Headaches and Stroke effects

It has been a few months since the last input to this blog, but my lovely Pammy still strives to be happy and satisfied with her situation.  How she manages this ceaselessly amazes me, for those things which have developed to negatively affect her are apparently failing to do so.

Pam had a stroke in 2009 as a consequence of pneumonia following a common cold - this is referred to in detail elsewhere on this blog,  However, the stroke has affected the muscles on her left side, such that her left arm and hand are now very stiff and apparently difficult to enable via physical therapy.  In addition, Pam's head is strongly inclined to tip sideways, almost to rest on her left shoulder and is now almost impossible for one to tip it 'the other way'.

To counter this, when Pam is bedded each day (at 1:30pm) I have taken to tipping her body toward her right side by using cushions under her left side.  In this way, gravity tends to centralise her dear head - more permanently, I hope.  Here's the idea...

 

 

The yellow cushion (a stiff pillow) supports her shoulder and upper back.  Its effect is enhanced by the use of a rolled-up towel between it and her pink pillow.  That her upper torso inclines to the right and even with the bullying effect of the towel, Pam still declares that she is comfortable and happily stays this way until the following morning - when I get her up.  Now ask me why I love her!  Gravity is the weakest force known to science and yet here it does some gentle good.

 

Another antagonism has recently come along to attempt to give Pam grief - in the form of a recurrent headache.  I don't know what causes this - and my first thought was to the torturous gravity effort.  However, when returned to a tip-less state and given time for it to settle down, the headaches remained.

 

Two Panadol tablets 'might' give relief, but one Panadine Forte certainly does, but the codeine therein tends to constipate her bowel - so I'm between a rock and a hard place.  For some reason, Pam doesn't want to go to the doctors 'just for that'.  (That's an opinion I might eventually overrule.)

 

 

A change...

 

The arrangement as described above was tolerated by Pam for about 14 days (although I only told you about it yesterday), but today Pam announced that the yellow cushion, which was tilting her upper torso, was beginning to cause cramps in her neck.

 

Eek! The last thing I want to do is to hurt Pam and as you can see above, I have been uncomfortable about the 'bullying' towel.  Well!  It's the bullying yellow cushion that suddenly got the flick. 

 

Pam now lies somewhat flatter on her back with just the arrangement of the two pillows supporting her buttocks (to solve a pressure-sore issue) giving her hips a slight tilt to the right.  This has been the case for the last goodness-knows-how-long but the recently 'falsely damned' rolled towel remains as of half an hour ago and after a few days I'll supply a photo of whatever consequents from the missing yellow pillow.  It's a matter of time, but Pam is once again comfortable which is the major issue and yet the experimentation nevertheless continues...

 

What else can I do - hmm? 

Who said "If anything can go wrong etc"?

Last night, I wrote wrote this...

"To the appropriate RAH medical professionals re Pam Fiesley’s dislodged PEG tube,

When Pam came home some days after the insertion of her new Jejunum PEG tube, I found the tube ridiculously long as it was getting caught regularly, because of its length, around Pam’s abdomen and elsewhere during the normal manipulations of her, needed for her washing, dressing and lifter-sling implementations.

I eventually cut it to a reasonable length by removing 51cm off its original length, but did so only when I had determined that it was just a simple tube – not a tube within a tube as was the former stomach PEG.

Given that the previous tube allowed for a position-locking water-filled balloon as well as a separate feeding tube, it had me wondering how this new Jejunum PEG was being locked in place.  I did notice that originally a single stitch into Pam’s abdomen was apparently holding it in place, but it was only a day or so after that, that the attachment failed.  It wasn’t too many days later still that I noticed that that very suture thread wrapped around the tube was now about 1cm away from Pam’s skin – ie 1cm of the PEG tube had come out.

Pam’s wound site was being daily dressed by a visiting nurse and I asked her if she could please determine for me how this PEG tube was supposedly fixed in place, as it didn’t really seem to be.  Nevertheless, it still functioned as it should and the 1cm of exposed tube didn’t appear to get any worse.  Unfortunately the nurse didn’t get back to me re that inquiry.

This morning, when I disconnected Pam’s PEG feed equipment, the newish (3-week old) PEG tube seemed as it had for many days – unsurprising; but by the time I had Pam washed, dressed, lifted and transported to her lounge chair, the PEG tube had completely dislodged and I only noticed this when I reached under Pam’s nighty to find and expose the PEG nozzle ready for Pam’s 9:00am medication and hydration flush.  I found instead, that I had the entire tube in my hand.

At least I could now see at once what had been holding this tube in place – nothing whatsoever!  When I think about it, it surprises me that it actually stayed in place for the 3 weeks and 2 days.

Pam is extremely frail and the anaesthetic required for the initial insertion of her PEG tube was highly dangerous and life-threatening as it was then explained to me, so with respect, wouldn’t it have been reasonable to ensure that the tube was securely and permanently positioned, first time around?

I now politely beg you to use a new PEG tube with a better designed securing method.

Yours sincerely,

Eric Fiesley."

I gave it to Pam an hour ago to take to Adelaide as she is getting air-ambulanced back there to have another PEG tube fitted. Since writing that letter however, I have been giving thought as to what purpose that absurd length of PEG tube might have been used for, given I have now found out, the hard way, that there was nothing holding the tube in place.  I reasoned that the extra length could have perhaps been coiled and stuck to Pam’s abdomen with tape, leaving just a reasonable length for normal use.  This coil would certainly protect the entry point from the traumas that the nozzle-end gets in day-to-day use

However, when I took Pam back into my care, there was no coil – just ¾ of a meter of narrow rubber tube which (as I mentioned in the above letter) would get wrapped around Pam, her pillows, her leg – you name it – and regularly pull at the entry point.  I figured that there must be some sort of locking mechanism in place and that this ‘catching’ was needlessly testing it out and so I shortened it.  Nobody had explained why it was so long and, more importantly, that there was absolutely no locking mechanism in place.  Given the latter information, I might have reasoned that the additional length was for coil-buffering.  I dare say, I’ll find out in the next day or so if they choose to realise at last that proper communication is a good idea.

Here is a picture of the PEG tube that came away. It was sitting on a Mildura Base Hospital bench when I took the picture (they wanted to keep it, for some reason).  It would seem at first site that the 'T" piece which would have been in Pam's jejunum, would have been ample as a locking device, but sadly it’s nothing of the sort.

It’s made of the same soft rubber as the rest of the PEG tube, and has also been split completely along its length to allow an even distribution of the feed.  This slit however, makes it even more flimsy and entirely useless as a locking device.  Remember, the tube used to be 51cm (duh, that’s over ½ a metre) longer – and maybe I should have left it so.  Who knows?  As I said above, I dare say I'll soon find out!


A couple of days have come and gone, and there's quite a bit to add...

I am now writing this on Saturday, 30th March and yesterday (Good Friday) Pam arrived back home by ambulance (via an ultra-short pause at MBH following the flight) and was in my care at 3pm.  This was the scheduled time for one of Pam's 200ml hydration flushes and this particular one is not medicated.  All went well although it was annoying that the input nozzle didn’t seem to be designed for the syringes I use for hydration.  It was quite ‘loose’.

5pm came, and another (this time medicated) hydration flush was uneventful as was the 7pm medicated flush.  But at 9pm when I gave Pam a 50ml pre-flush of Nexium anti-nausea, prior to her 9:30 PEG feed, the tube promptly blocked and no amount of effort would overcome the blockage.  There was no point attempting to pump her nightly PEG feed because this blockage seemed to be meaning business – and so I rang 000 for an ambulance.

Pam was taken to Mildura Base Hospital (MBH) and they spent ages trying to unblock the tube.  I reckoned that it was probably the Nexium, dissolved as it was to free the tiny time-release capsules and it was them, thought I, that had caused the blockage.  I later learned some confirming input in that the gauge of this PEG is significantly less than the Stomach PEG that it replaced and the reason that it hadn’t blocked with Nexium prior to my doing it was that the hospital staff of both hospitals, were crushing the Nexium tablets as they did with every other tableted med.  This may have avoided the potential blockage, but was a definite no-no according to the instructions written on the packet.  (Hospital staff personnel are seemingly oblivious to instructions on tablet packs, probably because they only deal with the foils already taken from the packs, and a tablet is a tablet.)  I have also discovered since beginning this paragraph the gauge of the blocked PEG is vastly smaller than the one it replaced i.e. the one that fell out.

The yellow tube is from the tube that fell out - simple single tube.  The bluey-grey one (i.e. the one that blocked yesterday) is compound, but clearly not a tube-within-a-tube as was the stomach PEG.  Here, the tiny hole is for the locking balloon and the larger of the two is for food flow.  Compare this diameter with that of the yellow.  No wonder it blocked, in hindsight.

This has me wondering about the new one fitted today.  It's different in appearance, but this sort of a test is not appropriate ... yet.

It was getting late and the ambulance officers offered to take Pam home to bed rather than leave her on a trolley all night as the hospital had no bed space.  So at 2:50am this morning, I put Pam to bed.  The ambulance guys then recommended that I make an early booking (8am) so that they could get Pam back to the MBH at a reasonable time to either succeed with the unblocking or to Air Ambulance Pam back to Adelaide for a new PEG.

So I got up at 7:30 this morning, showered and shaved and did what I was told.

Pam was in the ambulance at 8:30am and home again at 4pm – seven and a half hours it took, to decide that the old PEG was stuffed and had to be taken out.  A new one subsequently fitted (without Pam going to Adelaide) and eventually X-rayed to check for correct insertion.  The minutes (in bulk) ticked by and at long last we were given the nod that the radiologist was satisfied that the PEG tube was indeed inside Pam’s Jejunum.

Whacko!  I applied the fancy dressing over the PEG site, rather than wait any longer – while the staff booked the ambulance to take Pam home.  That was at about 2:30pm and I decided to dash home to warm the place up and prepare for Pam’s alleged immanent return.  As I said – at 4pm, she turned up.  (Not quite as immanent as I’d hoped for!)

Pam’s now happy and hydrated – she had had nothing of the sort since 7pm the night before.  As I write this, Pam is watching ‘Packed to the Rafters’ which I recorded for her.

It’s occurred to me how intuitively appropriate is the main title of this blog – but I fear that most of the subsequent postings will be of a similar ilk.

Pam was happy to be home and the old routines quickly settled into place, but within a day or two it seemed that Pam’s colostomy bag was no longer getting any input.  A day or two later, Pam noticed that her colostomy base-plate was beginning to lift and so I replaced it; but for the first time ever, the bag that had been attached was still pristine and so I clipped it back on. (!)

The next day, still nothing – the day following, Friday 5th April, more of the same:  I had lost count of how many days it had been with a perfectly pristine bag.  These days, the upper surface of the bags is transparent and I could see l Pam’s stoma within, still clean as a whistle.  But I woke at 4:30am Saturday (yesterday) and the gentle clicking of the feed pump got me very disturbed.  I figured there was upwards of 2,500ml of PEG food inside of Pam - and nothing was emerging.  With the pump still active, it was just getting to be a worse situation, I reasoned.  I even began to fret that the PEG might actually never have been put into Pam’s jejunum, but might instead be simply emptying into Pams abdomen space;  so I called 000 for an ambulance.

I think the ambulance staff was surprised at the cleanliness of the colostomy and the approximate number of days for which that had been the case and so happily took Pam to the Base Hospital to see what could be done.

When I got there, I was quickly relieved to learn that if the food had indeed been emptying into Pam’s abdomen space, it would have been painful – but it wasn’t.  An X-ray confirmed that the PEG tube was where it was supposed to be and that Pam was (merely) terribly constipated.

Pam was admitted to Ward 3 (room 17), stayed the night at the Base and I volunteered to look after many of the hydration flushes, four of them being medicated and also Pam’s overnight PEG feed.  I get to bring her back home after lunch today, Sunday 7th.

What’s next, I wonder?

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 7^th 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.

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

It’s been a long day – awoken at 2:30am on Tuesday 19^th 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 36.3^oC, 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?

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 14^th 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.

Trials of the very New Year

My darling Pammy returned home from hospital on Monday 7th and after 3 subdued days was once again regurgitating her overnight PEG feed just before it was due to finish yesterday morning at 7:20am.

It sounded like a very substantial event and I sat up expecting to see stomach contents all over Pam’s bedding – ah but no.  Pam managed to keep her mouth closed and was busily swallowing its contents as I quickly reminded her “Don’t breathe in whilst you’re swallowing!”  But she apparently already had.

What followed next was the pitiful experience of watching poor Pam trying to cough up that which had gone down the wrong way.

I thought “Here we go again” and even notified our daughters to expect their Mum being shortly returned to hospital.  The stress of coughing certainly knocked Pam around, causing her to become excessively tired – and all that could be done (before seeking medical help) was to regularly monitor her temperature to detect the almost-inevitable onset of subsequent aspiration pneumonia.

I’m writing this at 5:45pm, Friday 11^th January and so far, her temperature has been stable and Pam appears bright and happy during the short moments she is awake.


Adding to the above story, it's important to mention that I am aware that one of the main dangers to Pam is her nightly PEG feeds. Prior to Pam's most recent visit to hospital, she had been accepting 500ml of PEG feed delivered at a rate of 48 ml/hr. That actually used roughly two and a half boxes of "Resource 2.0" (it used to be "Novasource 2.0" until a week ago - the change being imposed by the supplier), with the extra half box volume having to be discarded.  However, when I got Pam back from hospital I noted they'd only been giving her 2 boxes each night - and that got me thinking...

Pam returned home with a healthy weight of 61.6kg. This is in excess of the 60kg recommended by her Dietician and so I reasoned it would be OK, at least for a while, to not only keep the feed at two boxes (registering on the PEG feed pump as 400ml even though each box allegedly contains 237ml) – and this represented a 20% reduction of food intake per night.  Now the prospect of it finishing the feed in the wee-wee hours of the morning got me realising that by reducing the feed rate also by 20% would have the feed finishing at a time to which I was accustomed.  So as well as being convenient, it was a potential double remedy for Pam’s nausea – she was to get a lesser amount delivered at a slower rate.

That was the regime until the latest regurgitation on the morning of Thursday 10^th, but since this event I’m lucky to get Pam to accept just one box (registering as 200ml) and being delivered at just 20ml/hr.

I have discussed this with our GP and Pharmacist and from this coming Wednesday, Pam’s anti-nausea medication will not be Motilium, three times per day nor Pramin, four times per day – but instead each of the above on alternate days.  It will be Pramin one day, Motilium the next etc.  Pam accepts that when this regime is in place she’ll once again be brave enough to attempt consuming 400ml at 40ml/hr.

I hear you – you want to know why wait until Wednesday?  Well, it’s the normal weekly start day of Pam’s medication dosette packs and while I acknowledge that the Pharmacist (Tim DeBoo of Flannigan and Poole Pharmacy, Lime Ave Mildura) was willing to update the dosette pack that I was currently using, I reckoned (with Pam's agreement and without medical backup) the little potential weight loss would not be an issue.

 

A happy Christmas and a weird New Year

Well, Christmas this year was celebrated earlier than usual because of family commitments requiring them being elsewhere on Christmas Day.  Friday 21st was our decided-upon family gathering.

The usual 'feasting' and gift-exchanging happened on that Friday and Pam as usual, missed out on any and all of the food.  But she had secretly anticipated this and had organised something for herself to eat on Christmas Day itself (as she reckoned she would still be feeling so well). To my great surprise on Christmas Day, with everyone else gone, Pam announced that she wanted me to prepare a Pavlova for her!

Meringue, being crumbly, is the last thing I imagined she could cope with, but of course that's what constitutes the base of any Pav. Pam had bought a box of single-serve Pav ‘nests’ and she reasoned that the crumby nature of these could be counteracted by lots and lots of double-whipped cream and so she had bought a container of that as well.

For topping, in the fridge she had arranged for a sealed bag of chilled fruit to be there, with which to decorate the cream – all these things purchased and put in place without my having any idea whatsoever.

Well, Pavlovas are the easiest of things to prepare and so I quickly assembled one and took it to Pam who was still sitting in the lounge. It turned out that poor Pammy couldn’t quite manage it, so I got a teaspoon and spoon-fed the Pav to her – which she absolutely LOVED!!!  This was the first food that she had taken orally for years and Pam reckoned the taste was fantastic.

She munched it all up and swallowed it without any drama whatsoever.

Pam liked it so much that she asked for another one next day and that was a huge success also.

But that was Wednesday, December 26.

On Sunday, December 30, 2:25AM, Pam awoke me by the sound of her attempts to deal with the consequence of nausea, brought about by her body poorly coping with that night’s overnight PEG-feed.  Her pathetic attempts to vomit were merely bringing PEG food up into her mouth, which she would then try to re-swallow.

It’s the old story – breathing whilst swallowing allows food into her wind-pipe and causes subsequent hugely attenuated ‘violent’ coughing.  This coughing, attenuated because of her MS, is quite ineffective and causes Pam more and more stress in her coughing effort.  She quickly tires but keeps coughing pathetically in spite of her exhaustion.  This stress took hours to fully develop and I eventually called for an ambulance.

The ambulance arrived and the medical personnel reviewed Pam, who had strangely settled down prior to their arrival and seemed to be doing well – her temperature and other stats were not abnormal but they suggested it might still be wise to have her checked out at the hospital.

Well, Pam didn’t want to go and I couldn’t blame her. Past experience had had her laying on a trolley for days on end in a noisy Accident & Emergency facility; no fun whatsoever and no sleep possible to boot!  And so it was agreed that she could stay in my care for now on the promise that I would call again immediately if Pam’s condition worsened.  It was 5:00AM when the ambulance left.

Pam still had a gurgly throat, especially while she slept and she continued to have frequent bouts of one or two almost-productive coughs.  But she seemed diminished in what she could do compared with how she was prior to the 30^th.  For example, she could no-longer manipulate the control buttons on her lounge room chair.

By Wednesday 2^nd January, Pam’s respite carer rang me to tell me she thought Pam’s temperature was a little high (at 37.5^oC) and so I came home and continued to monitor it. That temperature didn’t frighten me all that much except for the fact that that same thermometer measures my temperature at 35.5^oC – but Pam was still looking a little the worse for wear, so I rang the Nurse-On-Call for advice.

As a consequence it was recommended that Pam be taken to hospital for a check-up and Pam, by this time, actually agreed.  So at 1:15PM I again rang for an ambulance and Pam was subsequently whisked off to hossy.

The Accident and Emergency Dept seemed to be unusually quiet when I entered, following Pam (being trolleyed in) and she was settled into suite No 10 and subsequently X-rayed. This X-ray revealed she had aspiration pneumonia once again, this time in her other lung.  And so she was admitted and sent to a ward by 9PM.  (I was amazed – not only was the A&E Dept. unusually quiet; but this hopelessly under-designed hospital actually had bed-space available for Pam.)  I shut my mouth and lapped it all up!

That was Wednesday and here I am writing this on Friday.  Pam’s as well as can be expected and I’m anxious for her return.

Here's a picture of Pam in hospital...