Trials of the very New Year

My darling Pammy returned home from hospital on Monday 7th and after 3 subdued days was once again regurgitating her overnight PEG feed just before it was due to finish yesterday morning at 7:20am.

It sounded like a very substantial event and I sat up expecting to see stomach contents all over Pam’s bedding – ah but no.  Pam managed to keep her mouth closed and was busily swallowing its contents as I quickly reminded her “Don’t breathe in whilst you’re swallowing!”  But she apparently already had.

What followed next was the pitiful experience of watching poor Pam trying to cough up that which had gone down the wrong way.

I thought “Here we go again” and even notified our daughters to expect their Mum being shortly returned to hospital.  The stress of coughing certainly knocked Pam around, causing her to become excessively tired – and all that could be done (before seeking medical help) was to regularly monitor her temperature to detect the almost-inevitable onset of subsequent aspiration pneumonia.

I’m writing this at 5:45pm, Friday 11^th January and so far, her temperature has been stable and Pam appears bright and happy during the short moments she is awake.


Adding to the above story, it's important to mention that I am aware that one of the main dangers to Pam is her nightly PEG feeds. Prior to Pam's most recent visit to hospital, she had been accepting 500ml of PEG feed delivered at a rate of 48 ml/hr. That actually used roughly two and a half boxes of "Resource 2.0" (it used to be "Novasource 2.0" until a week ago - the change being imposed by the supplier), with the extra half box volume having to be discarded.  However, when I got Pam back from hospital I noted they'd only been giving her 2 boxes each night - and that got me thinking...

Pam returned home with a healthy weight of 61.6kg. This is in excess of the 60kg recommended by her Dietician and so I reasoned it would be OK, at least for a while, to not only keep the feed at two boxes (registering on the PEG feed pump as 400ml even though each box allegedly contains 237ml) – and this represented a 20% reduction of food intake per night.  Now the prospect of it finishing the feed in the wee-wee hours of the morning got me realising that by reducing the feed rate also by 20% would have the feed finishing at a time to which I was accustomed.  So as well as being convenient, it was a potential double remedy for Pam’s nausea – she was to get a lesser amount delivered at a slower rate.

That was the regime until the latest regurgitation on the morning of Thursday 10^th, but since this event I’m lucky to get Pam to accept just one box (registering as 200ml) and being delivered at just 20ml/hr.

I have discussed this with our GP and Pharmacist and from this coming Wednesday, Pam’s anti-nausea medication will not be Motilium, three times per day nor Pramin, four times per day – but instead each of the above on alternate days.  It will be Pramin one day, Motilium the next etc.  Pam accepts that when this regime is in place she’ll once again be brave enough to attempt consuming 400ml at 40ml/hr.

I hear you – you want to know why wait until Wednesday?  Well, it’s the normal weekly start day of Pam’s medication dosette packs and while I acknowledge that the Pharmacist (Tim DeBoo of Flannigan and Poole Pharmacy, Lime Ave Mildura) was willing to update the dosette pack that I was currently using, I reckoned (with Pam's agreement and without medical backup) the little potential weight loss would not be an issue.

 

A happy Christmas and a weird New Year

Well, Christmas this year was celebrated earlier than usual because of family commitments requiring them being elsewhere on Christmas Day.  Friday 21st was our decided-upon family gathering.

The usual 'feasting' and gift-exchanging happened on that Friday and Pam as usual, missed out on any and all of the food.  But she had secretly anticipated this and had organised something for herself to eat on Christmas Day itself (as she reckoned she would still be feeling so well). To my great surprise on Christmas Day, with everyone else gone, Pam announced that she wanted me to prepare a Pavlova for her!

Meringue, being crumbly, is the last thing I imagined she could cope with, but of course that's what constitutes the base of any Pav. Pam had bought a box of single-serve Pav ‘nests’ and she reasoned that the crumby nature of these could be counteracted by lots and lots of double-whipped cream and so she had bought a container of that as well.

For topping, in the fridge she had arranged for a sealed bag of chilled fruit to be there, with which to decorate the cream – all these things purchased and put in place without my having any idea whatsoever.

Well, Pavlovas are the easiest of things to prepare and so I quickly assembled one and took it to Pam who was still sitting in the lounge. It turned out that poor Pammy couldn’t quite manage it, so I got a teaspoon and spoon-fed the Pav to her – which she absolutely LOVED!!!  This was the first food that she had taken orally for years and Pam reckoned the taste was fantastic.

She munched it all up and swallowed it without any drama whatsoever.

Pam liked it so much that she asked for another one next day and that was a huge success also.

But that was Wednesday, December 26.

On Sunday, December 30, 2:25AM, Pam awoke me by the sound of her attempts to deal with the consequence of nausea, brought about by her body poorly coping with that night’s overnight PEG-feed.  Her pathetic attempts to vomit were merely bringing PEG food up into her mouth, which she would then try to re-swallow.

It’s the old story – breathing whilst swallowing allows food into her wind-pipe and causes subsequent hugely attenuated ‘violent’ coughing.  This coughing, attenuated because of her MS, is quite ineffective and causes Pam more and more stress in her coughing effort.  She quickly tires but keeps coughing pathetically in spite of her exhaustion.  This stress took hours to fully develop and I eventually called for an ambulance.

The ambulance arrived and the medical personnel reviewed Pam, who had strangely settled down prior to their arrival and seemed to be doing well – her temperature and other stats were not abnormal but they suggested it might still be wise to have her checked out at the hospital.

Well, Pam didn’t want to go and I couldn’t blame her. Past experience had had her laying on a trolley for days on end in a noisy Accident & Emergency facility; no fun whatsoever and no sleep possible to boot!  And so it was agreed that she could stay in my care for now on the promise that I would call again immediately if Pam’s condition worsened.  It was 5:00AM when the ambulance left.

Pam still had a gurgly throat, especially while she slept and she continued to have frequent bouts of one or two almost-productive coughs.  But she seemed diminished in what she could do compared with how she was prior to the 30^th.  For example, she could no-longer manipulate the control buttons on her lounge room chair.

By Wednesday 2^nd January, Pam’s respite carer rang me to tell me she thought Pam’s temperature was a little high (at 37.5^oC) and so I came home and continued to monitor it. That temperature didn’t frighten me all that much except for the fact that that same thermometer measures my temperature at 35.5^oC – but Pam was still looking a little the worse for wear, so I rang the Nurse-On-Call for advice.

As a consequence it was recommended that Pam be taken to hospital for a check-up and Pam, by this time, actually agreed.  So at 1:15PM I again rang for an ambulance and Pam was subsequently whisked off to hossy.

The Accident and Emergency Dept seemed to be unusually quiet when I entered, following Pam (being trolleyed in) and she was settled into suite No 10 and subsequently X-rayed. This X-ray revealed she had aspiration pneumonia once again, this time in her other lung.  And so she was admitted and sent to a ward by 9PM.  (I was amazed – not only was the A&E Dept. unusually quiet; but this hopelessly under-designed hospital actually had bed-space available for Pam.)  I shut my mouth and lapped it all up!

That was Wednesday and here I am writing this on Friday.  Pam’s as well as can be expected and I’m anxious for her return.

Here's a picture of Pam in hospital...