A Bacterial Infection

I returned from band practise at 10:15pm Tuesday 9th June and Pam was still awake.  She greeted me warmly and I noticed that her voice was different.  She asked me to dry her runny nose with a tissue, which I did and eventually got into bed myself.

Not too much time had elapsed before Pam started coughing, or at least attempting to.  (She cannot cough effectively and this is what caused her pneumonia back in 2009, which very nearly killed her.)  With this in mind, it didn't take much longer before I, in spite of Pam's chagrin, got out of bed and phoned for an ambulance. Whilst they were coming, I dressed and readied myself to welcome them.  The two ambulance ladies very soon decided that Pam was to go to hospital in spite of her objections.  I followed by car.

Pam was kept on a trolley (a comfortable trolley) from 2:15am until a ward bed became available at about 3pm on Wednesday.  She was diagnosed with pneumonia of the left lung and fluid around the right lung.  Not good news at all.

As I write this, it's Thursday 11th June approx. 4:15pm.  Pam is on antibiotics, anti-nausea meds and laxative treatment for constipation allegedly brought on by the codeine in the many Panadine Fortes she's recently been having to combat muscular headaches over the past few days. After a full day's worth of antibiotics, this is how my darling appears...

 

She has several more days in hospital and she wants to come home once more - I want her back too, but we both know where she's better-off for the time being!

 

Now that I have had time to think more clearly, I think it reasonable to give you an understanding of what's involved in having Pam hospitalised...

1. Because Pam is fed overnight with a feed-pump, I had to bring to the ward her Kangaroo-Joey (K-J) pump, its stand and power cord; plug it in and set it up.  The K-J bags/feed tubes and PEJ food that goes into the bags also had to be brought in.  (It used to be called PEG food, but I have just learnt that in Pam's case, with the feed entering her jejunum instead of her stomach, it's now called a PEJ feed.)
2. Bring in Pam's jellybean switch as she cannot operate the hospital's alarm bed-switch.  Fortunately, Pam has been here before and they remember her - and so they put her in a bed where the TV controller/alarm device had previously been fitted with a socket for Pam's jellybean switch connection plug. This jellybean button can be seen in the above picture for Pam to actuate with her chin.
3. The hospital pillow was too firm for Pam, so she is seen in the above picture to be resting on her home bed pillow.
4. The hospital staff need congratulating for remembering Pam and also being aware as to her current needs.  They quickly found for her an alternating pressure mattress almost identical to that which we have at home.

We were given the option of having Pam admitted as either a Public or Private patient.  We chose the former.  So far the only expense has been the rental TV.  I booked it for a week at the pensioner rate of $47.  If you knew Pam, you'd be as happy as me at paying double if it was asked.

 

Well here it is, Friday 12th June, 4pm.  I've been going to the hospital for each of Pam's 9am, 11am, 1pm, 3pm, 5pm, 7pm and 8pm hydration flushes, 4 of which are medicated as well as charging the feed packs with PEJ food and priming the pump each time in readiness for the 8:30pm feed start (which the hospital staff do, 'cos I've gone home by then).  Hospital policy is not to use Webster packs at all - and all of Pam's regular meds are in a Webster pack.  The deal is, I can use the Webster pack and the staff appreciate that because it's a job they won't have to do - and if I didn't do it, the staff would have to requisition the meds from the pharmacy.  It was by mutual agreement that I was to do it, but in order for the staff not mandatorily locking the Webster pack away in between medicated flushes - I was to instead take it home each time.

 

Pam looks like staying in hospital for the weekend but, depending on how she goes, she may be allowed home early next week.  Time will tell...

 

OK, so here it is 1pm Tuesday, June 16th and indeed time DID tell.  All was looking reasonably good until Sunday night, when I was told that Pam's left lung had collapsed (because of pneumonia) and her right lung was surrounded by fluid.  Pam was feeling hot even though her body temperature was normal.  Nevertheless, she was happy.

 

On Monday, however, she was complaining extensively about feeling hot (and sweaty) and she was gasping for breath.  The hospital staff were alarmed by her low blood oxygen saturation, and in addition, she had produced a urine specimen upon admission on the 10th which indicated a bladder e-coli infection which required her to be moved to a private room - because of its resistance to antibiotics.  The private room was an unexpected plus, but I have a feeling we haven't heard the last of the e-coli.

 

By Monday evening Pam was so unwell in trying to breathe that the doctor asked me how much life-preservation did I want the hospital to provide.  That was a death warning as I took it.  Pam and I both said that ICU would only be considered appropriate as long as whatever process it invoked would HELP her to recover - otherwise NO.  The ward had access to a BiPAP machine, which is essentially a pressure pump and that was applied to Pammy.  In addition, she was medicated to affect the fluid on her lung, and while I was there, soon after produced 150ml of clear water-like urine as a consequence. 

 

The BiPAP machine was to inflate her collapsed lung - an hour later, it was removed to see if Pam could keep up her oxygen.  This she managed for an hour and so went home.

This morning, I went to that private room, to find it vacant and all Pam's belongings gone.  A nurse noticed my angst and asked if I had been telephoned last night to explain that Pam had been moved to ICU.  Well, no-one had and I found that annoying, but I went to the ICU at 8:15 this morning and found Pam once again on a BiPAP machine.  ICU can better manage Pam's 'obs' and evidently that's the only reason she was sent there.  Apparently her blood oxygen had relapsed after I had gone home and Pam had been transferred to ICU at 10pm last night.  They let me stay with Pam for just a few minutes because visiting hours in ICU start at 11am.

 

I went back at 10:55am and was allowed in.  Apparently, the BiPAP machine was doing its job in reinflating Pam's left lung and Pam was looking happy, if not 100% healthy yet.

 

I received SMSs from Sharon and Jeni (our two daughters) telling me that they were coming to see their Mum.  Sharon from Adelaide, Jeni (and her two children, little Ellie and baby Teo) from Melbourne.  They arrived mid afternoon with Jeni arriving first - and very pleased was she, to see her Mum.  Sharon arrived an hour later and eventually we decided that when we left, I'd bring some fish and chips around to their motel and we'd get into it.  I later remembered that as it was Tuesday night, I was due to go to band pracky at 7:30.  I rang the musical director and told him that I might be late.  I actually arrived just 5 minutes late.  The ICU has strange visiting hours - even though they'll probably let you in anytime, they prefer 11am to 1:30pm then 3:30pm until 8pm.  Apparently these hours are not too different to the rest of the hospital, but theirs start at 9am and are definitely not enforced.

 

It's now Wednesday 17th and after visiting Pam, I had lunch with the girls and the kids (Jeni's) at the Working Man's Club and we agreed to meet again later with Pam and get a family photo.  The girls had also seen Pam after I had this morning and reported how unwell she looked.  I'll be in the waiting room before 3:30pm to find out how she is.  I am ever the optimist, but news like this doesn't wash well until I've verified it.  Anyway, here's the photo of all those mentioned, including me (Jeni's closest to the camera)...

 

 

At 9am tomorrow, I have an appointment with one of the ICU doctors who will explain exactly what the ICU is doing with Pam and what is hoped as to be the outcome.  Pam and I have both agreed that life-preserving with no inherent improvement of health is, for us, not an option.  So I'll get back to you when the outcome is known.

 

Thursday 18th.  Sharon and I turned up (independently) to the ICU waiting room at 8:25am.  We had to wait 15 minutes to get in and when we got to Pam, we were simply amazed.  Yesterday was a bad day for her, she was off the BiPAP machine for just 15 minutes in the 24hrs.  But this morning, when we got there she had been off it already for nearly an hour and her stats were good, and this is how we were received...

 

 

Pam totally surprised me, and that's not the first time since 2009 BTW.  The Dr said she's not completely 'out of the woods' by any means, but the signs look very good.

 

 

I really LOVE my missus!

 

Here it is now Sunday 21st June.  I got up as normal, and soon after 9am went to see Pam (who had been happy and well thanks to the treatment in ICU), but when I got through the door from the waiting room into ICU a nurse mentioned I should go back to the waiting room as there were a lot of doctors currently with Pam.  I asked if was OK to wait outside her room door, but she said it'd be better if I went back to the waiting room - so I did.

 

Soon after I had settled there, having turned on the TV to enjoy while I waited, all five or six doctors who had been with Pam came into the waiting room to talk to me.  I switched off the TV and the head doctor, Dr Mani, explained 99% of what needed to be explained, and I thank him for the kindness he showed me.  Pam had had a terrible previous night struggling to breathe even though she was on the BiPAP machine all night.  Dr Mani explained that in spite of the medications to rid Pam of the fluid in and around her lower lungs, it was nevertheless still there.  Pam's Oxygen saturation was in the mid 80's percent (way too low), her heart was racing at 130 beats per min (way too fast) and she was attempting to breathe at a rate of 30 breaths per minute (way too fast) and getting precious little air for her effort.  He went on to say that, with Pam's MS and the failure of the pneumonia treatment for her, they could only now do their best to keep Pam comfortable.  No more BiPAP or mask and hence no more need to keep her in ICU.  She will be (and was) given morphine to help her relax and not notice the discomfort of struggling to breathe - perhaps not even needing to struggle if indeed she was relaxed.  They are trying to find a single bed room for Pam in Ward 4 (a rehabilitation and palliative ward) and would likely be placing her on an intravenous morphine treatment there - until she died.  (I don't like the term 'passing away' because that implies an active step one allegedly does, when physical activity is not possible.)

 

I went to see Pam and found her on an air/oxygen nasal ventilation and yet her Oxygen figure was 97%.  Apparently she had been off the BiPAP for ages too.  Jeni, George and their children had left the previous night expecting none of what was to happen.  Sharon, Neal and their two girls had arrived since the previous post and were still in town.  It wasn't long before Sharon and youngest daughter Erika arrived, Neal and Kira arrived a little later but they were soon leaving to go back to Adelaide  Pam was very tired, not having slept at all the previous night, due to her struggling to breathe, but was now strangely at piece and able to sleep.  I left and returned about 90 minutes later.  This is how Pam looked this afternoon (having had some morphine)...

 

 

 

 

Because the BiPAP machine had been taken away, a nurse had taken the mask tape off her nose.  (There's a wound on the bridge of her nose which happened because of the mask prior to the tape being applied.)  I made it clear to all and sundry that, if at all possible, Pam would like to be home during this end-stage game.  Given the equipment we have here at home, perhaps Mildura Palliative Care might be able to acquire the additional equipment - the air/oxygen pump and the morphine infusion pump.

 

I'd like to think Pam has been like this before; and she'll come good yet again.  However with the known fluid in and around her lungs, and the fact that pneumonia still had her left lung collapsed - I'm afraid I don't like my chances.  It's now 4:20pm, I'll update this blog and go and see my darling.

 

Well, it's now Monday 22nd 9:05pm and I've just returned from seeing Pam.  This morning the Community Palliative Care nurse told me that they could provide oxygen equipment and a morphine infuser for Pam, when she comes home (tomorrow) and I purchased an ice-crusher in order to orally give Pam the crushed ice, which she'd become fond of since yesterday. Of course, I also made some ice-blocks. 

 

I had visited her four or five times today, but this time, as I was heading off to go at 6:30pm, I got a phone call on my mobile from Greg, one of the male nurses in ICU.  He explained that Pam was comfortable and currently asleep and it looked to them that she might not last the night.  He muttered something else, but as I was already heading there, I told him I'd see him when I got there in about 5 minutes.  This I did and he explained that if I wished to stay the night they could find me something comfortable to sleep on and then I would be handy if Pam died.  I replied that if Pam died, it wouldn't matter when I turned up or not, but that I would like to know that she had - and when.  Then I went in to see my poor Pammy.

 

The room lights were on and the TV was going and Pam was laying there with her eyes closed and mouth wide open - but she was definitely breathing.  She soon realised that I was there and opened her eyes and I sat beside her and held her hand.

 

 

She was having great difficulty talking, but I managed to tell if she wanted crushed ice or the washer on her head re-wetted etc.  She was watching TV but was unable to tell me what she had just seen.  Jeni rang from Melbourne and expressed her love for her poor, dear Mum.  I kept holding her hand and telling her about the early days of our relationship - and Pam smiled.

 

Eventually, one of the nurses came in and asked if she could take some photos of the two of us - how thoughtful she was.  Here is one of the many...

 

 

I stayed until Reno Rumble had finished because I had a feeling that Big Bang Theory might be on next - and both Pam and I HATE that with a passion.  It turned out that Married At First Sight was on and Pam wanted to watch that, so I kissed her goodnight, told her that I planned to see her in the morning with the ambulance eventually taking her back home and then went home myself.  The staff of ICU will ring me if necessary, but what I'll do if I'm told that Pam has died is anybody's guess.  I might get back to sleep, but probably won't.

 

So here it is now, 9am Wednesday 24th of June.  Yesterday was one of the busiest days for decades (if not my whole life).  I was up at 6am, shat, showered, shaved and breakfasted by 7am and after washing the clothes and hanging them out, I was out to the hospital before 8am.  I didn't know what to expect Pam-wise, but after the night before, and moderated by the realisation that no-one had rung, I was optimistic.  Pam didn't let me down - she was bright as a button and excited about the prospect of going home.

 

The ambulance was scheduled for 10am, but Pam now wore a morphine-delivering, battery-operated syringe pump as well having oxygen being delivered into her nose.  These two things needed to be considered as certainly the oxygen had to be kept in action, during and after the transport.  The Palliative Care Nurse (PCN) was supposed to come before the ambulance arrived to change the morphine pump, but as it turned out, she unfortunately could not; so Pam was given an injection of morphine into the subcutaneous bung already placed in her left leg.  The ambulance men had an oxygen supply, so at 10am, or thereabouts, Pam was driven home.  I drove home before the ambulance arrived and soon after a lady arrived from a company called 'Air Liquide' and put in place a large oxygen pump in readiness for Pam's impending arrival.  I called TRIO Support to a: send someone to note what's going on and b: restore my Pam-care cover.  Pam then arrived, so did two staff members from Trio.  The PCN was still there.  I had the ambulance men just take Pam into the lounge room where I used her sling and lifter to take her to the bedroom.  The PCN came with a morphine pump, identical to the hospital's pump and it was quite a while before it could be put in place.  The hospital had given me a prescription for the medicines to be pumped, but they had to be ordered from the pharmacy,  (So far, I've only mentioned Morphine, but there is also Midazolam and Ondansetron in the mix.)  So the PCN disappeared to Flannigan and Poole's Pharmacy in Lime Avenue and I took my Pam-care cover to do some shopping.  When I got back, the PCN had returned and was waiting for the delivery of the pharmaceuticals - but that didn't happen until 3:45pm.  While she was waiting, she prepared and labelled syringes, two with water, to be used as water flushes after additional medication of Morphine and/or Midazolam to be given if Pam is distressed for any reason.

 

Pam-care cover was reinstituted and so at 7:30pm, I went to band practise and enjoyed it immensely.

My darling wife was still peaceful when I got home at 10pm and I was tired and wanted to retire to bed - and so I gave the TRIO Support lady leave to go half an hour early.  What a day it was.

 

This morning I took a picture of Pam in her bed.  You might think (and be correct) that I've done this many times before, but given what's going on with Pam, I'm grateful she can be so peaceful...

 

 

This afternoon, Pam's sister Val rang up to say she and her husband Tony, would be coming up (from Melbourne) to visit Pam this coming Saturday.  Pam is delighted and I can think of nothing better to give her the enthusiasm to keep hanging onto life.

 

To think, only two days have elapsed since the last posting because here it is now 9:10am Friday 26th June and to me, the last post seemed to have been done a decade ago.  Poor Pam is fading fast - her throat is gurgly, her voice is weak and she now has difficulty with anymore than one-syllable words.  She might say "Ice" and I'll get up (even if it's 1am and cold (and I'm in only my undies)) and get a few ice-blocks out of the freezer, crush them (in the new crusher I bought last Tuesday morning) and take them to her in a drinking glass together with a teaspoon to slip the ice in between her lovely lips.  Once, she even said "Ta".  Well I remember how she used to say "Thankyou" more frequently than nearly anyone on the planet, but this slow impending dying thing robs one of many, unexpected things. It does indeed!

 

As I type this, it's 4:55am Saturday 27th June.  Last night, Pam had a horribly gurgly throat and/or chest and I could not encourage her to breathe in through her nose.  There is an oxygen input fitted to her nose, but in her dealing with the difficulty in breathing by attempting to breathe in and out through her open mouth, I think she was receiving no benefit from that oxygen.  I'm not a medico, but I reckoned that in Pammy breathing like that, the oxygen input was being occluded by her soft palate.  Anyway, I got off to sleep, but was soon awakened by poor Pammy desperately trying to breathe by rapidly gurgly breathing in and immediately out with relatively long pauses between such breaths.  I had earlier encouraged Pam to not only breathe in nasally with a closed mouth, but to also see if she could shift the 'pause' to immediately after she'd breathed in, not after she breathed out.  But I might as well have been talking to myself.

 

I wondered how long Pam could keep this up, but soon became empathetic about her stress.  It was a cold morning, so at 4:15, I went to the kitchen and dressed without the benefit of the three bathroom S's firstly and increased the oxygen output of the Oxygen Concentrator (now kept in the kitchen because of its 40 decibel noisiness) from 2 litres per hour to 4.  I then went to Pam and placed the ventilating nose piece in such a way that it was pointing into her mouth, not her nose.  I also gave her a Midazolam injection to mitigate her agitation/anxiety distress.  Having written these two paragraphs, I have just now checked on Pam and all appears well.  While her chest/throat is still a little gurgly, she is breathing more normally and seems to be happily asleep. 

 

She is looking forward to the impending arrival of her sister and brother-in-law, Val and Tony, from Melbourne - who are possibly driving up here as I type.  I'll be ringing up Palliative Care Services at 8:30am to see if they've got something better than that which I'm currently using to ventilate Pam's mouth.

 

9:30am.  The Palliative Nurse has arrived but it turns out that the gurgling, which I thought was a consequence of her lungs filling with fluid, is in fact a usual event associated with impending death and is called a 'Death Rattle'. She gave Pam hyoseiene into her sub-cut bung to help alleviate the gurgling.

 

Val and Tony arrived in the early afternoon - and Pam was so happy...

 

8:45am Monday 29th.  Val and Tony again visited and left for home soon after.  Therese Rhodes from TRIO Support came around at 10:30am to give me some welcome Respite Leave, which I took and returned sometime after 1pm.  A PCN came at 1:25pm and Therese then left.  My darling Pammy refuses to die.  She is still breathing - with the shortest, shallowest of breaths, every 5 to 7 seconds.  Fortunately, the gurgling has stopped and has been so for 36 hours.  I don't think the hyoseiene helped at all, Pam only had one dose and it's supposed to be given 4 times a day, every day - but it wasn't needed, as it turned out.

 

Pammy's extreme and unfair life battle ended peacefully at 1:30pm today, Monday 29th June.

A funeral trip to Melbourne

We were saddened to learn that Pam's mother had passed away on 16th March and naturally, Pam needed to attend the forthcoming funeral upon hearing the news.  Her mother, Mary Austin, was 91 years of age and had reached a stage where her poor body was shutting down and had indeed stopped.  When we heard of her death, we began organising for the trip to Melbourne.

We found that Benlynne Park Nursing Home in West Sunshine could put Pam up, provided that we would spend at least one week there - so we agreed to go down on Friday the 20th and return on Friday 27th (my 66th birthday).

Our case manager, Peta Webber got us to see our GP, Dr Bob Meyer to arrange for air ambulance transfer.  I arranged with my daughter Jeni to stay with her and her family at Taylors Lakes, on the outskirts of Melbourne, not far from the Calder Park race track.

On the morning of the 20th, I left at 7am with all of Pam's (and my) stuff - her electric wheelchair, her feed pump and stand, food case, widget bags, clothes case...  a list that ran to two pages of "Outs & Ins" (a tick in a box to indicate it was being taken 'Out' and a blank 'In' box for when I returned).  Pam was picked up by ambulance and taken to the airport for the air-ambulance at 8:30am, but it wasn't a problem if I arrived after Pam did because Benlynne Park staff would care for her until I arrived.  As it turned out, there was another patient with Pam who needed to be dropped off at Birchip and so it wasn't until noon that she eventually arrived.  I arrived at 12:30pm, just 5½ hours since I left – and I DIDN’T speed (I just didn’t stop).

Benlynne Park staff made some errors in looking after Pam’s needs, but I’ve got to hand it to them, they never repeated any of them.  They were wonderful!  I travelled from Jeni’s to Benlynne Park several times per day on most days and Pam had may visitors (seeing we were there for a funeral on Wednesday).

Here's a picture of Pam at Benlynne Park with our Grand-Daughter Ellie Shinas...

 

The Wednesday funeral was at Highton, Geelong at Tucker’s relatively new funeral parlour – a place with among the best views imaginable.  Pam’s sister Val gave one of the best eulogies I could imagine – and, all in all, it was a real good send-off for my mother-in-law, who had, only days earlier, had rejoiced in hearing the beautiful music that the morphine had provided.

On return from the funeral, we followed my sister-in-law Dorothy to see her new house in Lara and then drove to Val and Tony's house in East Keilor.  It was lovely to see all the people, many of whom we hadn't seen for decades.

At 4:15am on Friday 27th, I left Jeni & George's place and headed to Benlynne Park for the last time (for this trip, at least).  It only took 15 minutes to get there at that time, compared to 50 minutes or so during peak hour.  It took me an hour to load Pam's gear and I was on the road at 5:30am.  The traffic was minimal.

I got home at 11:45am, but Pam didn't arrive till 4:30pm - at least she didn't get there before me, which would've indeed been a no-no.

So that was last Friday and here it is Sunday 30th - I hope you enjoyed the read...

The Mathematics of Pam-Care

It's been quite a while since my previous post (and Pam's pressure-sores are still being treated BTW) and now it apparently is time for a newer design PEG-feed pump to be used.

The Dietician wanted Pam to have 700ml for PEG food per day, but it was found that, according to the Compat-pump, it reckoned there was only 650ml in the bag (which was loaded with 3 x 237ml boxes of 'Resource 2.0' food) and time proved that even 625ml in an overnight PEG-feed - at 54ml/hr would regularly cause Pam to become nauseous as the feed was completing.  The nausea is extremely dangerous for Pam, because regurgitation leads to lung aspiration and subsequent aspiration-pneumonia.  So I decided to reduce the feed to just 600ml at a rate of 52ml/hr and, since then, nausea has not been an issue.  I did this without advising the dietician and have worried about that detail ever since - but it's turned out to be not as significant as it appears...

The new pump is a Kangaroo-Joey Pump - and it reckons there are 711mls in the 3-box bag (which is indeed the case).  So I figure that to get the same volume into Pam as she is used to, with this new pump, the 600ml becomes 650ml and the 52ml/hr becomes somewhere between 56 and 57ml/hr for the SAME delivery amount and feed rate as for the Compat Pump consequenting in a similar feeding duration - I'll leave it to other mathematicians to argue here.  This regime goes into effect tomorrow night.  If all goes well, Pam still won't be nauseous and the Dietician won't be as dismayed as she might have been when she eventually learns of this new feeding regime.

 

The retiring Compat Pump (A lovely pump that tells ultra-fibs)

 

The Kangaroo-Joey Pump (much smaller than the Compat) - an almost truthful pump

 

 

A happy Pammy - who is blissfully unaware of the weird mathematics involved.

 

Pressure Sores - Argh!!!

Here it is 12/01/2015, quite some months since Pam's visit to Westhaven, and yet the District Nurses are still coming around twice a week to change the dressings on her many pressure sores collected there.  At least more than half of them are showing definite signs of improvement, but still all dressings and foam-rubber coverings are in place - as if nothing had changed.

In the early days of Pam getting these, someone said "Oh, pressure sores - they take a LONG time to heal".  Well, she was right - that's all I can say.

It amazes me how Pam stays genuinely happy, in spite of these horrors that she's never had before.  She really is a special person - and I'm still her Carer (and oh boy, I care!)

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 8^th St.  Parking was difficult, but I got one in Langtree Ave about halfway down to 7^th 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 22^nd 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 efiesley@gmail.com if you have any comments to make (good or bad).  It seems that blogspot.com 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.

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...

 

 

...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.

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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.



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).)