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 7^th 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 14^th) 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:

...so why would I ever wonder?