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.

Wednesday, February 20, 2013

As I said to Jeni, 'Here we go again.'

It’s been a long day – awoken at 2:30am on Tuesday 19th Feb with my darling Pam struggling to deal with the aftermath of an involuntary regurgitation of her PEG feed, and that it was just a short time thereafter that she asked me to disconnect the feed tube.  It's now 1:40am, Wednesday 20th and I'm yet to go to bed.

202ml of the intended 400ml were all that had been delivered, but Pam’s digestion was running slow and the stomach contents apparently had nowhere else to go but up.  It was a sudden change for both of us, from a peaceful sleep to Pam’s horrid noisy but ineffectual gurgling/coughing in a pathetic effort to dislodge that which had inadvertently been breathed into her trachea.
By 3:30am I decided to check Pam’s body temperature – I wasn’t sure how long it took aspiration into the lungs to thereby register itself as pneumonia, but all was well – temperature just 36.3oC, but Pam was getting so desperate to catch her breath during the incessant coughing fits that I finally got up, transferred her to the lounge and dialled 000 for an ambulance, without even requesting her permission.  Pam’s body-language said it all.
The ambulance officers were pleased that I’d set Pam up in the lounge as it was much easier to get her onto their trolley from there, compared to the awkward track from her bed.  Indeed, it was so decided to take Pam to Accident and Emergency Dept. at the Base Hospital for proper ventilation of her lungs, by now so sorely needed.
It was good to get Pam under the care of the wonderful staff at Mildura Base Hospital’s A and E dept.  It wasn’t overly delightful however, when after an X-ray analysis it was decided to keep Pam right there for the rest of the day as all the wards were ‘chockers’.  I was grateful for the care, but I lamented Pam’s impossibility of sleep in that noisy place, and I thought – ‘Here we go again’.
I sent a text message just after 5am to our two daughters and I was very surprised that at that hour of the day, I got a quick reply from No 2 daughter Jeni, who had been up dealing with little Ellie, crook with a virus.  Eventually, after some hours, I rang her and expressed my feelings about the frailness of my poor Pammy being thrust into the noisy A and E and left there, for there was nowhere else to take her.
I went back home to organise a few things, home-type things, bandroom things, a petrol for the car thing etc. and when I got back to the hospital I was pleasantly surprised (and relieved) to learn that Pam was no longer in Accident and Emergency, but instead, was now in Ward 3.  It wasn’t even lunch-time.  When I consider the angst of previous occasions – described in earlier posts below – it was flabbergasting to realise what had actually happened.  Ah, but I was to learn more!

When I got to Room 20, Ward 3, there was Pam rather 2nd hand and still with the hydrating ventialtion device up her nose.  I thought it was worth a picture, so here's a rather sick Pam still managing a smile...
It wasn't too long before I found out a likely reason for Pam's surprisingly fast relocation - having earlier thought of the phrase, it wasn't long after that in a phonecall to Jeni, I said "Here we go again" and then summarised to her the sorry experiences of the past.
Unbeknowns to me, Jeni had subsequently summarised my sentiments in a very pointed FaceBook commentary about the Mildura Base Hospital and that brought on a plethora of supporting comments from her friends; several of whom possibly having significant clout in relation to Pam's situation.  The essence of that situation is that Pam is very frail, very prone to infection, very prone to pressure sores and even more prone to lack of sleep and her needs should be obvious to the Triage staff that Pam's case should be high on the priority list for the next available ward bed.
I note that FaceBook hasn't helped many birthday parties, overrun and spoilt by gatechashers - but FaceBook may very well have influenced the good outcome regarding Pam's sorry potential.  What say you?

Wednesday, February 13, 2013

A Typical Torment

Well, I thought that was a good title, although it's hardly a reality. As you've probably gathered, looking after my Pammy's plethora of problems is what I do – and am happy to do.

For historical reasons (concerning another mob that I used to help out), my Wednesday respite leave is still very generous.  I am covered from 10am till noon by TRIO Support and from noon to 1:30pm by Mildura Council’s Personal Care Assistant Service (PCA).  Today however, I received a call to my mobile phone at 11:55am from Andria (of TRIO Support). Andria told me how Pam was complaining about wetting herself.

I thought quickly – mechanical problem, catheter not draining because of position or by being blocked – so I suggested that she (Andria) wriggle the suprapubic catheter, suprapubically in Pam’s suprapubic zone and hopefully so by clear the mechanical issue.  If that didn’t work, I said, put Pam back to bed with a bluey under her and I’ll sort it out when I get home.

No sooner had I hung up, I recalled that Andria was only there until noon, so I drove back home to take over (I don’t think the Council’s PCA are supposed to do anything like putting Pam to bed).  When I got home, I was pleased to see that Andria had gone – I think she had another client to go to anyway – and I had Pam setup in bed within 15 minutes.  Pam’s a good girl; the catheter wriggling wouldn’t have tickled, but it apparently had the desired effect.  The only negative was that Pam was sent to bed more than an hour prior to the norm – but she didn’t mind.  Neither did I – I still had an hour of respite leave, so back down town I went!  When I got home, Pam is pictured here pleased to see me.


As if the antagonism of the 11:55am catheter wiggling wasn't enough, by 5:30pm Pam was considering her regular Thursday shopping trip (in which she drives her electric wheelchair with the companionship of Therese from TRIO) and she didn’t want to have any more catheter problems, so she asked me if I would change it for a new one.

It wasn’t all that long ago that the discomfort of catheter removal and replacement warranted a period of serious pain-killing prior to the procedure, but lately, Pam bravely chooses to just grin and bear it.  Anyway, it had been 9 weeks since last being changed and usually these things start playing up after just 7 weeks – so this was a perfectly reasonable request.

As I type this, it’s 9:30am Thursday 14th and Pam’s sitting behind me all dressed up ready to go shopping (sadly, just one of her few remaining weekly highlights) – nevertheless my world can keep turning.