Not too much time had elapsed before Pam started coughing, or at least attempting to. (She cannot cough effectively and this is what caused her pneumonia back in 2009, which very nearly killed her.) With this in mind, it didn't take much longer before I, in spite of Pam's chagrin, got out of bed and phoned for an ambulance. Whilst they were coming, I dressed and readied myself to welcome them. The two ambulance ladies very soon decided that Pam was to go to hospital in spite of her objections. I followed by car.
Pam was kept on a trolley (a comfortable trolley) from 2:15am until a ward bed became available at about 3pm on Wednesday. She was diagnosed with pneumonia of the left lung and fluid around the right lung. Not good news at all.
As I write this, it's Thursday 11th June approx. 4:15pm. Pam is on antibiotics, anti-nausea meds and laxative treatment for constipation allegedly brought on by the codeine in the many Panadine Fortes she's recently been having to combat muscular headaches over the past few days. After a full day's worth of antibiotics, this is how my darling appears...
She has several more days in hospital and she wants to come home once more - I want her back too, but we both know where she's better-off for the time being!
Now that I have had time to think more clearly, I think it reasonable to give you an understanding of what's involved in having Pam hospitalised...
- Because Pam is fed overnight with a feed-pump, I had to bring to the ward her Kangaroo-Joey (K-J) pump, its stand and power cord; plug it in and set it up. The K-J bags/feed tubes and PEJ food that goes into the bags also had to be brought in. (It used to be called PEG food, but I have just learnt that in Pam's case, with the feed entering her jejunum instead of her stomach, it's now called a PEJ feed.)
- Bring in Pam's jellybean switch as she cannot operate the hospital's alarm bed-switch. Fortunately, Pam has been here before and they remember her - and so they put her in a bed where the TV controller/alarm device had previously been fitted with a socket for Pam's jellybean switch connection plug. This jellybean button can be seen in the above picture for Pam to actuate with her chin.
- The hospital pillow was too firm for Pam, so she is seen in the above picture to be resting on her home bed pillow.
- The hospital staff need congratulating for remembering Pam and also being aware as to her current needs. They quickly found for her an alternating pressure mattress almost identical to that which we have at home.
We were given the option of having Pam admitted as either a Public or Private patient. We chose the former. So far the only expense has been the rental TV. I booked it for a week at the pensioner rate of $47. If you knew Pam, you'd be as happy as me at paying double if it was asked.
Well here it is, Friday 12th June, 4pm. I've been going to the hospital for each of Pam's 9am, 11am, 1pm, 3pm, 5pm, 7pm and 8pm hydration flushes, 4 of which are medicated as well as charging the feed packs with PEJ food and priming the pump each time in readiness for the 8:30pm feed start (which the hospital staff do, 'cos I've gone home by then). Hospital policy is not to use Webster packs at all - and all of Pam's regular meds are in a Webster pack. The deal is, I can use the Webster pack and the staff appreciate that because it's a job they won't have to do - and if I didn't do it, the staff would have to requisition the meds from the pharmacy. It was by mutual agreement that I was to do it, but in order for the staff not mandatorily locking the Webster pack away in between medicated flushes - I was to instead take it home each time.
Pam looks like staying in hospital for the weekend but, depending on how she goes, she may be allowed home early next week. Time will tell...
OK, so here it is 1pm Tuesday, June 16th and indeed time DID tell. All was looking reasonably good until Sunday night, when I was told that Pam's left lung had collapsed (because of pneumonia) and her right lung was surrounded by fluid. Pam was feeling hot even though her body temperature was normal. Nevertheless, she was happy.
On Monday, however, she was complaining extensively about feeling hot (and sweaty) and she was gasping for breath. The hospital staff were alarmed by her low blood oxygen saturation, and in addition, she had produced a urine specimen upon admission on the 10th which indicated a bladder e-coli infection which required her to be moved to a private room - because of its resistance to antibiotics. The private room was an unexpected plus, but I have a feeling we haven't heard the last of the e-coli.
By Monday evening Pam was so unwell in trying to breathe that the doctor asked me how much life-preservation did I want the hospital to provide. That was a death warning as I took it. Pam and I both said that ICU would only be considered appropriate as long as whatever process it invoked would HELP her to recover - otherwise NO. The ward had access to a BiPAP machine, which is essentially a pressure pump and that was applied to Pammy. In addition, she was medicated to affect the fluid on her lung, and while I was there, soon after produced 150ml of clear water-like urine as a consequence.
The BiPAP machine was to inflate her collapsed lung - an hour later, it was removed to see if Pam could keep up her oxygen. This she managed for an hour and so went home.
This morning, I went to that private room, to find it vacant and all Pam's belongings gone. A nurse noticed my angst and asked if I had been telephoned last night to explain that Pam had been moved to ICU. Well, no-one had and I found that annoying, but I went to the ICU at 8:15 this morning and found Pam once again on a BiPAP machine. ICU can better manage Pam's 'obs' and evidently that's the only reason she was sent there. Apparently her blood oxygen had relapsed after I had gone home and Pam had been transferred to ICU at 10pm last night. They let me stay with Pam for just a few minutes because visiting hours in ICU start at 11am.
I went back at 10:55am and was allowed in. Apparently, the BiPAP machine was doing its job in reinflating Pam's left lung and Pam was looking happy, if not 100% healthy yet.
I received SMSs from Sharon and Jeni (our two daughters) telling me that they were coming to see their Mum. Sharon from Adelaide, Jeni (and her two children, little Ellie and baby Teo) from Melbourne. They arrived mid afternoon with Jeni arriving first - and very pleased was she, to see her Mum. Sharon arrived an hour later and eventually we decided that when we left, I'd bring some fish and chips around to their motel and we'd get into it. I later remembered that as it was Tuesday night, I was due to go to band pracky at 7:30. I rang the musical director and told him that I might be late. I actually arrived just 5 minutes late. The ICU has strange visiting hours - even though they'll probably let you in anytime, they prefer 11am to 1:30pm then 3:30pm until 8pm. Apparently these hours are not too different to the rest of the hospital, but theirs start at 9am and are definitely not enforced.
It's now Wednesday 17th and after visiting Pam, I had lunch with the girls and the kids (Jeni's) at the Working Man's Club and we agreed to meet again later with Pam and get a family photo. The girls had also seen Pam after I had this morning and reported how unwell she looked. I'll be in the waiting room before 3:30pm to find out how she is. I am ever the optimist, but news like this doesn't wash well until I've verified it. Anyway, here's the photo of all those mentioned, including me (Jeni's closest to the camera)...
At 9am tomorrow, I have an appointment with one of the ICU doctors who will explain exactly what the ICU is doing with Pam and what is hoped as to be the outcome. Pam and I have both agreed that life-preserving with no inherent improvement of health is, for us, not an option. So I'll get back to you when the outcome is known.
Thursday 18th. Sharon and I turned up (independently) to the ICU waiting room at 8:25am. We had to wait 15 minutes to get in and when we got to Pam, we were simply amazed. Yesterday was a bad day for her, she was off the BiPAP machine for just 15 minutes in the 24hrs. But this morning, when we got there she had been off it already for nearly an hour and her stats were good, and this is how we were received...
Pam totally surprised me, and that's not the first time since 2009 BTW. The Dr said she's not completely 'out of the woods' by any means, but the signs look very good.
I really LOVE my missus!
Here it is now Sunday 21st June. I got up as normal, and soon after 9am went to see Pam (who had been happy and well thanks to the treatment in ICU), but when I got through the door from the waiting room into ICU a nurse mentioned I should go back to the waiting room as there were a lot of doctors currently with Pam. I asked if was OK to wait outside her room door, but she said it'd be better if I went back to the waiting room - so I did.
Soon after I had settled there, having turned on the TV to enjoy while I waited, all five or six doctors who had been with Pam came into the waiting room to talk to me. I switched off the TV and the head doctor, Dr Mani, explained 99% of what needed to be explained, and I thank him for the kindness he showed me. Pam had had a terrible previous night struggling to breathe even though she was on the BiPAP machine all night. Dr Mani explained that in spite of the medications to rid Pam of the fluid in and around her lower lungs, it was nevertheless still there. Pam's Oxygen saturation was in the mid 80's percent (way too low), her heart was racing at 130 beats per min (way too fast) and she was attempting to breathe at a rate of 30 breaths per minute (way too fast) and getting precious little air for her effort. He went on to say that, with Pam's MS and the failure of the pneumonia treatment for her, they could only now do their best to keep Pam comfortable. No more BiPAP or mask and hence no more need to keep her in ICU. She will be (and was) given morphine to help her relax and not notice the discomfort of struggling to breathe - perhaps not even needing to struggle if indeed she was relaxed. They are trying to find a single bed room for Pam in Ward 4 (a rehabilitation and palliative ward) and would likely be placing her on an intravenous morphine treatment there - until she died. (I don't like the term 'passing away' because that implies an active step one allegedly does, when physical activity is not possible.)
I went to see Pam and found her on an air/oxygen nasal ventilation and yet her Oxygen figure was 97%. Apparently she had been off the BiPAP for ages too. Jeni, George and their children had left the previous night expecting none of what was to happen. Sharon, Neal and their two girls had arrived since the previous post and were still in town. It wasn't long before Sharon and youngest daughter Erika arrived, Neal and Kira arrived a little later but they were soon leaving to go back to Adelaide Pam was very tired, not having slept at all the previous night, due to her struggling to breathe, but was now strangely at piece and able to sleep. I left and returned about 90 minutes later. This is how Pam looked this afternoon (having had some morphine)...
Because the BiPAP machine had been taken away, a nurse had taken the mask tape off her nose. (There's a wound on the bridge of her nose which happened because of the mask prior to the tape being applied.) I made it clear to all and sundry that, if at all possible, Pam would like to be home during this end-stage game. Given the equipment we have here at home, perhaps Mildura Palliative Care might be able to acquire the additional equipment - the air/oxygen pump and the morphine infusion pump.
I'd like to think Pam has been like this before; and she'll come good yet again. However with the known fluid in and around her lungs, and the fact that pneumonia still had her left lung collapsed - I'm afraid I don't like my chances. It's now 4:20pm, I'll update this blog and go and see my darling.
Well, it's now Monday 22nd 9:05pm and I've just returned from seeing Pam. This morning the Community Palliative Care nurse told me that they could provide oxygen equipment and a morphine infuser for Pam, when she comes home (tomorrow) and I purchased an ice-crusher in order to orally give Pam the crushed ice, which she'd become fond of since yesterday. Of course, I also made some ice-blocks.
I had visited her four or five times today, but this time, as I was heading off to go at 6:30pm, I got a phone call on my mobile from Greg, one of the male nurses in ICU. He explained that Pam was comfortable and currently asleep and it looked to them that she might not last the night. He muttered something else, but as I was already heading there, I told him I'd see him when I got there in about 5 minutes. This I did and he explained that if I wished to stay the night they could find me something comfortable to sleep on and then I would be handy if Pam died. I replied that if Pam died, it wouldn't matter when I turned up or not, but that I would like to know that she had - and when. Then I went in to see my poor Pammy.
The room lights were on and the TV was going and Pam was laying there with her eyes closed and mouth wide open - but she was definitely breathing. She soon realised that I was there and opened her eyes and I sat beside her and held her hand.
She was having great difficulty talking, but I managed to tell if she wanted crushed ice or the washer on her head re-wetted etc. She was watching TV but was unable to tell me what she had just seen. Jeni rang from Melbourne and expressed her love for her poor, dear Mum. I kept holding her hand and telling her about the early days of our relationship - and Pam smiled.
Eventually, one of the nurses came in and asked if she could take some photos of the two of us - how thoughtful she was. Here is one of the many...
I stayed until Reno Rumble had finished because I had a feeling that Big Bang Theory might be on next - and both Pam and I HATE that with a passion. It turned out that Married At First Sight was on and Pam wanted to watch that, so I kissed her goodnight, told her that I planned to see her in the morning with the ambulance eventually taking her back home and then went home myself. The staff of ICU will ring me if necessary, but what I'll do if I'm told that Pam has died is anybody's guess. I might get back to sleep, but probably won't.
So here it is now, 9am Wednesday 24th of June. Yesterday was one of the busiest days for decades (if not my whole life). I was up at 6am, shat, showered, shaved and breakfasted by 7am and after washing the clothes and hanging them out, I was out to the hospital before 8am. I didn't know what to expect Pam-wise, but after the night before, and moderated by the realisation that no-one had rung, I was optimistic. Pam didn't let me down - she was bright as a button and excited about the prospect of going home.
The ambulance was scheduled for 10am, but Pam now wore a morphine-delivering, battery-operated syringe pump as well having oxygen being delivered into her nose. These two things needed to be considered as certainly the oxygen had to be kept in action, during and after the transport. The Palliative Care Nurse (PCN) was supposed to come before the ambulance arrived to change the morphine pump, but as it turned out, she unfortunately could not; so Pam was given an injection of morphine into the subcutaneous bung already placed in her left leg. The ambulance men had an oxygen supply, so at 10am, or thereabouts, Pam was driven home. I drove home before the ambulance arrived and soon after a lady arrived from a company called 'Air Liquide' and put in place a large oxygen pump in readiness for Pam's impending arrival. I called TRIO Support to a: send someone to note what's going on and b: restore my Pam-care cover. Pam then arrived, so did two staff members from Trio. The PCN was still there. I had the ambulance men just take Pam into the lounge room where I used her sling and lifter to take her to the bedroom. The PCN came with a morphine pump, identical to the hospital's pump and it was quite a while before it could be put in place. The hospital had given me a prescription for the medicines to be pumped, but they had to be ordered from the pharmacy, (So far, I've only mentioned Morphine, but there is also Midazolam and Ondansetron in the mix.) So the PCN disappeared to Flannigan and Poole's Pharmacy in Lime Avenue and I took my Pam-care cover to do some shopping. When I got back, the PCN had returned and was waiting for the delivery of the pharmaceuticals - but that didn't happen until 3:45pm. While she was waiting, she prepared and labelled syringes, two with water, to be used as water flushes after additional medication of Morphine and/or Midazolam to be given if Pam is distressed for any reason.
Pam-care cover was reinstituted and so at 7:30pm, I went to band practise and enjoyed it immensely.
My darling wife was still peaceful when I got home at 10pm and I was tired and wanted to retire to bed - and so I gave the TRIO Support lady leave to go half an hour early. What a day it was.
This morning I took a picture of Pam in her bed. You might think (and be correct) that I've done this many times before, but given what's going on with Pam, I'm grateful she can be so peaceful...
This afternoon, Pam's sister Val rang up to say she and her husband Tony, would be coming up (from Melbourne) to visit Pam this coming Saturday. Pam is delighted and I can think of nothing better to give her the enthusiasm to keep hanging onto life.
To think, only two days have elapsed since the last posting because here it is now 9:10am Friday 26th June and to me, the last post seemed to have been done a decade ago. Poor Pam is fading fast - her throat is gurgly, her voice is weak and she now has difficulty with anymore than one-syllable words. She might say "Ice" and I'll get up (even if it's 1am and cold (and I'm in only my undies)) and get a few ice-blocks out of the freezer, crush them (in the new crusher I bought last Tuesday morning) and take them to her in a drinking glass together with a teaspoon to slip the ice in between her lovely lips. Once, she even said "Ta". Well I remember how she used to say "Thankyou" more frequently than nearly anyone on the planet, but this slow impending dying thing robs one of many, unexpected things. It does indeed!
As I type this, it's 4:55am Saturday 27th June. Last night, Pam had a horribly gurgly throat and/or chest and I could not encourage her to breathe in through her nose. There is an oxygen input fitted to her nose, but in her dealing with the difficulty in breathing by attempting to breathe in and out through her open mouth, I think she was receiving no benefit from that oxygen. I'm not a medico, but I reckoned that in Pammy breathing like that, the oxygen input was being occluded by her soft palate. Anyway, I got off to sleep, but was soon awakened by poor Pammy desperately trying to breathe by rapidly gurgly breathing in and immediately out with relatively long pauses between such breaths. I had earlier encouraged Pam to not only breathe in nasally with a closed mouth, but to also see if she could shift the 'pause' to immediately after she'd breathed in, not after she breathed out. But I might as well have been talking to myself.
I wondered how long Pam could keep this up, but soon became empathetic about her stress. It was a cold morning, so at 4:15, I went to the kitchen and dressed without the benefit of the three bathroom S's firstly and increased the oxygen output of the Oxygen Concentrator (now kept in the kitchen because of its 40 decibel noisiness) from 2 litres per hour to 4. I then went to Pam and placed the ventilating nose piece in such a way that it was pointing into her mouth, not her nose. I also gave her a Midazolam injection to mitigate her agitation/anxiety distress. Having written these two paragraphs, I have just now checked on Pam and all appears well. While her chest/throat is still a little gurgly, she is breathing more normally and seems to be happily asleep.
She is looking forward to the impending arrival of her sister and brother-in-law, Val and Tony, from Melbourne - who are possibly driving up here as I type. I'll be ringing up Palliative Care Services at 8:30am to see if they've got something better than that which I'm currently using to ventilate Pam's mouth.
9:30am. The Palliative Nurse has arrived but it turns out that the gurgling, which I thought was a consequence of her lungs filling with fluid, is in fact a usual event associated with impending death and is called a 'Death Rattle'. She gave Pam hyoseiene into her sub-cut bung to help alleviate the gurgling.
Val and Tony arrived in the early afternoon - and Pam was so happy...
8:45am Monday 29th. Val and Tony again visited and left for home soon after. Therese Rhodes from TRIO Support came around at 10:30am to give me some welcome Respite Leave, which I took and returned sometime after 1pm. A PCN came at 1:25pm and Therese then left. My darling Pammy refuses to die. She is still breathing - with the shortest, shallowest of breaths, every 5 to 7 seconds. Fortunately, the gurgling has stopped and has been so for 36 hours. I don't think the hyoseiene helped at all, Pam only had one dose and it's supposed to be given 4 times a day, every day - but it wasn't needed, as it turned out.
Pammy's extreme and unfair life battle ended peacefully at 1:30pm today, Monday 29th June.