A Curious Development in PEG-feeding / Use it or Lose it

Pam's Mildura Base Hospital dietitian had been very keen, as were we all, for Pam to put on weight. It wasn't too very long ago when Pam was very underweight - 30-something kilograms was measured at the hospital as I recall, but since I started daily weighing her, the lowest figure I have on record is 44.5kg - and that was in August 2010.

The dietitian was keen to get Pam up to 65kg, but over time I noticed that most of the weight increase was focused on her abdomen and not her legs or arms, so I got a mutual agreement with her (the hospital dietitian) that a more appropriate target weight for Pam would be just 60kg.

Pam was consuming three brix of Novasource 2.0 liquid food in a continuous overnight PEG-feed, commencing at 9pm and usually finishing around 7:30am and her weight steadily improved and eventually reached 60kg in early January - and continued to increase until Pam evidently decided to do something about it.

In the past few weeks, Pam started to politely announce that she'd ‘had enough’ when there was still half a brik or so remaining in the pump's supply-bag. Prior to this, Pam was daily struggling to accept the full three brix of feed and was keen to comply with the rules in order to gain weight, but in hindsight that may well have been the cause of the regurgitations mentioned below. Anyway, Pam had apparently personally and privately decided that she had no further need to put up with the discomfort anymore and had begun to regularly report the first moment of this feeding displeasure.

Sadly, I’m not Superman and me getting woken up at 5:30am or earlier, being requested to turn off the feed-pump (and disconnect it, post-flush the PEG, discard the bag kit and remaining food etc and then go back to bed to 'sleep'), quickly became onerous. So I just as quickly rescheduled the PEG-feed start time to 10:30pm (or later) instead of 9pm, and the Nexium stomach-settling med just 10 minutes prior (exactly, more or less), not 10 to 20 minutes as was previously done. At least now I can sleep until 7am or so before Pam feels the need to make her pump-switching-off request.

Curiously, for the past fortnight, Pam’s weight has settled to a steady 61kg and just this morning I rang the dietitian and explained all this to her – and she is more than happy with what’s happened, by the sound of it.

Peace at last, I hear you ask?    Nah, sorry…

A couple of days ago, Pam yawned and subsequently reported that she had hurt her jaw in the process and last night, she twice asked for Panadine Forte to help her cope with the pain. For the first such dose at midnight, I remembered to put the feed-pump on ‘hold’ while I administered the tranquiliser, but not so, unfortunately, for the 4:30am request. Although I only took a moment to deliver the pain-soother, a couple of millilitres of PEG food had pumped into the cap which I’d temporarily placed over the tube nozzle. That was more than enough to make the nozzle slippery and it came away from the PEG tube as a consequence within minutes of it being ‘tightly’ reconnected thereafter.

The mess that followed has been much worse in the past. Pam, of course, had not had any feed since 4:30ish because of the disconnection and so she slept peacefully until my alarm radio sounded at 7:30am. She then arose from her deep sleep, recognised the digital display of 541ml of food that had been pump-delivered (in total) throughout the night and had the grace to announce, perplexedly I presume, ‘Darling, I’ve had enough!’ Of course she had – so had I. But today is sheet-changing day anyway; besides, the tea-towel I had folded and placed under her PEG connection point had caught most of the mess, so there was minimal impact on my day, as far as I could tell.

I’m left wondering if Pam’s jaw problem needs a medical opinion.  I’ll let you know.

(5 hours later)

Well it didn't take long to find out...

Pam's jaw pain continued to worsen and eventually (at 5pm this afternoon) she finally consented to me taking her to hospital to find out the cause of her pain.

I won’t go into what’s involved in getting Pam from her bed to the Outpatients/Emergency Dept. at Mildura Base Hospital, but within 40 minutes we were there and it was 9:45pm by the time we were settled back home; but we were thankfully wiser by the knowledge that the ‘jaw’ problem (was it broken or dislocated) was in fact Parotiditis – inflammation of the Parotid gland which is one of the salivary glands. The inflammation is apparently caused or exacerbated by blockage of the gland through lack of use.

Here's my beautiful Pammy back home from hossy, butterly uggered and enjoying the Nexium-aided part of her overnight PEG feed.  The time is 11:45pm.

Parotiditis is a direct consequence of Pam no longer being able to take anything, food or liquid, orally. It just has to be the classic "If you don't use it, you'll lose it" – and that opens a BIG bag of worms. The problem can be temporarily relieved, evidently, with antibiotics but if Pam is to overcome it permanently, oral intake of some sort is going to be necessary. But these days, anything untoward getting involved with Pam’s swallowing process runs a good chance of getting into her lungs and finishing up as aspiration pneumonia. Pam and I both definitely don’t want that!

This sounds like real fun coming up.  I’ll wait and see - and let you know, no doubt.