Friday, February 22, 2013

A significant change? Oh, I do so hope!

Pam has been in hospital since early Tuesday and it’ll soon be Saturday.  Pam has been struggling to recover from her latest bout of aspirational pneumonia and I’m getting quite emotional as to what I have come to accept is her most dangerous daily activity – the nightly 10.5hr duration PEG feed.

Pam’s current PEG tube is badly worn and needs replacement, but there is talk of moving her PEG entry point so that the feed directly enters her small intestine, not her stomach.  This may end the risk of her random, potentially fatal, regurgitations and may well give her a longer life. 

I am keen on this happening in spite of the 'minor' risks (I might be wrong as to the implied insignificance albeit being possibly very significant) in imposing the procedure to her poor, frail and pneumonic body, but at least can her worn out PEG tube please be replaced if nought else is safe?
Nah, I'll yeild to the qualified medicos to decide – the emotional, ever hopeful nearest and loving relly (me) can come second – and I’ll wear it.
Here's how Pam looked today, Friday...
And now the day after...

I owe my eternal gratitude to the miracle workers at the Mildura Base Hospital.  Nevertheless, I'm hoping for a new PEG tube for Pam before she comes home - supposedly on Monday.  (It looks like being a dashed hope BTW.)
It's now Sunday 24th, 12:40pm.  Here's my Pammy with no longer the need of oxygen support...
Well, here it is Monday 25th.  This morning I took Pam's electric wheelchair to the hospital in which to bring her home, only to learn that she wasn't being discharged - she was instead being kept there until she had her PEG-site relocated (to her small intestine).  Apparently it will take a couple of days to determine if it can be done here or does she perhaps need to be air-ambulanced to Adelaide to have it done at Flinders Medical Centre?  Only a surgeon can decide - I'm over the moon at this potentially meaning the end of Pam's regurgitations, subsequent pneumonias and associated pressure-sores due to the required 10.5hr PEG-feed sitting posture, adopted to counter the regurgitation danger.
Only time will tell...
It's now Thursday 28th and time has indeed told me!
Pam was, yesterday, flown by Air Ambulance to the Royal Adelaide Hospital (not Flinders) for her PEG tube to be relocated from her stomach to her mid-jejunum (approximately middle of the small intestine).  The procedure is fairly common as I understand, but in Pam’s case, it is somewhat more complicated because of her frail condition.
I am optimistically encouraging all the hospital staff members who are phoning me for confirmation that the procedure is indeed to take place; with the knowledge that to refuse would be damning to Pam’s future; while realising that the procedure itself, involving a general anaesthetic, may well be even more problematic.  I am of the view that Pam will be back in a couple of days, so I’m staying put.  The Anaesthetist, Dr Lowry and the (student) Dietician, Erin Healy spent ages talking to me on my mobile and I thank them so very much for their empathy and kindness.
I’ll know; come 5pm tomorrow, if or not my optimism is justified.  If so, Pam will have a brand new PEG tube – so that’s a plus!  (…one of many plusses, BTW.)
One of the beaut things about the Royal Adelaide Hospital is that it's in the same city as our eldest daughter Sharon.  She took these pictures just prior to Pam's procedure.
Pam's obviously pleased to see Sharon...
I was told in the morning of Friday, 01/03/2013 that Pam's procedure would be done somewhere between 3pm and 7pm, but as it turned out, it was a nice and early 1:30pm.  It was all over before 5pm and I was extremely pleased that evidently all went well.  So off to the Farmer's Market went I to happily play euphonium with the band.
Here is a picture, taken by Sharon, as soon as Pam was settled back in her ward...
Pam was soon told that her oxygen saturations were down (a bit), so unsurprisingly, the efficiency of the oxygen supply was enhanced.  Pam still manages to smile however...
Pam's serene attitude has her being 'loved' by everyone who encounters her at the Royal Adelaide. I am indeed a lucky bloke to have her as mine.

I wonder when she will be returned to Mildura Base Hospital.  It's another "time will tell" thing, I suppose.

Well, there was more to Pam's return than I expected.  I was told that she would be coming home on Wednesday 6th and Sharon kept me in touch with Pam's progress on that score.  I was eventually told that Pam had been taken to the Departure Lounge at around 11am SA time, I was soon after told that the ambulance had taken her to the airport.

I did some estimated calculations and reckoned if I got to the part of MBH where the ambulance unloads, at about 2:00 - 2:30pm., I could organise it so that I was the first person Pam would see when the Ambos opened the back door of their ambulance.  Yep, I thought that would be a nice touch, so I was there at 1:45, waiting in the heat, outside the Ambulance dept., next to the Emergency dept.

After 1½ hours I was still waiting, but then I was told that the Air Ambulance booking sheet hadn’t included Pam and that she’d been taken back to RAH as a consequence.

I wasn’t at all pleased, but by 1pm Thursday 7th it was a case of déjà vu.  Yes, Pam had just been taken, once again, to the Adelaide Airport.  And so, by 2:45pm I was back outside the Ambulance dept., but being cleaver enough to spend a lot of waiting time in the Emergency dept., under the air conditioner – my head was sunburnt from the previous day.

Pam didn’t arrive and I wondered if she’d been taken back yet again.  A nurse rang and assured me that that hadn’t happened, but they had no idea where Pam was.

It 4pm I got word from the Ward 3 staff that Pam’s ETA was 4:50pm.  I thought “Bugger”, but it was under an hour away.  I had earlier bought a bottle of Coke from the canteen for $4, and thought that was a rip-off, nevertheless I went back and purchased a carton of chocolate milk.  Guess what - $4 again.  (I was later told that a nearby shop attached to Tri-Star medicos (next to the hospital) charge $7.50 for a pie and sauce!)  Anyway the 50 minutes were soon exhausted and still there was no sign of Pam.  An hour later, she arrived.  I learned that she’d come via Mt. Gambier, as another patient had to be dropped off there,

Pam looked lovely when the Ambos opened back doors.  They had told Pam that I had been waiting for a long time.  Well I had been – 4½ hours in total, but seeing Pam again was worth every second of the wait – believe me!

Here's my lovely Pammy just prior to leaving Royal Adelaide Hospital, one of many taken by Sharon.

It's now Monday, 11th March and I brought a happy Pam home this morning.  She was thrilled to be home, but wanted to go straight to bed instead of spending time in the lounge.  Given what she's been through, I'm not surprised.

I was surprised though, at the length of her new PEG tube.  Earlier I had been even more surprised when, in Adelaide RAH, her old PEG tube actually fell out, apparently of its own accord and was replaced with a new one (my minimalist hope, as you might recall).  Indeed, for a while, Pam had two new PEG tubes, the one into her old site, to her stomach and the other into her new site, to her jejunum.  I remember asking if this now-redundant tube could be used to occasionally drain Pam’s stomach fluids, which might otherwise still be a cause of future regurgitations.  I was told that it couldn’t be used for such and so I begged them to remove it, because I could foresee me and others inadvertently connecting Pam’s PEG feed to the wrong tube.  If it can happen, it’s only a matter of time before it does.

Anyway, getting back to the length of this new jejunum PEG tube (and PEG is probably the wrong term now BTW), I reckon it needed shortening, but figured that that might be impossible because the old tube was a tube within a tube – the inner for the food passage, the outer for water to inflate the holding-balloon that stops it inadvertently dislodging.  But Pam came home Monday and today is Wednesday; Pam, me and others having suffered the consequences of this ridiculously long PEG tube now for too long, so this morning I experimented and quickly satisfied myself that this skinny tube was a simple tube and not a tube-inside-tube, and confidently removed the end socket and cut 51cm from its length, bringing it back to about the same length as the old PEG tube.  Half a metre – gone!

Of course this begs the question; what stops this tube from popping out?  One day, I’ll probably ask someone – in the meantime the shorter length works just fine.

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