Wednesday, September 25, 2013

A PEG Problem

I'm not sure why Pam's PEG tube so frequently gets blocked.  Up until last night, it had only ever blocked during the hydration flushes conducted during the day - even these had me puzzled, for water on its own cannot possibly block a tube, maybe the dissolved meds might exacerbate it, but if they’re truly dissolved (which I cannot guarantee that that’s always the case) then that wouldn’t block the tube either.  But the tube all too frequently got blocked and while I could usually unblock it again, I dreaded what might happen if it blocked during Pam’s overnight PEG feed.

This morning, I found out!

Pam was awoken by me visiting the loo at about 7:00am; she discovered and reported her bedding being wet.  I was in my underpants only and without my spectacles when I investigated.  Sure enough, the feed nozzle had disconnected and the still-going pump had subsequently delivered (and was still delivering) a considerable amount of PEG food, onto Pam’s body and bedding.  The bluey situated between her and her buttock-cushions had caught much of what had been delivered since the blockage, but there was still her nightie and knickers, part of one buttock-cushion, her upper sheet and blanket and the kylie under her buttock-cushions that had been wetted by the PEG food.  Bah!

Anyway, I took much of what I could to the laundry and proceeded to get Pam washed and dressed for her day in the lounge – in the process changing her PEG tube for a nice new one..  I returned to the bedroom and took everything else that was wetted to the laundry and only then did I take a shower and get dressed.  It was good to see the world with my spectacles at last.

That was this morning – now it’s well into the afternoon.

I have rung David Carson of David Carson Electronics (a good friend of ours) and asked him to consider supplying either a moisture sensor or over-pressure sensor to warn me of any future PEG blockages before the messy consequence can eventuate.  David promised me that he will get back to me in a day or so.  He is one of the few I know who appreciate what's available and/or possible to solve this Pammy-problem and additionally has the ability to make it happen.

The current PEG tubes are similar to Pam’s urinary catheters except they’re skinnier – just 4mm outside diameter compared with 4.7mm (I mentioned this in the previous post).  I reckon they’re too skinny given the viscosity of the PEG food, but it will probably be easier to deal with the consequence of the small diameter than having Pam’s surgery modified to allow for a broader tube – a task which might well be impossible.

Here’s a picture of the tube I removed earlier today – it had been thoroughly blocked by the dried PEG food that had set there once the coupling connection had separated.  It took a lot to clean, and I even partially inflated the holding balloon for your benefit.  At least you can get some idea of its width.

Cheers until next time...

Well here it is, night-time on 3rd October 2013 and I reckon I have got a solution for the PEG problem - but only time will tell.  Firstly the picture... you can see, there is a black thing there, in addition to the ordinary stuff.

David Carson GAVE me a plastic box (normally used for electronic thingies). He wouldn't accept any payment, no matter how much I tried to offer and, from the sides of that box, I manufactured this plastic holding-clip, (currently attached to Pam's PEG tube with fishing line, but not for long methinks).

Here's another view.  The clip was cut from the end portion of the plastic box and while I'm aware that if there is a thorough blockage in the future, the PEG end (on the right in this pic) might be forced to slide to the left, up the tapered nozzle; but I doubt if it will.  As I said above, only time will tell.  ...and then I'll tell you, OK?

In case you're wondering, these photos were taken just after I connected and started Pam's nightly feed at 9:32pm a little while ago.  The pink cloth underneath is a folded tea-towel resting on her tummy intended to keep all the plastic apparatus (including the brand-new black plastic holding-clip) off that very part of her - you can even see a bit of her right hand.

Here's a picture of the clip on its own...

It's simplicity-plus, but I won't be able to test it properly until I get to change Pam's PEG tube once again - I managed to destroy the previous one in the process of making this thing. 

With another PEG to play with, I intend to clamp it shut, so that it appears blocked as far as the pump is concerned, fit the clip as shown above and then proceed to pump left-over PEG food.  If all goes well, the nozzle will stay in place and the feed flow will simply stop so that no drips continue in the pump's drip chamber.  With no further drips being evident to the pump's electric eye, the electronics of the pump will sound a very pleasing alarm - and the pump will stop.  I will be grinning, grinning, grinning!

I love looking after Pammy!

It's now only the 7th of October, but I've had enough doubts already about the downstream end, that I modified it.  See if you can see the difference...

What I did was to glue in an insert at the top end (in this view), simply in case the original didn't grip the PEG socket-piece firmly enough.  This one surely will!  Compare this (top end) with how it was in the previous picture (right-most end).  It still fits!

Monday, September 16, 2013

The things we do...

It has been a while since the last posting, but the reader perhaps should not think that nothing untoward has happened.  These days, those happenings are almost daily but it takes a build-up of them for me to finally find the time to detail even some of them on this blog.

Anyway, here goes…

On Saturday 7th September, after dealing with a second Pamela bladder infection (still being dealt with as I type) I was attempting to give Pam her Saturday morning meds when I discovered that the PEG tube was again blocked.  I say ‘again’ because several times over the previous weeks, it had also blocked – but those blockages could eventually be cleared using either/or pressure or holding my mouth the right way.  J
This time however, no amount of mouth-expression-altering or pressure, swearing or whatever could allow me to inject any of the meds.  So, off to hospital I took her.

I normally get TRIO Pam-care support on Saturdays from 10:30am until 1:30pm, but I rang them and cancelled it.  TRIO are wonderful in that while normally one has to give 24hrs notice of such variation, but if hospitals are involved, they wear it.  I LOVE them!  I had Pam to hospital by 9:30 and we were out by 11:15.  TRIO let me have Pam-care cover restored from 11:30…  (XXXX)
I watched the A&E doctor fit Pam with a new PEG tube and commented that upon seeing the intestinal fluids entering the new PEG tube made an x-ray unnecessary as far as I could tell, so “Why couldn’t I do this?”  He gave me a couple of the appropriate catheters (these catheter PEG tubes are almost identical to Pam's supra-pubic urine catheters except for their diameters - 0.7mm difference) to use if I was game – and went on explain that although he could test for the expected fluid acid content (for correct tube-positioning), however I couldn’t.  My reaction was that if I got it wrong, I’d simply bring her back to the hospital.  Anyway, the expected life of these tubes is 12 weeks.  Pam’s now-blocked tube had been in for 11 of them.  I therefore still had 11 or 12 weeks before I had to worry about it.

It wasn’t all that long ago that Pam was being air-lifted to Adelaide to get these tubes fitted, then Mildura Base Hospital, initially reluctantly, had a couple of goes, using it’s X-ray facility – and of course the one mentioned above that I watched with no X-ray.   Anyway, it was exactly ONE week later (not 11 or 12), that that PEG tube sprung a leak!
It was again a Saturday; it was during the morning med/hydration flush via the PEG, when it sprayed out from a mystery fissure just below connection nozzle.  It was irreparably stuffed!

Oh bugger, I thought – another hospital visit?  Ah, no!  I had a spare PEG tube.
I had never fitted one of these and was fully aware of the possibility of the inserted tube entering the abdominal space instead of the jejunum (intestine).  But I remembered seeing the intestinal fluids on the previous Saturday, so what could be different today?  As it turned out, nothing was.  It was even much more painless as far as Pam was concerned, than were her regular supra-pubic catheter changes that I have now been doing as a matter of course.

All was good, but if anything can go wrong, it will.  The PEG-tube is prohibited from expulsion by virtue of the provision of a water-filled balloon.  This balloon, however, is affected by intestinal peristalsis and fluid flow and if the tube is not taped securely in place, would completely get ‘sucked’ into Pam’s intestine were it not for the bulky nozzle piece at the top end.  10-15cm of free tube is necessary however, to properly access the nozzle when Pam is dressed and so medical tape is used to allegedly counter the peristalsis.  On the evening of the same day (Saturday 14th) as it turned out, I discovered that I hadn’t secured the tape sufficiently.  When I attempted to connect Pam’s PEG-tube with the overnight’s feed, I found the nozzle was hard up against Pam’s tummy.  No amount of pulling, however, would withdraw any of it.  Eek!
It was late, my head wasn’t clear, but the nozzle was readily accessible anyway with Pam in bed and so I connected and started the PEG-feed pumping, regardless - and went to bed.  But I awoke at 3am with the realisation that all I had to do was to deflate the holding-balloon and whatever was restraining the tube (presumably it was the balloon that had gone around and been caught at a corner in her intestine) would no longer be a problem.  Yeah!  All I had to do was to get up, get a syringe, empty the balloon, pull back the tube somewhat, re-inflate the balloon – and I could even do all of that without even disturbing the PEG-feed which was currently happening.  Ah, but that would probably disturb and awake my darling wifey!  So I lay there, watching the clock, until I eventually dosed off again at about 4:30am.

Yesterday morning (Sunday), I did all the usual things to get Pam up for the day; with the one extra task that I had lost sleep over hours earlier.  It was unbelievably easy to fix!
Ah, it was going to be a good day, I thought – and indeed, it was!

Just a little addition...  I called this post 'The things we do' and when I think about the things I do - and dare to wonder why - each morning when I enter the bedroom to terminate Pam's overnight PEG-feed, she greets me with a beautiful smile and a 'Good morning darling' welcome like this: why would I ever wonder?