When I got home, I was pleased to see that Andria had gone – I think she had another client to go to anyway – and I had Pam setup in bed within 15 minutes. Pam’s a good girl; the catheter wriggling wouldn’t have tickled, but it apparently had the desired effect. The only negative was that Pam was sent to bed more than an hour prior to the norm – but she didn’t mind. Neither did I – I still had an hour of respite leave, so back down town I went! When I got home, Pam is pictured here pleased to see me.