Sunday, February 27, 2011

Another Reprieve

Pam's return home was accompanied with a plethora of paperwork, much of which was to do with a new regime of feeding and flushing for her stomach PEG. Life gets exciting and when one realises that the wonderful ‘routines’, ‘habits’, ‘rituals’, ‘monotony’ that had achieved some degree of hallowed perfection over the last many months, had just been thrown out the window, one has to get philosophical; smile surreptitiously and see what he can resurrect out of the mess.

Well, what can I resurrect if I now give Pam her first feed at 7am (when I used to wake up at 7:30), followed by a medicated PEG flush 2 hours later and in another 2 hours another feed and so on for four feeds and three in-between PEG flushes all to be finished by 8pm. Of course, the four feeds have their own pre and post flushes don’t forget; and if I seem to be a bit niggly, don't forget how Pam could feel and with much more justification - if she so chose to. Her stoicity keeps me firing happily however, believe it or not.

It occurs to me that no reader of this would ever give a damn as to the 'routine' detail, and it’d take way too many key-strokes to describe it in any detail anyway, so we’re ALL happy, hey – so therefore I’m not telling!

(There are many postings for this blog - please check the Archive for those not displayed here.)

Sunday, February 20, 2011

And it's not even winter

(...but this is a silly summer!) Living with someone in the later stages of MS has its surprises, however sometimes the surprises aren't much fun, more's the pity. I've maintained for years a document to help others who may come in to care for Pam to get some idea of what normally happens. This recently had to be updated (yet again) because of the Dietician’s recommendation of four daily cans of PEG-fed food instead of the customary three.

To ease the difficulty of having an odd 2/3 can or 1/3 can sitting in the fridge as the day wore on, in order to deliver one and one third cans per feed, it was agreed between myself and our most frequent carer that starting the day with two full cans in the supply bag will obviate this difficulty, with reasonable care. After all, ‘one and a third’ cans per meal is OK on average, but if a push comes to a shove, Pam is known to have been able to take two cans at once without even noticing. Ah, but cutting one corner fouls another. When the pump was in play, bolus feeding was easily programmable, but with a gravity system this luxury doesn't exist. To deliver one and one third cans from a bag containing two cans worth takes some deliberation (regardless of the broadness of potential tolerance).

The truth is, just as it was with the pump and my subsequent errors with it thus forcing me to abandon it, it didn't take too long for a miss to occur in stopping the PEG feed at the correct moment and Pam being delivered (slightly) more food than she was supposed to have and as it turned out, this time, was quite uncomfortable with. I came home to find Pam dry-reaching and gagging, and for a while at least I thought the (rather minor 25ml) over-feed was the crazy cause. Well if indeed that was the case, it'd soon settle down in under an hour or so and that’d be that, so I thought.

Well Pam just got gradually worse. The over-feed (that insignificantly slight over-feed) happened Friday morning, but Pam was regurgitating almost continually not because of that, but because she'd evidently earlier caught a vomit-bug of some sort. The feed error was merely coincidental and unfortunate. Last night (Saturday night) as we were in our adjoining beds, Pam was definitely not normal. I feared she had aspirated some swallowed vomit which accounted in my mind for her rattly breathing. I turned on the light and watched her breathing - tummy rising and lowering, not her chest - and eventually announced I was going to phone for the ambulance. Pam didn't argue too much and in due course they were here. They quickly determined that Pam's temperature was sky high, as was her heart rate and promptly took her off to hospital.

Mildura Base Hospital is hard-pressed to cater for emergencies and yet the staff are calm and professional. They soon had Pam's nausea well and truly smothered with some wonderful mysterious substance, but as I type this in the early hours of Monday morning, Pam lies in a bed, as a hospital admitted patient, still in the ED Dept; such is the hard-pressedness of that which I wrote. (In spite of the time stamp, this update was published at 12:55am, Monday 21 Feb 2011 ADST)

Here I am once again adding to this - it's now Wednesday 23rd February and I, just this morning, loaded both the wheelchair and Pam's coming-home clothes into the car (van) with a half expectation of her hospital discharge being today. I had suggested to the medical staff earlier that if Pam needed more time to recouperate, could I invoke our private health cover and have her tranferred to Mildura Private Hospital? I was told that that was entirely up to Dr. Terry Cook, Pam's appointed treating specialist (Terry is a Physician and I've known him for decades). Regardless of this, it looks as though Pam comes home with me tomorrow.

What happened, I hear you ask? - well the cause of the vomit-bug is still a mystery as far as I am aware, but may have come from a bladder infection (a common event in view of Pam's supra-pubic catheter). Anyway, the vomiting eventually aspirated into Pam's left lung and caused an infection which would have become pneumonia if it hadn't been picked up when indeed it was. Pneumonia is life-threatening to otherwise completely healthy people, but I fear it would be fatal to Pam in her frail condition. Here's a picture of how she looked on Monday, still with an infection-induced fever...

(Isn't she beautiful though?)

Pam responded well to the antibiotic therepy and is now just waiting to feel strong enough to come home - Terry says,"Fair enough!"

(There are many postings for this blog - please check the Archive for those not displayed here.)

Sunday, February 13, 2011

Variety is the Spice of Life...

- but monotony isn't necessarily the sour grapes of depression, however monotony breeds routine (much more efficiently than could familiarity ever breed contempt, at least in my case) and routine imposes itself relentlessly without deliberation or forethought.

The art is to recognise that if what you’re doing is worthwhile and if you do it the same way (more or less) every day, then you’ve probably worked on it to get it, over time, to be so efficient. Indeed, this is where I am and it’s been noticed in my case by experts and novices alike. I will deal with some of my weird routines as a later addition.

Why am I bringing this up? Well, it’s because routine has a dark, dark side – read on…

Since Pam’s stroke two winters ago, as you know (if you’ve read this upside-down blog bottom to top) she was subsequently fitted with a stomach PEG feeding tube. To use this properly, the tube must be flushed through with water before and after the liquid food is delivered (via the pump). Emma Staniford, the Mildura Base Hospital Dietician, determined that for Pam to get the required fluid intake, the pre and post water flushes should be 3 (not 1) X 60ml syringes each. (A 50ml rated syringe will hold 60ml when full).

Don’t be confused by these figures, the point I’m trying to make is the NUMBER of openings and closings of the clamp on the PEG tube, believe it or not.

Each time a syringe or feeding tube is inserted into Pam’s PEG tube, the tube must be clamped until insertion, opened during insertion (otherwise the insertion won’t go completely in), the liquid (water or food) delivered, then the clamp once again closed. If one is delivering 3 pre-flushes, for example (and that happens 3 times a day, 7 days a week), one finds oneself opening, closing, opening, closing ad nauseum and this quickly becomes monotony, not routine.

Over time I have noticed that I’ll make a clamping error about once per fortnight. For example, I’ll attempt to inject a syringe-full of water and then notice the plunger will not budge. It doesn’t take Einstein to figure out I forgot to open the clamp. Alternatively, I’ll remove a syringe and get my fingers wetted with a slight water discharge from the PEG – hallelujah, I forgot to close the clamp. And so it goes – as I say, I reckon I make a little blue like this about once a fortnight. Now let’s do some maths – 3 pre-flushes, 1 pump feed followed by 3 more post-flushes is 7 openings and closings of the clamp per meal, which is 21 per day. I estimate I make an error about once a fortnight, that's once in every 14 x 21 = 294 clamp closing operations per fortnight. One 7th of these is the serious error of closing the PEG clamp prior to turning on the pump. With the assumption of everything else being equal, this should happen one seventh of once a fortnight, namely once every fourteen weeks. In other words, one serious prang every 2058 closings. Well guess what – if there’s a probability like this that it will happen, you can bet it does!

The significance if this particular clamp-closing error cannot be overstated – as soon as I start the pump, it is a fixed delivery pump and within less than a minute it will have blown the plug out of the (not currently used) medication-input tube on the PEG simply because the liquid food has nowhere else to go and is being force-fed. Here is a picure of what I am talking about - the feed-tube enters from the lower left, the PEG opening (and open plug) is evident and attached to it slightly above and to the left is the plugged medication input. Farther up the PEG tube is the clamp.

I will have replaced Pam’s sheet and blankets over her by then, settled her and retired to the lounge room to answer emails, watch TV or write this blog. About 30min later, Pam will ring her bell to get me to come because she feels ‘wet’. I lift the blankets and see a mini-lake of liquid food soaking into Pam’s buttocks-cushion, the bottom bed sheet, her knickers, her top – you name it. It’s a mini-disaster consequenting from an innocent clamp-closure that would otherwise be insignificant. I say MINI-disaster because I can easily think of a lot worse disasters potentially awaiting us, but this error requires me to get the lifter and get Pam off the bed while I change everything. Isosource liquid food takes FOREVER to wash out of bedding – and remember, Pam still hasn’t been fed!

This error makes me very particular about that clamp for a few weeks if not months, but the mathematics eventually applies itself and off I go making that mistake again and again and again… The last time it happened, I thought, "Enough’s enough! I’m not getting any younger and as I grow older, I’ll cetainly be making this horrible error ever-more frequently, so it’s got to stop NOW!"

Gravity Feeds

Over the many months since the PEG procedure, each morning as I fitted the first food bag and feeding tube of the day into Pam’s PEG input, I would notice that it would gravity feed, quite quickly until I subsequently fitted the feeding tube to the pump prior to activating it. I had heard of gravity feeds before – namely, using the 50ml syringe tubes without their plungers, hand held for each of the 5-tube (250ml) feeds. That idea never really grabbed me – I remember actively suggesting getting the pump in lieu of that labour-intensive gravity-feeding for Pam, if appropriate funding could be allocated. (Funding is another issue I should explain using this blog, but will keep it for a future edition).

And so now here I was many months later with the great brain-wave – would not the bag and feed-tube, manufactured specifically for the pump, suffice for a hands-free gravity feed?
I won’t bore you with what happened next, except to say it worked like a charm. The drip-chamber in the tube was originally used by the pump’s processor to determine whether there was flow or not – and that’s exactly what I now use it for; as a visual aid.

This gravity feeding initially* delivered the 250ml in around 40 minutes c/f the 60 minutes via the pump, but that’s a boon, not a bane. Also, if per chance I inadvertently close the PEG tube as before, the lack of drips tells me straight away and even if I don’t look, there’s no disaster because it’s simply gravity fed.

Just last week, I returned the pump to the Dietician and made an appointment with her to explain what I’d done and why.

*Emma, the Dietician, concerned about Pam’s weight, has now recommended 4 cans of Isosource over the 3 daily meals, so now the delivery via the gravity feed takes around 50 mins, allowing for the extra food per serve – it’s still all good! I’m smiling!

(There are many postings for this blog - please check the Archive for those not displayed here.)