Wednesday, August 17, 2011

Delight followed by Dismay

In a strange way, this story is reminiscent of a previous posting in which a good thing is followed by a hospitalisation. The ‘good thing’ this time however was the safe arrival of granddaughter #3, this time to youngest daughter Jeni and her husband George. Poor Jeni, now in her mid-thirties has been clucky for well over a decade and little baby Ellie, born 5:45am on Monday 8th August is not only Jeni’s absolute delight, but her MS-suffering mother’s as well.

Pam rarely asks to be driven anywhere in her wheelchair-friendly car, but for Ellie it was every day that was suitable for the visited ones. I was over the moon with Pam’s enthusiasm (and I am a keen Gramps as well – I might add) and so it was; lots of trips to see baby Ellie in hospital maternity and of course, when she at last came home to Jeni & George.

On Saturday afternoon, when Ellie was just 5 days old, these pics were taken of Pam and her. Pam was in her element!

My darling stroke-afflicted wife finds it difficult to talk and so finds it hard to express emotion, but you’d have to be Blind Freddy not to see how happy Pam was as I drove her home and put her to bed. She even slept with a smile of contentment. It was so beautiful.

That night while Pam slept, we think she aspirated a stomach regurgitation and when she woke up on Sunday morning, she was struggling with a gurgly cough. Nevertheless, she trivialised the symptoms enough to make me happy enough to, at 10:30am, be replaced by TRIO Support carer Therese, to allow me to go to the bandroom for the weekly social gathering, euphemistically known as “Morning Prayers”, but is anything but, in reality.

I returned at 12:52pm to resume my caring role only to find Pam horribly crook – barely able to talk and seemingly battling a losing battle with a horrible rattly, gurgly cough. In spite of her protests, I rang the Mildura Base Hospital (MBH) for advice and was recommended by them to ring 000 and get an ambulance to check her out. Therese finished her duty at 1pm and the ambulance arrived within minutes thereafter.

Apparently, all the time that Therese was there, Pam insisted to her that she was alright – and so I wasn’t notified. The Paramedics found congestion in Pam’s right lung and she was taken to the Emergency Dept at MBH.

An X-ray determined that Pam had aspiration pneumonia in her right lung and so there she stayed – for 26 hours (!) – in the Emergency Dept because there were no available beds anywhere in the hopelessly under-designed and under-funded MBH. Don’t get me wrong, all the staff persons there are wonderful; but are working in a seemingly seriously chaotic, congested place.

When I got back there on Monday morning, I was upset to see Pam still there in Emergency – at least they’d found a air-mattress bed for her, rather than the trolley. I told one of the doctors there that we had registered Pam as being a private patient and so I asked him if she could be taken to Mildura Private Hospital (MPH), seeing there were no available ward-beds for her at MBH. I was told by him that MPH would probably not take Pam on, because of her pneumonia. I was far from convinced.

So I went to MPH and told them of those doubts and was immediately assured that Pam would be thoroughly welcome – they had had her there many times before and all I needed to do was to find a doctor to care for her during her stay. They suggested our GP, Dr Bob. It turned out, the doctor who was charged with Pam’s care whilst she was in Emergency, Dr Soward (my Cardiologist btw), kindly agreed to continue monitoring Pam’s care in MPH, so whacko, it looked like Pam was about to be shifted. All we needed was an ambulance to take her there.

Getting an ambulance was easier said than done. There were several of them sitting outside, with the Paramedics ‘hanging around’ inside, but they were all required to be there until OK’d by Ambulance Control (in Bendigo) to do anything else. And so I sat with Pam in that noisy space for one or two hours until an ambulance was available. I had even offered to drive Pam over myself – I did have her wheelchair still in the car. Ah, but NO – it’s against hospital protocol.

I got sick of sitting, so I decided to take Pam's gear (PEG food, colostomy stuff, clothes, flowers etc) over to MPH, which I did and whilst I was there, I got a mobile call from Emergency staff that the ambulance was about to take Pam across. I walked to the corner of 13th St and Ontario Ave and eagerly watched and waited. When I eventually saw the ambulance coming, I quickly walked back to MPH expecting the ambulance to pull up at the front to where I was heading - alas they drove around the back "to the servant's quarters" as explained by one of the ambos, but nevertheless I got to Pam's room just as she did, with both ambos helping, her on the trolley of course. She beamed as best she could and so did I.

At about 3:30pm Pam was settled in that High-Dependency room, a 3-bed room but with Pam being the only occupant. It was such a contrast to where she had just come from. At last Pam could rest peacefully – and she did SO deserve that.

That was Monday 15th and here it is Thursday 18th as I write all this (as usual, ignore the American time-stamp at the top of this post). Pam is gradually getting better and I expect in a couple of days they’ll be talking of sending her home. I took this picture of Pam just before I came home to type this post. She is, of course, asleep - but she woke up soon enough.

But this is a worrying development of Pam’s MS. Now, apparently, she spontaneously develops aspiration pneumonia in her sleep! How am I going to sleep when she comes home???

Here I am, Monday 22nd August. It seems now that an answer to the above question might be a while away, or perhaps never be answered. At the Private Hospital, Pam got stronger by the day and by Thursday, she was as well as she's been for a long time and very talkative and very excited about the new grandchild - but by Friday, she had aspirated again, in her sleep, and was very gurgly with her breathing. Antibiotic was administered by IV and Pam was holding steady until mid-afternoon yesterday. I got a phonecall from Chris, a MPH nurse we have known for years, and she told me that Pam had got worse and they were sending her to ICU at the Base Hospital.

I arrived at the same time as did the ambulance. I loaded Pam's PEG food, clothes and flowers into my car and her medicines went with Pam on her trolley. Once again it was a long wait at the ambulance end of Emergency Department until Pam was allocated to cubicle #3 in ED (ICU was completely full of patients - and why was I not surprised?) This morning I found Pam in a ward bed - the Paediatric Ward (!) One cannot blame the staff for not trying in a situation rapidly becoming hopeless. Physician, Dr Terry Cook was assigned to Pam's care (we have known him since a social occasion back in 1974). Dr Cook didn't look too happy re Pam's prognosis - he said Pam probably aspirated some saliva last Thursday night, which brought her here.

Perhaps Dr Cook can figure out some way to stop Pam aspirating in her sleep - and I like to be optimistic about it. But alas, I feel an ominous foreboding instead; and I'm scared.

It's now Friday 2nd September, 9am and Pam is still in the same room. She has been having quite a lot of trouble with her lungs - and still is. At long last, she is off the antibiotics as her lungs have apparently cleared of the pneumonia, but something is still very wrong because Pam now requires a considerable blast of hydrated oxygen up her nostrils to keep her blood oxygen reasonable. Attempts to wean her off this oxygen have simply caused her blood oxygen to become worryingly low again as a consequence.

A scan was made of Pam's PEG feed. Radioactive dye was added to 50ml of PEG food and injected into her stomach via the PEG tube. Almost immediately the J-shape of the stomach was visible on the monitor, but very soon afterwards a thin line growing vertically upwards indicated that Pam was refluxing the food into her oesophagus and it would have eventually got up to her mouth level and possibly once again aspirating into her lung(s) if Pam hadn't complained about her left arm being squashed against the bed rail. The scan was stopped and the bed adjusted so Pam longer had a squashed arm and that she was sat more upright - hoping for a gravity-assist. The Radiographer was happy though; there was enough evidence to allow the doctors to do a proper diagnosis, he thought - and there was too.

There was still the worry that Pam still had the potential to aspirate on her own saliva (ie aspiration from the other end) and from what I can gather, neither of these faults are directly treatable, but the nasty aspiration symptom possibly is. Pam is normally fed by a gravity drip feed (and NOT by a 50ml food slug given all at once, as it was for this test) and this feed takes a good 40 minutes to deliver the 230ml feed, so by using a medicine to encourage the stomach to quickly expel its contents to the duodenum ASAP, it lessens the risk of oesophageal reflux. How's that for thinking outside the square?!

Pam uses a device to test her inhaling function. the hand-piece contains three plastic balls coloured red, orange and black and an attached breathing tube and mouthpiece - the idea being, a gentle inhale will lift the red ball, a slightly stronger inhaling will also lift the orange ball and a strong 'suck' will lift the black ball as well. When I first saw this thing, I used my first finger and thumb to keep my lips off the mouthpiece and gave it a quick suck. Bang, bang, bang - all three balls up to and hitting the tops of their respective tubes in nothing flat. (But I cheat - I play in a brass band.) Next day I watched the physiotherapist give that device to Pam to try. Poor Pam couldn't raise any of the balls when she sucked.

So it is - I have twice now been encouraged by being told "Pam can probably go home on such-and-such day", but when that day comes, Pam's lung strength (or lack of it) keeps her right where she is. I was supposed to bring her home tomorrow, for example, but yesterday that also was nobbled.