Saturday, November 29, 2014

A Bladder Infection - or Not?

On Friday 21st, Pam reported a problem with her "water-works".  Instead of all her urine going into the leg-bag via the suprapubic catheter, she felt there was quite a bit being passed urethrally into the Tena (brand) pad in her undies.  I have been in the habit of keeping a pad there, just in case this happened.  By Monday it had become a serious issue if, for no other reason, we were suddenly going through 6 or 8 pads per day (instead of just one).

In the past, this event was always caused by a bladder infection and with antibiotics, was soon rectified.  So I took a urine sample to Dr Meyer and his nurse tested it as being positive to infection.  Dr Meyer prescribed Cephalexin antibiotics for the mean time and forwarded the urine sample to a pathology lab for thorough testing.

I immediately started Pam on the “Keflex” (as they’re also known - and as you may already have read in earlier posts), but the problem continued unabated.  When I rung Dr Meyer for the test result, two days ago (Thursday 27th), he told me that there was no infection found (!)

No infection?  Well, a test is a test and so I stopped giving Pam any more Keflex – what was the point?

As I explained in the previous post, Pam was getting the District Nurse every Tuesday and Friday, so yesterday morning, when Sarah came to give respite care, I asked her to phone me if the District Nurse came while I was out, because I needed to ask her about Pam’s urine problem.  So down town I went, intending firstly to get my daily wonderful Grande Latte from Mocha Mecca's in 8th St.  Parking was difficult, but I got one in Langtree Ave about halfway down to 7th St. and walked back for my coffee.  I ordered and payed for my Grrrrrrande Latte, set myself down at a table and commenced reading the complementary Sunraysia Daily.  I hadn’t read much when my mobile phone rang – and sure enough, Sarah was telling me that the District Nurse had indeed arrived.

Fortuitously, the Latte had not yet been made so as I left they sweetly said they still owed me one and I said “I’ll be back”.  The nurse was still there when I got home and she heard my story and proceeded to ring the Continence Nurse.  No luck unfortunately, so Sarah offered to take notes if she did manage later to get in contact and I headed off back into town - for my coffee from the wonderful staff at Mocha Mecca's, for starters.

When I got home, I learned that the nurse had contacted Dr Meyer – and he suggested I use a larger-gauged catheter.  Beauty, I thought – Pam’s PEG tubes are bigger (I think), so I'll use those instead - if I can squeeze them into Pam.  I knew one was 12-gauge and the other, 14-gauge – sadly, the 14-gauge were the urine catheters.  Darn!  I’d run out of respite cover, so I’ll have to put up with Pam’s wee problem (and so will she) until Monday at least.  Anyway, yesterday afternoon, just in case it was the suprapubic catheter that was causing the problem, even though I had only replaced it on Saturday 22nd as it was due to be changed anyway (after being in for 7 weeks) and Pam’s problem had already started, I pulled it out and replaced it.  On inspection, there was nothing wrong with the one I'd just extracted, so this new one won’t be any different, and guess what? - It’s not!  What a waste of a good catheter!

Now I have to wait until Monday to do anything and Murphy’s Law states Pam’s problem will get worse in the meantime.  (Bugger Murphy!)

If my email address doesn't appear at the top (as it does on my PC), please contact me at if you have any comments to make (good or bad).  It seems that requires you to be a member of it, in order to comment otherwise.

I wrote that last bit on Saturday 29th November and here it is now Wednesday, 3rd December and I have to say that I'm confused.  Murphy must've read what I wrote because almost as soon as I pressed 'Post', Pam's urine problem ceased.  Whilst I was somewhat relieved, I wasn't convinced it was going to last long because nothing had been done to make it come good.  Sure enough, on Sunday night, urethral flow once again resumed.  Many more Tena pads were filled, but Monday night she came good again and that lasted until I came home from band practise last night to discover that Pam's pad needed changing yet again.

It comes good, goes bad, comes good, and so on; without any apparent cause.  Pam's Case Manager from Bendigo Health, Peta Webber, suggested the possibility of a real bladder infection happening this time - if indeed it wasn't there from the very beginning and that I could/should get another urine test done.  I agreed, hoping an infection could indeed be found - that would explain the urine problem - and so I went to Dr Meyer's clinic to see if he could be asked to send Barratt and Smith Pathologists a referral for a urine test, and then I walked to Barrett and Smiths to tell 'em what I'd done and that I'd be back tomorrow with a urine sample.  So here's hoping...

Well, here I am a month and a bit later (19/01/15), apologising for not updating this post sooner.

The second urine test also turned out to be clear, so out of desperation, I contacted Kath Modoo (Mildura Base Hospital's continence nurse - mentioned above) to see if I could try the larger diameter catheter - which was earlier suggested, as also mentioned above.  Kath brought out a 16-gauge catheter for me to try and although I had visions of it being too big to fit (into Pam's surgically-made openings), in fact it went in quite easily.  This catheter is opaque and looks like it means business.  Well, the good news is, that for all December and more than half of January, right up until now (at least), my darling Pammy hasn't urinated urethrally at all!

I have still got twenty-seven 14-gauge catheters that I now won't be using and because I've written 'Urine' on each one's envelope (so that I couldn't confuse them with the PEG-tube catheters), they're probably only giveaway items at best - all still sterile, sealed and good.

Sunday, November 9, 2014

Pressure Sores

Before it gets too far away from when it was noticed (by me), I'd better now mention that Pam returned home to Mildura on the 13th October with many open pressure sores (also called bedsores) on her lower legs, ankles and feet.  There was also one beginning to form on her right elbow.
On the very day of our return, I noticed a plaster bandage having been applied to her right ankle - but immediately above it, there was a huge hole - no doubt painful for Pam - that MUST have been there when the ankle was bandaged, but wasn't treated... makes me wonder!
Anyway, I haven't even been able to see all of the wounds - and when I saw this one, I called the District Nurse straight away to please come and check them all, however many there were.  The District Nurses now come every Tuesday and Friday - and I have only so far seen one other sore at the bottom of Pam's left heel.  It's healing now but is still the size of a 2-cent coin.
Apparently, Pam knew she was developing bed sores while she was at Westhaven, but she didn't tell me at the time because she didn't think they were "that bad".  Pam has SIX pressure sores, but they're all now bandaged and so far, I've only seen two.
I'm a bit annoyed!  Pam had no such sores when she left for her holiday.  But not only did she get the bedsores, she had a nightie taken (presumably for washing, even though that was my job), and was never returned.  A simple $6 tube of lip-balm also went missing and I had to go and buy another one.
Now, my poor Pammy feels as though she may not be game enough to go away again.  These pressure sores may take months to heel, so I'm afraid I feel a bit the same way.
Well, that was yesterday.  This morning I took this picture of what Pam (and I) have to put up with for the next month or two.  These 'boots' were fitted to Pam just days after we arrived home - almost a month ago...
I change Pam's knickers every morning - you can imagine the fun I have getting them over these (without hurting Pam).  Pam was only at Westhaven for six full days - yep, SIX days only!
This morning (11th) it occurred to me that MS itself may have attenuated the intensity of Pam's perception of pain.  This may have something to do with her not mentioning it to me.  MS stops her from seeing her injuries and probably muffles and confuses the pain signals as perceived by her brain.  I'll make further enquiries as to this...
I have just gotten Pam out of bed and showed her this blog on the way to her lounge chair.  In regard of the theory expressed in the previous paragraph, Pam announced that her legs are both numb - well nearly numb; she can still feel SOME pain.  So it seems that in this bizarre way, MS may well be, at long last, useful (!)
It's now 2:55pm on the 11th and the District Nurse has just left having treated Pam's bedsores yet again.  I helped her and at last saw all six.  Most are healing well and only two (the ones in the top photograph) now still require iodine antibiotic.ointment.
I'm starting to take all this as a nasty learning experience.  In the normal run of things, I take hard-learned steps to ensure Pam doesn't get bedsores.  I clearly erred in thinking that that was going to be the case with the staff at Westhaven - that's a big organisation, with lots of different people involving themselves in Pam-care.  But I'd say many of them were acting ill-informed because communication between them was clearly insufficient.  I visited Pam every day we were there, sometimes several times per day - but it didn't even once occur to me to actively look for bedsores.  Poor Pam couldn't know she was getting them because of her MS and I should have looked for them.
If we do any trips away again, and if it's to Melbourne, I'd consider Westhaven even yet, because Pam's mother is resident there - but I'd have to get their agreement that I would be allowed to inspect Pam while she's in their care and that they act on any criticisms/suggestions I might make.

Sunday, October 19, 2014

A holiday with a purpose

Our dear Dr Meyer ordered, at my request, an air-ambulance-to-Melbourne respite holiday.  I was to take everything that Pam couldn't (and she was just allowed 5kg excess), so I had a lot to take including the electric wheelchair and the food pump and stand.  I made a list of all the things required and that list filled two sides of a typed sheet.  It had two columns for ticking, headed Out and In, because I wanted to bring back everything I took.

The holiday was scheduled for Monday, 6th October and returning the following Monday 13th.  When I found out the time Pam was to be picked up, I requested TRIO Support to provide a carer to wait with Pam and lock up afterwards, so I could get away earlier.  I finished up leaving at 7:45am and Pam was picked up by ambulance from home at 8:30am.  Her trip took 3hrs, mine 5hr 50mins to Westhaven Community Aged Care facility in Pickett St West Footscray.  There was a bit of careful selecting and good fortune re the availability of a Respite Room because Pam's mother resides at Westhaven (!)

Of course there was another reason for this holiday and that was to finally get to see and hold our dear new grandson, baby Teo, and at last we could.  (We couldn't get the Westhaven Respite Room available any earlier than that week, even thought Teo was born on 21st August.)  Here's a lovely picture of Pam holding little Teo with his big sister Ellie watching on...

Pictures like this make it all the more satisfying for going to all the trouble of getting there (and back).

I stayed at my daughter Jeni and her husband George's place in Taylors Lakes and travelled daily to see Pam at Westhaven.  In busy traffic, that trip took well over one hour and at off-peak times, about one hour, and I got used to this - but when I left Taylors Lakes at 4am to come home via Westhaven (to pickup her equipment), that trip just took 20 minutes - virtually no traffic and green traffic lights all the way except for two spots.

However, I'm jumping ahead of myself.  On Wednesday 8th, I also drove to Geelong to have a drink with my friend Graeme Daly at Jokers on Ryrie.  After that, I drove to Lara to be with my sister-in-law, Dorothy and her daughter, Kylie and grandson Jarrod to join me in sprinkling my late brother Ted's ashes over the You Yangs (a mountain range near Lara) where Ted, in his healthier days would daily drive himself to a particular spot there and have a beer or two.  Dorothy, Kylie and I took turns in sprinkling his ashes and Jarrod generously poured a stubby of Ted's favourite beer thereupon.


Pictured is Dorothy doing the deed for her poor departed husband...

This was one of brother Ted's favorite spots - the view is spectacular and you can almost make out Melbourne on the horizon.

We all went back to Mark and Kylie's for dinner - and then I drove back to Taylors Lakes, via Westhaven.  And that was Wednesday, done and dusted.  (Pardon the pun!)

Pam was able to see her mum every day, either by the Westhaven staff tranferring Pam into a recliner chair and taking her down to the ground floor (she was on the 1st floor for her stay) to where her mum was; or otherwise Pam's sister, Val, would bring her mum up to see Pam.  It kept them both happy.  On Tuesday and Saturday, I drove Pam to Tailors Lakes to see Jeni and George (if he wasn't at work) and of course - baby Teo!

(I should explain, it's not Pam's hair hanging over her shoulders - it's a shoulder brace (part of the wheelchair).)

Thursday, September 11, 2014

It Takes a Happy Addition & My Stuffup to Add to Pam's Story

Pam has been absolutely well since the last post (OK, 'well' in the sense that apart from the usual bladder infections, pressure sores, etc. etc.), so it has been quite a while since anything was significant enough to write about.

On the 21st August, the VERY first boy child was born into the 'Fiesley' family - Pam had a sister, no brothers, we had two girls, no boys; our girls have had 3 girls (two for Sharon and Neal and one for Jeni and George) - but at 5:30pm on the 21st August, baby Teo was born to Jeni and George.

So that's a good start to the evening...

At 9:20pm on August 21st. however, I had a little fall which caused me to hurt my left wrist.  It was a motorbike thing, but I thought I was OK and rode the bike home after the fall, using my sore left hand to work the clutch, without knowing my wrist was broken.  It only took two hours before the wrist swelling and the pain caused me to call an ambulance in order to have something done about it (my wrist was too sore to even consider driving to hospital).

It took no more than a few hours for them to decide that I'd broken my scaphoid bone - an easily (and commonly) broken bone situated behind the thumb.  I was given a plaster cast; a few hours later another one - and finally, this fibreglass one...
The idea is to keep the thumb stationary, but my fingers (they're folded* in the above pic) can still move.
* My fingers were closed because I was trying to give a rude 'thumb-up' signal to Kevin Hogarth, my photographer.  It could be seen as being sad, but I think not, that I now give that very same signal to everyone I see.  :)
Now I think I hear you ask - what has this to do with Pam?  Well, how can I properly care for her with one and a bit hands? 
The fibreglass cast comes off on the 30th September, the wrist then X-rayed and most likely re-plastered as above for another 6 weeks.  Beats me how I can grin about this, but I did when the above photo was taken and, funnily enough now that three weeks have elapsed, given what I have discovered I can do with my gimpy left hand, I'm still grinning.  So far, for the last four days at least, I've been able to get back to what I usually do getting Pam up for the day (for eg).  Tomorrow (Saturday, as I write this bit), she gets her hair washed under the shower (her only shower for the week) and that'll certainly be a challenge - getting Pam from her bed using a lifter and sling to get her into her shower chair; and then from that via the lifter and sling, back into bed for drying and dressing.  Yep, it'll be a challenge with a sore hand - but that's what Pam-care is all about - and I LOVE it.  And don't forget - I have a new grandson!!!
I want to thank TRIO Support for providing wonderful carers to get Pam up each morning since the accident until I realised I could once again get back to doing it myself.  Mildura is lucky to have TRIO Support Services, I can tell you!

Thursday, March 13, 2014

Orally Disintegrating?

For the first time, only a few days ago, the Ondansetron tablet that I gave Pam, only worked 'minimally'. Whereas, the same tablets would give Pam almost instant relief from nausea, lately it's taken somewhat longer - but this time, the relief was very temporary.

I went to the pharmacy to find out what the next size dose-strength was and learnt it was 8mg (currently Pam is on 4mg). The pharmacist advised that rather than increasing the dose amount, consider a variation as to how it is delivered.

Pam currently has the 4mg tablet dissolved in water and delivered via her PEG tube into her jejunum (middle small intestine).  What the pharmacist was proposing was to make available dissolvable Ondansetron wafers which would be given to Pam under her tongue.  He explained that this would affect a quicker relief and possibly a more intense relief.

I asked Pam as to how she felt about dissolving a wafer in her mouth, but she thought it was potentially a GOOD idea, so I went to see Dr Bob to get a prescription for this new format.  When I picked it up, I noticed (with a smile) that the wording on the prescription was for “Ondansetron 4mg orally disintegrating tablets”, but what I got when I had it filled by the pharmacist was “ONDAZ-ZYDIS WAFER 4MG 10 (ONDANSETRON)”.  The pharmacist (Tim DeBoo) went to some trouble to explain how to remove the tablets from the packaging without disintegrating them.  (Whacko!  They still disintegrate and are indeed tablets, not wafers – even though what is printed on their box is exactly what’s in uppercase above.)

I am yet to find out what it’s like to actually do it, but I dare it’s just a matter of time.  I still have plenty of ordinary tablets and will continue to use them unless Pam’s nausea-needs demand something better.

Sunday, March 2, 2014

Keflex for one thing - or maybe two

Pam is once again producing an unusual amount of output from the remains of her rectum. Since the treatment for the adenocarcinoma (some years ago) the small bit left of her rectum was just 7 – 10cm, nevertheless it still digested its secretions and emitted them about once every 6 or 7 weeks.  These days it’s been once or twice a day causing me to seek our doctor’s advice.  He prescribed Keflex antibiotic – the same recently used for one of Pam’s bladder infections.

What has this to do with the subject heading?  Well at 5am today, Pam asked me to see if I could “push wee”.  Pam urinates via a suprapubic catheter into a leg-bag attached to her right thigh.  From there, whenever she is in bed, it further drains from the leg-gag to an overnight-bag – resting in a bucket hanging from her bottom bed rail.  Occasionally, the drainage to the overnight-bag doesn’t happen and Pam’s leg-bag fills giving uncomfortable back-pressure.  This prompted Pam’s request.  I was being asked to push urine from the leg-bag to the overnight-bag.

Here’s a picture of the hardware that Pam now wears. (Her head is to the left, feet to the right.) You can see the connected feed tube, the suprapubic catheter entry point and the two different-sized nozzles where it connects to the leg-bag. I use the folded tea-towel to keep all these connectors off Pam’s torso skin…

However, the leg-bag was draining satisfactorily, so what was discomforting Pam?  She even declared that she had been “weeing”; meaning urinating urethrally.  Anyway, I returned to my bed and wondered what was going on.  I eventually decided that although it was only about 4 weeks since I changed catheters, this one might be starting to “play up”.  So I got up, collected a 10ml syringe and a 50ml syringe, the later containing some tap-water and returned to Pam.

I used the 10ml syringe to see if the catheter holding-balloon was still inflated – it wasn’t.  So had the catheter begun to dislodge?  I wiggled it farther in (much to Pam’s chagrin) and re-inflated it.  I then used the larger syringe to inject some water up the catheter into Pam’s bladder, to ensure it (the catheter) was not blocked.  It wasn’t.

The small amount of urine collected in Pam’s panty-pad might have been because her catheter had just, very recently, dislodged – and I caught it in time.  All these things, the colostomy bags, the suprapubic catheter and the PEG-feed tube have to work ALL the time, but sadly, they don’t.  Anyway, it was tap-water that I injected into Pam's bladder - but the Keflex should look after THAT, as well.