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
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!)
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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
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...
...it 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.