Thursday 17 July 2008

We have had a busy few days since the last update.

Yesterday Dr Pacl visited as did our GP, along with the plumber (leaking taps finally had to be dealt with) and the electrician (we need more power points in the bedroom as Peter's equipment, along with the heater, electric blanket, side lamp and TV etc are creating a real OH&S issue for both of us with too many extension cords, power boards and so on creating a trip hazard, not to mention my concern about possible power overloads).

Anyway, taps are dealt with, power points will happen next week and also the painter/plasterer who is coming in to patch up the large cracks opening up in the house due to the drought and our gradual descent down the hill to the end of the cul-de-sac.

Dr Pacl spent considerable time with Peter yesterday and as he hasn't seen him since 19 June, when Peter was only on small amounts of liquid food supplement, he declared that he looked better than the last visit which he felt was as a result of the full amount of nutrition he has been able to take for the past 9 days. I also thanked him for the help in providing the oxygen concentrator and the home nebuliser as that has made a huge difference to Peter's level of comfort both physically and psychologically. Dr Pacl would like to remove the syringe driver but Peter is resistant as it has been the only medication that has really helped him to remove the pain in the past year or so. A compromise has been reached that we will move off the syringe driver over the next few weeks so that Peter has time to process that change and Dr Pacl would like to re-institute the skin patches. Peter's resistance to them is that they didn't work for him and Dr Pacl reassured him that the doses he was on were too low and now we know what works (ie. the hydromorphone) he can work out an equivalent patch dosage that should be effective as well as easier to apply. It would mean we wouldn't need the nurses to visit on a daily basis. But I think Peter feels a sense of comfort that they do come each day to help deal with the daily issues.

For example yesterday the peg feed tube blocked when I was giving the last of the morning medications. Usually if that happens I leave it for 1/2 hour and then give it another attempt. However, after 4 hours I couldn't unblock it. With the help of Joan in the Pall care team, I tried Coca Cola (which apparently is a whizz for unblocking all types of gastric tubes) but I couldn't get any of it in for it to do its work and trying to suck the blockage out didn't work. Anyway, after further consultation with some community nurse specialist and further instructions, Inge (Pall care nurse) was able to unscrew various parts of the tube and clear the blockage with a smaller sized syringe and bicarbonate of soda and water. So now it works smoothly but it was a worrying few hours as we would have had to go to the Emergency department of Canberra Hospital and possibly have had the tube removed and a new one replaced. This was something I definitely did not want to have to do unless totally necessary as I knew that it would not only exhaust and trumatise Peter but he would then not trust me to administer the medications again for fear of what might happen. So finally after the 4 hours all was well and the afternoon and night feeds have gone well.

Anyway, Dr Pacl also talked through some of Peter's fears that have been concerning him. One of which is about suffocating. Dr Pacl discussed with him why his situation is different, medically, to that of Peter's father and how he wouldn't have the same situation occur because his condition is different and things would manifest themselves differently. I thought he did it with great care and openness and that it gave Peter some food for thought as well, perhaps, as some comfort that the fear of suffocating may be only a fear and not the future.

Other news is that there is currently no infection at the Peg tube site, syringe driver is working well, Pic line is clean and okay and I think we have the bowel and bottom side of things under control. My cunning plan for the spenko (wool filled over-mattress) has worked and since Sunday afternoon I have had Peter using it and it is more comfortable. I have laid a big beach towel over it to act as insulation and absorption and a nice fluffy cotton flannelette sheet over the top. So I am using a combination of different sorts of blanket (cotton, mohair or wool quilt) and hot water bottles to get the temperature under control and it seems we have minimised the sweating as a result.

This morning Peter has announced that he will try to put on clothes (rather than pyjamas) and see if he can get up for a little while. This is as a result of Dr Pacl's positive intervention yesterday I think. We need to bottle this doctor as he is a rare and excellent person.

Peter also had 2 visits this week - one from a friend who came over from Perth. Unfortunately Peter was only able to spend about 10 minutes and a further 5 minutes with Stephen. But I know he was touched that he would come all this way to spend some time with Peter. Also a lovely visit from 2 other friends on Sunday afternoon. It may have done me more good than Peter to see both sets of people, but I think there were positive signs for Peter as well. So I am hopeful of introducing some other people back into seeing Peter (those without infections or illness of course as his bloods are still quite low after the chemotherapy etc) over the next week or so, even if only for 10 minutes or so.

Anyway, that's all for now. I will write when I have more news. Cheers - Leanne