Pam's return home was accompanied with a plethora of paperwork, much of which was to do with a new regime of feeding and flushing for her stomach PEG. Life gets exciting and when one realises that the wonderful ‘routines’, ‘habits’, ‘rituals’, ‘monotony’ that had achieved some degree of hallowed perfection over the last many months, had just been thrown out the window, one has to get philosophical; smile surreptitiously and see what he can resurrect out of the mess.
Well, what can I resurrect if I now give Pam her first feed at 7am (when I used to wake up at 7:30), followed by a medicated PEG flush 2 hours later and in another 2 hours another feed and so on for four feeds and three in-between PEG flushes all to be finished by 8pm. Of course, the four feeds have their own pre and post flushes don’t forget; and if I seem to be a bit niggly, don't forget how Pam could feel and with much more justification - if she so chose to. Her stoicity keeps me firing happily however, believe it or not.
It occurs to me that no reader of this would ever give a damn as to the 'routine' detail, and it’d take way too many key-strokes to describe it in any detail anyway, so we’re ALL happy, hey – so therefore I’m not telling!
(There are many postings for this blog - please check the Archive for those not displayed here.)
Sunday, February 27, 2011
Sunday, February 20, 2011
And it's not even winter
(...but this is a silly summer!) Living with someone in the later stages of MS has its surprises, however sometimes the surprises aren't much fun, more's the pity. I've maintained for years a document to help others who may come in to care for Pam to get some idea of what normally happens. This recently had to be updated (yet again) because of the Dietician’s recommendation of four daily cans of PEG-fed food instead of the customary three.
To ease the difficulty of having an odd 2/3 can or 1/3 can sitting in the fridge as the day wore on, in order to deliver one and one third cans per feed, it was agreed between myself and our most frequent carer that starting the day with two full cans in the supply bag will obviate this difficulty, with reasonable care. After all, ‘one and a third’ cans per meal is OK on average, but if a push comes to a shove, Pam is known to have been able to take two cans at once without even noticing. Ah, but cutting one corner fouls another. When the pump was in play, bolus feeding was easily programmable, but with a gravity system this luxury doesn't exist. To deliver one and one third cans from a bag containing two cans worth takes some deliberation (regardless of the broadness of potential tolerance).
The truth is, just as it was with the pump and my subsequent errors with it thus forcing me to abandon it, it didn't take too long for a miss to occur in stopping the PEG feed at the correct moment and Pam being delivered (slightly) more food than she was supposed to have and as it turned out, this time, was quite uncomfortable with. I came home to find Pam dry-reaching and gagging, and for a while at least I thought the (rather minor 25ml) over-feed was the crazy cause. Well if indeed that was the case, it'd soon settle down in under an hour or so and that’d be that, so I thought.
Well Pam just got gradually worse. The over-feed (that insignificantly slight over-feed) happened Friday morning, but Pam was regurgitating almost continually not because of that, but because she'd evidently earlier caught a vomit-bug of some sort. The feed error was merely coincidental and unfortunate. Last night (Saturday night) as we were in our adjoining beds, Pam was definitely not normal. I feared she had aspirated some swallowed vomit which accounted in my mind for her rattly breathing. I turned on the light and watched her breathing - tummy rising and lowering, not her chest - and eventually announced I was going to phone for the ambulance. Pam didn't argue too much and in due course they were here. They quickly determined that Pam's temperature was sky high, as was her heart rate and promptly took her off to hospital.
Mildura Base Hospital is hard-pressed to cater for emergencies and yet the staff are calm and professional. They soon had Pam's nausea well and truly smothered with some wonderful mysterious substance, but as I type this in the early hours of Monday morning, Pam lies in a bed, as a hospital admitted patient, still in the ED Dept; such is the hard-pressedness of that which I wrote. (In spite of the time stamp, this update was published at 12:55am, Monday 21 Feb 2011 ADST)
Here I am once again adding to this - it's now Wednesday 23rd February and I, just this morning, loaded both the wheelchair and Pam's coming-home clothes into the car (van) with a half expectation of her hospital discharge being today. I had suggested to the medical staff earlier that if Pam needed more time to recouperate, could I invoke our private health cover and have her tranferred to Mildura Private Hospital? I was told that that was entirely up to Dr. Terry Cook, Pam's appointed treating specialist (Terry is a Physician and I've known him for decades). Regardless of this, it looks as though Pam comes home with me tomorrow.
What happened, I hear you ask? - well the cause of the vomit-bug is still a mystery as far as I am aware, but may have come from a bladder infection (a common event in view of Pam's supra-pubic catheter). Anyway, the vomiting eventually aspirated into Pam's left lung and caused an infection which would have become pneumonia if it hadn't been picked up when indeed it was. Pneumonia is life-threatening to otherwise completely healthy people, but I fear it would be fatal to Pam in her frail condition. Here's a picture of how she looked on Monday, still with an infection-induced fever...
(Isn't she beautiful though?)
Pam responded well to the antibiotic therepy and is now just waiting to feel strong enough to come home - Terry says,"Fair enough!"
(There are many postings for this blog - please check the Archive for those not displayed here.)
To ease the difficulty of having an odd 2/3 can or 1/3 can sitting in the fridge as the day wore on, in order to deliver one and one third cans per feed, it was agreed between myself and our most frequent carer that starting the day with two full cans in the supply bag will obviate this difficulty, with reasonable care. After all, ‘one and a third’ cans per meal is OK on average, but if a push comes to a shove, Pam is known to have been able to take two cans at once without even noticing. Ah, but cutting one corner fouls another. When the pump was in play, bolus feeding was easily programmable, but with a gravity system this luxury doesn't exist. To deliver one and one third cans from a bag containing two cans worth takes some deliberation (regardless of the broadness of potential tolerance).
The truth is, just as it was with the pump and my subsequent errors with it thus forcing me to abandon it, it didn't take too long for a miss to occur in stopping the PEG feed at the correct moment and Pam being delivered (slightly) more food than she was supposed to have and as it turned out, this time, was quite uncomfortable with. I came home to find Pam dry-reaching and gagging, and for a while at least I thought the (rather minor 25ml) over-feed was the crazy cause. Well if indeed that was the case, it'd soon settle down in under an hour or so and that’d be that, so I thought.
Well Pam just got gradually worse. The over-feed (that insignificantly slight over-feed) happened Friday morning, but Pam was regurgitating almost continually not because of that, but because she'd evidently earlier caught a vomit-bug of some sort. The feed error was merely coincidental and unfortunate. Last night (Saturday night) as we were in our adjoining beds, Pam was definitely not normal. I feared she had aspirated some swallowed vomit which accounted in my mind for her rattly breathing. I turned on the light and watched her breathing - tummy rising and lowering, not her chest - and eventually announced I was going to phone for the ambulance. Pam didn't argue too much and in due course they were here. They quickly determined that Pam's temperature was sky high, as was her heart rate and promptly took her off to hospital.
Mildura Base Hospital is hard-pressed to cater for emergencies and yet the staff are calm and professional. They soon had Pam's nausea well and truly smothered with some wonderful mysterious substance, but as I type this in the early hours of Monday morning, Pam lies in a bed, as a hospital admitted patient, still in the ED Dept; such is the hard-pressedness of that which I wrote. (In spite of the time stamp, this update was published at 12:55am, Monday 21 Feb 2011 ADST)
Here I am once again adding to this - it's now Wednesday 23rd February and I, just this morning, loaded both the wheelchair and Pam's coming-home clothes into the car (van) with a half expectation of her hospital discharge being today. I had suggested to the medical staff earlier that if Pam needed more time to recouperate, could I invoke our private health cover and have her tranferred to Mildura Private Hospital? I was told that that was entirely up to Dr. Terry Cook, Pam's appointed treating specialist (Terry is a Physician and I've known him for decades). Regardless of this, it looks as though Pam comes home with me tomorrow.
What happened, I hear you ask? - well the cause of the vomit-bug is still a mystery as far as I am aware, but may have come from a bladder infection (a common event in view of Pam's supra-pubic catheter). Anyway, the vomiting eventually aspirated into Pam's left lung and caused an infection which would have become pneumonia if it hadn't been picked up when indeed it was. Pneumonia is life-threatening to otherwise completely healthy people, but I fear it would be fatal to Pam in her frail condition. Here's a picture of how she looked on Monday, still with an infection-induced fever...
(Isn't she beautiful though?)
Pam responded well to the antibiotic therepy and is now just waiting to feel strong enough to come home - Terry says,"Fair enough!"
(There are many postings for this blog - please check the Archive for those not displayed here.)
Sunday, February 13, 2011
Variety is the Spice of Life...
- but monotony isn't necessarily the sour grapes of depression, however monotony breeds routine (much more efficiently than could familiarity ever breed contempt, at least in my case) and routine imposes itself relentlessly without deliberation or forethought.
The art is to recognise that if what you’re doing is worthwhile and if you do it the same way (more or less) every day, then you’ve probably worked on it to get it, over time, to be so efficient. Indeed, this is where I am and it’s been noticed in my case by experts and novices alike. I will deal with some of my weird routines as a later addition.
Why am I bringing this up? Well, it’s because routine has a dark, dark side – read on…
Since Pam’s stroke two winters ago, as you know (if you’ve read this upside-down blog bottom to top) she was subsequently fitted with a stomach PEG feeding tube. To use this properly, the tube must be flushed through with water before and after the liquid food is delivered (via the pump). Emma Staniford, the Mildura Base Hospital Dietician, determined that for Pam to get the required fluid intake, the pre and post water flushes should be 3 (not 1) X 60ml syringes each. (A 50ml rated syringe will hold 60ml when full).
Don’t be confused by these figures, the point I’m trying to make is the NUMBER of openings and closings of the clamp on the PEG tube, believe it or not.
Each time a syringe or feeding tube is inserted into Pam’s PEG tube, the tube must be clamped until insertion, opened during insertion (otherwise the insertion won’t go completely in), the liquid (water or food) delivered, then the clamp once again closed. If one is delivering 3 pre-flushes, for example (and that happens 3 times a day, 7 days a week), one finds oneself opening, closing, opening, closing ad nauseum and this quickly becomes monotony, not routine.
Over time I have noticed that I’ll make a clamping error about once per fortnight. For example, I’ll attempt to inject a syringe-full of water and then notice the plunger will not budge. It doesn’t take Einstein to figure out I forgot to open the clamp. Alternatively, I’ll remove a syringe and get my fingers wetted with a slight water discharge from the PEG – hallelujah, I forgot to close the clamp. And so it goes – as I say, I reckon I make a little blue like this about once a fortnight. Now let’s do some maths – 3 pre-flushes, 1 pump feed followed by 3 more post-flushes is 7 openings and closings of the clamp per meal, which is 21 per day. I estimate I make an error about once a fortnight, that's once in every 14 x 21 = 294 clamp closing operations per fortnight. One 7th of these is the serious error of closing the PEG clamp prior to turning on the pump. With the assumption of everything else being equal, this should happen one seventh of once a fortnight, namely once every fourteen weeks. In other words, one serious prang every 2058 closings. Well guess what – if there’s a probability like this that it will happen, you can bet it does!
The significance if this particular clamp-closing error cannot be overstated – as soon as I start the pump, it is a fixed delivery pump and within less than a minute it will have blown the plug out of the (not currently used) medication-input tube on the PEG simply because the liquid food has nowhere else to go and is being force-fed. Here is a picure of what I am talking about - the feed-tube enters from the lower left, the PEG opening (and open plug) is evident and attached to it slightly above and to the left is the plugged medication input. Farther up the PEG tube is the clamp.
I will have replaced Pam’s sheet and blankets over her by then, settled her and retired to the lounge room to answer emails, watch TV or write this blog. About 30min later, Pam will ring her bell to get me to come because she feels ‘wet’. I lift the blankets and see a mini-lake of liquid food soaking into Pam’s buttocks-cushion, the bottom bed sheet, her knickers, her top – you name it. It’s a mini-disaster consequenting from an innocent clamp-closure that would otherwise be insignificant. I say MINI-disaster because I can easily think of a lot worse disasters potentially awaiting us, but this error requires me to get the lifter and get Pam off the bed while I change everything. Isosource liquid food takes FOREVER to wash out of bedding – and remember, Pam still hasn’t been fed!
This error makes me very particular about that clamp for a few weeks if not months, but the mathematics eventually applies itself and off I go making that mistake again and again and again… The last time it happened, I thought, "Enough’s enough! I’m not getting any younger and as I grow older, I’ll cetainly be making this horrible error ever-more frequently, so it’s got to stop NOW!"
Gravity Feeds
Over the many months since the PEG procedure, each morning as I fitted the first food bag and feeding tube of the day into Pam’s PEG input, I would notice that it would gravity feed, quite quickly until I subsequently fitted the feeding tube to the pump prior to activating it. I had heard of gravity feeds before – namely, using the 50ml syringe tubes without their plungers, hand held for each of the 5-tube (250ml) feeds. That idea never really grabbed me – I remember actively suggesting getting the pump in lieu of that labour-intensive gravity-feeding for Pam, if appropriate funding could be allocated. (Funding is another issue I should explain using this blog, but will keep it for a future edition).
And so now here I was many months later with the great brain-wave – would not the bag and feed-tube, manufactured specifically for the pump, suffice for a hands-free gravity feed?
I won’t bore you with what happened next, except to say it worked like a charm. The drip-chamber in the tube was originally used by the pump’s processor to determine whether there was flow or not – and that’s exactly what I now use it for; as a visual aid.
This gravity feeding initially* delivered the 250ml in around 40 minutes c/f the 60 minutes via the pump, but that’s a boon, not a bane. Also, if per chance I inadvertently close the PEG tube as before, the lack of drips tells me straight away and even if I don’t look, there’s no disaster because it’s simply gravity fed.
Just last week, I returned the pump to the Dietician and made an appointment with her to explain what I’d done and why.
*Emma, the Dietician, concerned about Pam’s weight, has now recommended 4 cans of Isosource over the 3 daily meals, so now the delivery via the gravity feed takes around 50 mins, allowing for the extra food per serve – it’s still all good! I’m smiling!
(There are many postings for this blog - please check the Archive for those not displayed here.)
The art is to recognise that if what you’re doing is worthwhile and if you do it the same way (more or less) every day, then you’ve probably worked on it to get it, over time, to be so efficient. Indeed, this is where I am and it’s been noticed in my case by experts and novices alike. I will deal with some of my weird routines as a later addition.
Why am I bringing this up? Well, it’s because routine has a dark, dark side – read on…
Since Pam’s stroke two winters ago, as you know (if you’ve read this upside-down blog bottom to top) she was subsequently fitted with a stomach PEG feeding tube. To use this properly, the tube must be flushed through with water before and after the liquid food is delivered (via the pump). Emma Staniford, the Mildura Base Hospital Dietician, determined that for Pam to get the required fluid intake, the pre and post water flushes should be 3 (not 1) X 60ml syringes each. (A 50ml rated syringe will hold 60ml when full).
Don’t be confused by these figures, the point I’m trying to make is the NUMBER of openings and closings of the clamp on the PEG tube, believe it or not.
Each time a syringe or feeding tube is inserted into Pam’s PEG tube, the tube must be clamped until insertion, opened during insertion (otherwise the insertion won’t go completely in), the liquid (water or food) delivered, then the clamp once again closed. If one is delivering 3 pre-flushes, for example (and that happens 3 times a day, 7 days a week), one finds oneself opening, closing, opening, closing ad nauseum and this quickly becomes monotony, not routine.
Over time I have noticed that I’ll make a clamping error about once per fortnight. For example, I’ll attempt to inject a syringe-full of water and then notice the plunger will not budge. It doesn’t take Einstein to figure out I forgot to open the clamp. Alternatively, I’ll remove a syringe and get my fingers wetted with a slight water discharge from the PEG – hallelujah, I forgot to close the clamp. And so it goes – as I say, I reckon I make a little blue like this about once a fortnight. Now let’s do some maths – 3 pre-flushes, 1 pump feed followed by 3 more post-flushes is 7 openings and closings of the clamp per meal, which is 21 per day. I estimate I make an error about once a fortnight, that's once in every 14 x 21 = 294 clamp closing operations per fortnight. One 7th of these is the serious error of closing the PEG clamp prior to turning on the pump. With the assumption of everything else being equal, this should happen one seventh of once a fortnight, namely once every fourteen weeks. In other words, one serious prang every 2058 closings. Well guess what – if there’s a probability like this that it will happen, you can bet it does!
The significance if this particular clamp-closing error cannot be overstated – as soon as I start the pump, it is a fixed delivery pump and within less than a minute it will have blown the plug out of the (not currently used) medication-input tube on the PEG simply because the liquid food has nowhere else to go and is being force-fed. Here is a picure of what I am talking about - the feed-tube enters from the lower left, the PEG opening (and open plug) is evident and attached to it slightly above and to the left is the plugged medication input. Farther up the PEG tube is the clamp.
I will have replaced Pam’s sheet and blankets over her by then, settled her and retired to the lounge room to answer emails, watch TV or write this blog. About 30min later, Pam will ring her bell to get me to come because she feels ‘wet’. I lift the blankets and see a mini-lake of liquid food soaking into Pam’s buttocks-cushion, the bottom bed sheet, her knickers, her top – you name it. It’s a mini-disaster consequenting from an innocent clamp-closure that would otherwise be insignificant. I say MINI-disaster because I can easily think of a lot worse disasters potentially awaiting us, but this error requires me to get the lifter and get Pam off the bed while I change everything. Isosource liquid food takes FOREVER to wash out of bedding – and remember, Pam still hasn’t been fed!
This error makes me very particular about that clamp for a few weeks if not months, but the mathematics eventually applies itself and off I go making that mistake again and again and again… The last time it happened, I thought, "Enough’s enough! I’m not getting any younger and as I grow older, I’ll cetainly be making this horrible error ever-more frequently, so it’s got to stop NOW!"
Gravity Feeds
Over the many months since the PEG procedure, each morning as I fitted the first food bag and feeding tube of the day into Pam’s PEG input, I would notice that it would gravity feed, quite quickly until I subsequently fitted the feeding tube to the pump prior to activating it. I had heard of gravity feeds before – namely, using the 50ml syringe tubes without their plungers, hand held for each of the 5-tube (250ml) feeds. That idea never really grabbed me – I remember actively suggesting getting the pump in lieu of that labour-intensive gravity-feeding for Pam, if appropriate funding could be allocated. (Funding is another issue I should explain using this blog, but will keep it for a future edition).
And so now here I was many months later with the great brain-wave – would not the bag and feed-tube, manufactured specifically for the pump, suffice for a hands-free gravity feed?
I won’t bore you with what happened next, except to say it worked like a charm. The drip-chamber in the tube was originally used by the pump’s processor to determine whether there was flow or not – and that’s exactly what I now use it for; as a visual aid.
This gravity feeding initially* delivered the 250ml in around 40 minutes c/f the 60 minutes via the pump, but that’s a boon, not a bane. Also, if per chance I inadvertently close the PEG tube as before, the lack of drips tells me straight away and even if I don’t look, there’s no disaster because it’s simply gravity fed.
Just last week, I returned the pump to the Dietician and made an appointment with her to explain what I’d done and why.
*Emma, the Dietician, concerned about Pam’s weight, has now recommended 4 cans of Isosource over the 3 daily meals, so now the delivery via the gravity feed takes around 50 mins, allowing for the extra food per serve – it’s still all good! I’m smiling!
(There are many postings for this blog - please check the Archive for those not displayed here.)
Sunday, November 28, 2010
Her Story Disseminates
A casual email to Rebecca Kenyon, Managing Editor, Periodical Publications, MS Australia had a surprising repercussion as it turned out. All I did was to draw her and her staff's attention to this blog and before I knew it, I was sent a draft of an article to be possibly published in their upcoming quarterly InTouch Magazine. The draft was impressive but pointed out a possible space allocation problem. Nevertheless, before too many weeks passed, Kable Fransen, MS Connect Information Officer, emailed me with...
"Just read your article in the MS magazine InTouch – fantastic. Congratulations to you and Pam both, mate!"
I thought, whacko that's great, now when do I get my copy of InTouch? Ah, but I'm a sticky-nose and wondered if it was Googleable - after all, what isn't these days? Sure enough I found it - it's clickable here and the story is on page 11 (Rebecca also writes some nice things about me in her editorial on an earlier page, but don't look there).
I was rapt when I saw what was written but was a little bothered in that I am being made out to be special when I'm not, but Pam really is. In spite of the attention given to me, read between the lines - it's Pam's story and I want it to be known to as wide an audience as I can because I reckon it can give positive hope.
(There are many postings for this blog - please check the Archive for those not displayed here.)
"Just read your article in the MS magazine InTouch – fantastic. Congratulations to you and Pam both, mate!"
I thought, whacko that's great, now when do I get my copy of InTouch? Ah, but I'm a sticky-nose and wondered if it was Googleable - after all, what isn't these days? Sure enough I found it - it's clickable here and the story is on page 11 (Rebecca also writes some nice things about me in her editorial on an earlier page, but don't look there).
I was rapt when I saw what was written but was a little bothered in that I am being made out to be special when I'm not, but Pam really is. In spite of the attention given to me, read between the lines - it's Pam's story and I want it to be known to as wide an audience as I can because I reckon it can give positive hope.
(There are many postings for this blog - please check the Archive for those not displayed here.)
Tuesday, October 19, 2010
Radio Star Pammy
Yesterday, October 19th (ignore the above date - that's USA time), Jenni Henderson from our local ABC radio station rang me and asked if Pam & I could come in this morning (Wednesday 20th) and be interviewed by Louise Ray in connection with this blog. Well, someone else reads this by the looks...
I expected a blank rejection from Pam but when I mentioned it to her, I got just the opposite. The only sadness on her face was when I mentioned how early we'd have to get up - 6am for me. But get up then I did, and had Pam up and in her lounge chair and being stomach-tube fed by 7:10. We made moves to go at 7:45, so I disconnected the feeding tube with half of this morning's breakfast still to be pumped and proceded to load Pam into the car. Louise had wanted us in the studio by 8:15 and I understood that she was to discuss what the interview was going to contain in some detail, however I'm glad it didn't happen that way; Louise told us just enough. In this way the answers Pam and I gave were more spontaneous and I wouldn't mind betting that Louise had this in mind from the outset. In the meantime, Jenni flicked a switch so that Pam and I could hear the radio while we waited to go on.
Just before 8:50 we were ushered into the studio by Jenni and what an experience with Louise that was. Pam had no fear and plenty to say in her quiet yet audible voice. I was going on about the support we get from Trio et al when Louise wound up the conversation just in time for the 9:00 news. The ABC blog for this is ckickable here.
Jenni came back into the studio as we prepared to leave and waved a camera at us; so Louise, Pam and I gave a cheesy grin and this is what happened...
I expected a blank rejection from Pam but when I mentioned it to her, I got just the opposite. The only sadness on her face was when I mentioned how early we'd have to get up - 6am for me. But get up then I did, and had Pam up and in her lounge chair and being stomach-tube fed by 7:10. We made moves to go at 7:45, so I disconnected the feeding tube with half of this morning's breakfast still to be pumped and proceded to load Pam into the car. Louise had wanted us in the studio by 8:15 and I understood that she was to discuss what the interview was going to contain in some detail, however I'm glad it didn't happen that way; Louise told us just enough. In this way the answers Pam and I gave were more spontaneous and I wouldn't mind betting that Louise had this in mind from the outset. In the meantime, Jenni flicked a switch so that Pam and I could hear the radio while we waited to go on.
Just before 8:50 we were ushered into the studio by Jenni and what an experience with Louise that was. Pam had no fear and plenty to say in her quiet yet audible voice. I was going on about the support we get from Trio et al when Louise wound up the conversation just in time for the 9:00 news. The ABC blog for this is ckickable here.
Jenni came back into the studio as we prepared to leave and waved a camera at us; so Louise, Pam and I gave a cheesy grin and this is what happened...
Jenni graciously allowed me to use this ABC photo in Pam's blog. It's a pity she's not in the photo also.
(There are many postings for this blog - please check the Archive for those not displayed here.)
Sunday, October 17, 2010
Some tiny factual additions
Pam's weight continues to rise albeit very slowly thanks to the stomach PEG. At this time of writing she is now 50kg. Sadly, my fish scales have been deemed too unsafe to continue to use for weighing Pam, and I must stop that practise forthwith. This is a sad thing, as I can be very careful given this doubt – nevertheless the formal consequences however can be expensive and I don’t want to come across as a bloody bush mechanic.
Complications come and go, the latest being the frustration of expensive suprapubic catheters, which used to last seven weeks, have lately had me changing Pam's every two or three days. They kept blocking with a crystalline substance that Dr. Meyer and I thought was uric acid - indeed, earlier tests indicated a presence thereof. I used to suffer from gout, which is just that - uric acid crystallising in the joints. I soon learned, way back then in the mid 90's, that Allopurinol tablets would sort that out - and so it was that Pam too began such a course.
The crystallising was soon rectified, but that was still in the days when catheters would still last for many weeks; this new case however was similar, but radically different symptomatically. A subsequent urine test showed absolutely ZERO uric acid (so at least the Allopurinol was working) but Pam had developed instead, a nasty bladder infection which was causing the rapid catheter blocking which was looking very similar to the uric acid crystals to my untrained eye.
Pam is now on an antibiotic to tackle this bug, and I am so hoping that it works. Changing a suprapubic catheter every two or three days is cruel. I have to be heartless as I withdraw the old catheter - in spite of the obvious discomfort Pam endures, as it exits the virtual open wound in her lower abdomen - to hesitate would hurt her more. Then, of course I have to quickly insert the new catheter, wiggling it into a relutant and sore abdominal opening before it closes and sticks shut. Stoically, Pam all too regularly endures this with hardly a murmur and yet it'd have to hurt like Hell. Anyway, now we know what's going on, those catheter change frequencies may quickly subside, and not before time either.
Now a change of topic...
It has occurred to me that many who read this haven’t a clue about me or as to what I look like. Until now this has not been an issue, but several readers have kindly asked for at least a look.
OK, about me – (most of this is already in the story so far) – I've been involved in brass bands since I was 13 (1962) but I graduated as a Mechanical Engineer in 1969, a year and a half after I had met Pam. After 4 years of that (having married Pam in 1970) I became a maths/science teacher at Irymple Technical School and 6 years later did a 17 year stint at Sunraysia College of TAFE (as it was then called) teaching mathematics, physics and computer science, among other things.
As you perhaps already know, Pam was diagnosed with MS in 1986 and at the end of 1996 I ‘took a package’ to care for her. I have been her carer ever since – as well as being her loving husband.
All that's left now for you is a picture or two - and that'll be all you need to know about me.
This first one is a family shot when Pam turned 60 (in September 2009), the other standing ones are daughters Sharon and Jeni...
But I wasn't always this ugly - here's an earlier version of me (I'm the one on the left) and a younger Sharon chuckling in the background...
Here's another that I only just became aware of today (15 March 2011). It was taken at a dress-up function in the Mildura Distict Brass Band's bandroom about 33 years earlier.
Left to right in the foreground is Pam dancing with little Sharon (and littler Jeni watching everything from behind Sharon), then with her back to the camera is the tuba player Graham's daughter Lisa Leutner being thrilled to be dancing withElvis um er... me, Eric.
There're bound to be even better ones still, but I don't know where to look.
(There are many postings for this blog - please check the Archive for those not displayed here.)
Complications come and go, the latest being the frustration of expensive suprapubic catheters, which used to last seven weeks, have lately had me changing Pam's every two or three days. They kept blocking with a crystalline substance that Dr. Meyer and I thought was uric acid - indeed, earlier tests indicated a presence thereof. I used to suffer from gout, which is just that - uric acid crystallising in the joints. I soon learned, way back then in the mid 90's, that Allopurinol tablets would sort that out - and so it was that Pam too began such a course.
The crystallising was soon rectified, but that was still in the days when catheters would still last for many weeks; this new case however was similar, but radically different symptomatically. A subsequent urine test showed absolutely ZERO uric acid (so at least the Allopurinol was working) but Pam had developed instead, a nasty bladder infection which was causing the rapid catheter blocking which was looking very similar to the uric acid crystals to my untrained eye.
Pam is now on an antibiotic to tackle this bug, and I am so hoping that it works. Changing a suprapubic catheter every two or three days is cruel. I have to be heartless as I withdraw the old catheter - in spite of the obvious discomfort Pam endures, as it exits the virtual open wound in her lower abdomen - to hesitate would hurt her more. Then, of course I have to quickly insert the new catheter, wiggling it into a relutant and sore abdominal opening before it closes and sticks shut. Stoically, Pam all too regularly endures this with hardly a murmur and yet it'd have to hurt like Hell. Anyway, now we know what's going on, those catheter change frequencies may quickly subside, and not before time either.
Now a change of topic...
It has occurred to me that many who read this haven’t a clue about me or as to what I look like. Until now this has not been an issue, but several readers have kindly asked for at least a look.
OK, about me – (most of this is already in the story so far) – I've been involved in brass bands since I was 13 (1962) but I graduated as a Mechanical Engineer in 1969, a year and a half after I had met Pam. After 4 years of that (having married Pam in 1970) I became a maths/science teacher at Irymple Technical School and 6 years later did a 17 year stint at Sunraysia College of TAFE (as it was then called) teaching mathematics, physics and computer science, among other things.
As you perhaps already know, Pam was diagnosed with MS in 1986 and at the end of 1996 I ‘took a package’ to care for her. I have been her carer ever since – as well as being her loving husband.
All that's left now for you is a picture or two - and that'll be all you need to know about me.
This first one is a family shot when Pam turned 60 (in September 2009), the other standing ones are daughters Sharon and Jeni...
But I wasn't always this ugly - here's an earlier version of me (I'm the one on the left) and a younger Sharon chuckling in the background...
Here's another that I only just became aware of today (15 March 2011). It was taken at a dress-up function in the Mildura Distict Brass Band's bandroom about 33 years earlier.
Left to right in the foreground is Pam dancing with little Sharon (and littler Jeni watching everything from behind Sharon), then with her back to the camera is the tuba player Graham's daughter Lisa Leutner being thrilled to be dancing with
There're bound to be even better ones still, but I don't know where to look.
(There are many postings for this blog - please check the Archive for those not displayed here.)
Friday, September 17, 2010
Losing Weight
Mentioned briefly toward the bottom of the first post (below), Pam's loss of wieght is further detailed here.
Because of the effects of the stroke, Pam had subsequent difficulty in chewing and swallowing. As a consequence her foods were liquefied and supplemented with Sustagen made into a milkshake with Bulla icecream and ‘enriched’ milk (milk with added dissolved powdered milk) and was drank from her “Sippy-cup”. I’m being perhaps too brief here – the enriched milk was an evolution adapted because of Pam’s apparent frailty, she was getting very skinny.
Notwithstanding the enriched milk, Pam appeared to be continually losing weight and when I finally had her weighed (weighing Pam is not easy) she was just 37kg. I panicked and quickly set about arranging for Pam to be fitted with a stomach PEG (Percutaneous Endoscopic Gastrostomy). Pam had resisted this idea for many months, if not years, as she regarded the procedure as being one step closer to death. I would counter by pointing out that every new day falls into this category and does so for everyone – it’s no big deal. Anyway, Pam was as alarmed as I, about her apparent malnutrition and she at least agreed to “think about it”.
Youngest daughter Jeni was very much in defence of Pam’s right to accept or deny the procedure and so I took her along with me to hear what our GP, Dr Robert Meyer would say about it. He didn’t mince his words; he pointed out to both of us that the PEG would quickly bring about weight-recovery, would enhance Pam’s quality of life – through, if nothing else, not having to be continually battling to take food orally, and would very likely extend her lifetime to boot. Jeni soaked this up like a sponge and was suddenly as keen as I to have it happen.
Upon our return home, Pam was somewhat overwhelmed by Jeni’s and my enthusiasm – and the good Doctor as well, evidently. (In case you’re wondering why Pam didn’t come to the doctor’s with Jeni and I, it’s simply because of her reluctance get into the car unless she really has to. These days she can no longer roll over in bed and so is either always on her back whilst in bed in bed, or on her backside in her lounge chair and as a result, she has a pressure sensitivity at the base of her spine and it hurts to sit in her wheelchair in the car.) And so it was, that Pam agreed to have the PEG and before she knew what was happening, she was in our Surgeon, Mr Kevin Chambers' rooms booking in the procedure for 16/06/2010
Pictured is Jeni beside a recovering Pammy, her having just been PEGged.
Naturally, Pam's weight was suddenly of particular interest to me, but up until that point weighing her required something that could weigh her sitting in her electric wheelchair and that was a hospital device. I put on my thinking cap and remembered what we used to weigh stuff in secondary school: Spring balances. The ones I recalled were relatively tiny, but if I could get a pair of 50kg ones, my problem would be solved. I would simply hang these off the two lifting hooks of Pam's lifting machine and attach the sling with Pam already therein. I figured 50kg ones would be ideal given that hopefully, Pam would soon be up to 50kg in weight and spring balances are alleged to be more accurate in mid-scale deflection.
And so it was done - from "Got One" fishing supplies, I purchased two 50kg (full scale deflection) spring balances for just $15 the pair...
Each Saturday morning when I use the lifting frame to lower Pam into her shower-chair for her weekly hair wash and shower, I simply attach the balances and raise her once more (there being just enough lift height available, allowing for the length of the balances and spring extension). bounce her a couple of times to settle the springs, and then take and add the readings. On Saturday 18th September 2010, Pam weighed 48kg - somewhat better than prior to the stomach PEG, don't you think?
(There are many postings for this blog - please check the Archive for those not displayed here.)
Because of the effects of the stroke, Pam had subsequent difficulty in chewing and swallowing. As a consequence her foods were liquefied and supplemented with Sustagen made into a milkshake with Bulla icecream and ‘enriched’ milk (milk with added dissolved powdered milk) and was drank from her “Sippy-cup”. I’m being perhaps too brief here – the enriched milk was an evolution adapted because of Pam’s apparent frailty, she was getting very skinny.
Notwithstanding the enriched milk, Pam appeared to be continually losing weight and when I finally had her weighed (weighing Pam is not easy) she was just 37kg. I panicked and quickly set about arranging for Pam to be fitted with a stomach PEG (Percutaneous Endoscopic Gastrostomy). Pam had resisted this idea for many months, if not years, as she regarded the procedure as being one step closer to death. I would counter by pointing out that every new day falls into this category and does so for everyone – it’s no big deal. Anyway, Pam was as alarmed as I, about her apparent malnutrition and she at least agreed to “think about it”.
Youngest daughter Jeni was very much in defence of Pam’s right to accept or deny the procedure and so I took her along with me to hear what our GP, Dr Robert Meyer would say about it. He didn’t mince his words; he pointed out to both of us that the PEG would quickly bring about weight-recovery, would enhance Pam’s quality of life – through, if nothing else, not having to be continually battling to take food orally, and would very likely extend her lifetime to boot. Jeni soaked this up like a sponge and was suddenly as keen as I to have it happen.
Upon our return home, Pam was somewhat overwhelmed by Jeni’s and my enthusiasm – and the good Doctor as well, evidently. (In case you’re wondering why Pam didn’t come to the doctor’s with Jeni and I, it’s simply because of her reluctance get into the car unless she really has to. These days she can no longer roll over in bed and so is either always on her back whilst in bed in bed, or on her backside in her lounge chair and as a result, she has a pressure sensitivity at the base of her spine and it hurts to sit in her wheelchair in the car.) And so it was, that Pam agreed to have the PEG and before she knew what was happening, she was in our Surgeon, Mr Kevin Chambers' rooms booking in the procedure for 16/06/2010
Pictured is Jeni beside a recovering Pammy, her having just been PEGged.
Naturally, Pam's weight was suddenly of particular interest to me, but up until that point weighing her required something that could weigh her sitting in her electric wheelchair and that was a hospital device. I put on my thinking cap and remembered what we used to weigh stuff in secondary school: Spring balances. The ones I recalled were relatively tiny, but if I could get a pair of 50kg ones, my problem would be solved. I would simply hang these off the two lifting hooks of Pam's lifting machine and attach the sling with Pam already therein. I figured 50kg ones would be ideal given that hopefully, Pam would soon be up to 50kg in weight and spring balances are alleged to be more accurate in mid-scale deflection.
And so it was done - from "Got One" fishing supplies, I purchased two 50kg (full scale deflection) spring balances for just $15 the pair...
Each Saturday morning when I use the lifting frame to lower Pam into her shower-chair for her weekly hair wash and shower, I simply attach the balances and raise her once more (there being just enough lift height available, allowing for the length of the balances and spring extension). bounce her a couple of times to settle the springs, and then take and add the readings. On Saturday 18th September 2010, Pam weighed 48kg - somewhat better than prior to the stomach PEG, don't you think?
(There are many postings for this blog - please check the Archive for those not displayed here.)
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