It is now 6 weeks to the day since I took Peter into the Nat Cap Private Hospital and he was admitted to the Intensive Care unit. It is also 4 weeks and 1 day since the Intensivists said it was all going to be over for Peter within a week and they withdrew the hydration and nutrition.
In that 4 week time period (since 2 August) he has made some good progress and I was thinking about some of the "gains" he has made in that time due, primarily, to food, ongoing medication (Antibiotics in the main) hydration, not to mention support and care of course:
1) Bed sores are healing
2) Sputum now has no sign of Pseudomonas bacteria
3) Peter is able to raise himself from the bed and get onto his feet without assistance
4) He is able to speak more than 1 word without taking a breath (in fact several at a time now)
5) He is now down from 14 litres of oxygen to 8 litres
6) He is sitting up in a deluxe chair with air pillows for around 6 or more hours per day
7) He is able to walk on the spot for 40 steps using a "forearm walker"
8) He looks better
9) He is engaged with me and visitors when he is feeling rested and okay.
On the opposite end of the spectrum he still has issues with the food intake and outflow - we need to get that balance right; he needs to build up strength and his capacity to take a few steps; I am unsure whether he will be able to do without the oxygen altogether anymore; I am unsure whether he would go downhill again if the antibiotics were withdrawn.
But I can say he is still as alert as ever when he has had sleep, is still a very good Scrabble adversary and his repartee has not lost its accuracy or barb. We are enjoying various movies on DVD and BBC series or dramas and he likes visitors when he is up to it.
I am okay but remain feeling tired at times. I enjoy doing things for and with Peter and being with him for the 10 - 12 hours a day but it can be "full-on".
Message for today: Enjoy the small things - the ordinariness of an independent life, breathing without assistance, independence, privacy, dignity, control over your body and the capacity to do all these things without even having to think or ask someone else's permission. Because illness and being cared for can rob you of some, if not all, of these.
Leanne
Monday, August 31, 2009
Wednesday, August 26, 2009
Not much to report
Peter had a few really good days (over the weekend) which were a lot to do with getting more sleep. However, the last couple of days he has had less sleep and is feeling more exhausted as a result. He has also developed some nausea which is proving difficult to ease and this, coupled with the need to cough up phlegm "plugs", means he has been draining energy reserves and finding it difficult to recover. I am hopeful that he might have got some more sleep last night but he says he is "scared stiff" at night and as he has only 1 functional hand, he is in difficulty often at night because he needs 3 hands to help him hold a sputum bowl, wipe his mouth and hold his oxygen mask. Unfortunately the night staff are busy and don't offer Peter the kind of support he needs so he has escalating stress at night.
I spent the early hours of Saturday morning with him after he called me at 1.40am. It was a long day - 12 hours through Friday, then 3 hours sleep and then another 11 hours, before going home on Saturday afternoon for a couple of hours sleep and returning for another 3 hours until a volunteer could arrive to be with him overnight.
Meanwhile we continue to work on his feeds with the nutritionist, who is a joy to work with; and today, if Peter is up to it, he has asked the physio if he could take some steps using the "Forearm" walker and 3 people to assist so he can do more than walk on the spot. We have to be careful as his calf muscles have shrunk away and so he needs to be supported and gradually built back up if that is at all possible.
Doctors still think this is a gradual downward path. I remain "pragmatically optimistic" about daily gains and hope I can get Peter home in some weeks.
Leanne
I spent the early hours of Saturday morning with him after he called me at 1.40am. It was a long day - 12 hours through Friday, then 3 hours sleep and then another 11 hours, before going home on Saturday afternoon for a couple of hours sleep and returning for another 3 hours until a volunteer could arrive to be with him overnight.
Meanwhile we continue to work on his feeds with the nutritionist, who is a joy to work with; and today, if Peter is up to it, he has asked the physio if he could take some steps using the "Forearm" walker and 3 people to assist so he can do more than walk on the spot. We have to be careful as his calf muscles have shrunk away and so he needs to be supported and gradually built back up if that is at all possible.
Doctors still think this is a gradual downward path. I remain "pragmatically optimistic" about daily gains and hope I can get Peter home in some weeks.
Leanne
Thursday, August 20, 2009
"Plateaued"
Peter has reached a plateau according to the specialist, Dr P., which I think means the medico's still think he is on the way out. But I have to say I think he is doing well at very small improvements every few days, but I suppose doctors are more objective and less close on a day by day basis. However, the infection in the Peg tube seems to have cleared up according to the latest swabs, the skin has healed around the Peg site and so that is one less issue with which we have to deal. And to me those small things just make life that much easier or more difficult depending on which way they are going and also make Peter more or less depressed.
Peter is also breathing more clearly and has less phlegm to bring up and he has been able to stand without assistance from the bed and do a few dozen "walking on the spot" exercises. All huge leaps of positive progress as far as I am concerned. I know this is due to the continuation of fluids, food and most crucially, the antibiotics which are holding everything (infection-wise) in check. I am hoping that they continue to do so, to allow Peter to get on top of the infection.
On the other hand, he is more anxious and distressed when I leave in the evening and has had to have some anti-anxiety medication. Sometimes I get phone calls after I have come home in the evening, which has necessitated me ringing the staff on his behalf, which I am sure is not something they are too thrilled about especially when busy.
We have not been playing too much scrabble lately as peter has been sleeping a fair bit when he has done his exercises. I have started to find his strategies also work for me and I think that Peter doesn't enjoy losing to me on rare occasions (but then I hate losing too).
Physios and Nutritionist continue to be super helpful and very positive about Peter's progress. He is tolerating the liquid food but is still having "clinical diarrhoea" which the nutritionist is now treating with Hi Maize, a starchy fibre supplement which looks like corn flour and apparently is good for easing those symptoms. I hope in a couple of days the diarrhoea will be a thing of the past.
I am getting a bit worn down by the relentlessness of each day by the bedside, but the few hours at home each night are an island of bliss in the sea of stress.
Leanne
Peter is also breathing more clearly and has less phlegm to bring up and he has been able to stand without assistance from the bed and do a few dozen "walking on the spot" exercises. All huge leaps of positive progress as far as I am concerned. I know this is due to the continuation of fluids, food and most crucially, the antibiotics which are holding everything (infection-wise) in check. I am hoping that they continue to do so, to allow Peter to get on top of the infection.
On the other hand, he is more anxious and distressed when I leave in the evening and has had to have some anti-anxiety medication. Sometimes I get phone calls after I have come home in the evening, which has necessitated me ringing the staff on his behalf, which I am sure is not something they are too thrilled about especially when busy.
We have not been playing too much scrabble lately as peter has been sleeping a fair bit when he has done his exercises. I have started to find his strategies also work for me and I think that Peter doesn't enjoy losing to me on rare occasions (but then I hate losing too).
Physios and Nutritionist continue to be super helpful and very positive about Peter's progress. He is tolerating the liquid food but is still having "clinical diarrhoea" which the nutritionist is now treating with Hi Maize, a starchy fibre supplement which looks like corn flour and apparently is good for easing those symptoms. I hope in a couple of days the diarrhoea will be a thing of the past.
I am getting a bit worn down by the relentlessness of each day by the bedside, but the few hours at home each night are an island of bliss in the sea of stress.
Leanne
Friday, August 14, 2009
Stable and making a little progress
Peter has seen the dietitian and she has confirmed our understanding that he should be on full strength liquid food and have it gradually introduced with ever increasing amounts if he tolerates it, so that he gets back to a normal amount of calories and protein. So now the watering down of his food and the 30% amount regime has been changed, fibre increased and a review will occur on Monday to see how it's been tolerated. Dr P said he was happy to take advice on that as he wasn't an expert in nutrition and was willing to learn. So that's very positive. Thank goodness for skilled allied health staff.
Peter has been able to stand up from the bed with assistance (often not requiring it but having it there in case he has a moment of weakness). He is also relieved to be able to be wheeled to the toilet a couple of times a day. He has also been assiduous in doing his leg exercises in bed and feel the benefit of them already although his calf muscles are incredibly reduced in size and strength after the 3 weeks in bed. Again, many thanks to the physiotherapists who have been helping us with that.
He is still very tired much of the time, especially after exertion but I can see colour returning to his cheeks and Dr P said yesterday how much better he is looking and that clearly I should keep doing what I have been doing because it is working. I don't know whether Peter will be able to come home, but it remains our aim and perhaps in a week or two he will have gathered more reserves of strength from the full strength food to be able to build up his strength. He is still needing to bring up the sputum which is infecting his lungs and get on top of that if at all possible. I am hoping his system can recover from this terrible illness. Whether it can or not, time will tell.
Will keep you posted as and when I can.
Leanne
Peter has been able to stand up from the bed with assistance (often not requiring it but having it there in case he has a moment of weakness). He is also relieved to be able to be wheeled to the toilet a couple of times a day. He has also been assiduous in doing his leg exercises in bed and feel the benefit of them already although his calf muscles are incredibly reduced in size and strength after the 3 weeks in bed. Again, many thanks to the physiotherapists who have been helping us with that.
He is still very tired much of the time, especially after exertion but I can see colour returning to his cheeks and Dr P said yesterday how much better he is looking and that clearly I should keep doing what I have been doing because it is working. I don't know whether Peter will be able to come home, but it remains our aim and perhaps in a week or two he will have gathered more reserves of strength from the full strength food to be able to build up his strength. He is still needing to bring up the sputum which is infecting his lungs and get on top of that if at all possible. I am hoping his system can recover from this terrible illness. Whether it can or not, time will tell.
Will keep you posted as and when I can.
Leanne
Monday, August 10, 2009
Some positives
On the weekend I asked if Peter could be assisted to stand out of bed to see if it was a possibility. This caused some concern that I was seeking to ask Peter to do things he couldn't do any more. After consultation with the weekend doctor, I was assisted to do so on Saturday after lunch. Peter was unsure whether he could stand or not but he did it with very little assistance even though he has lost a lot of his calf muscles because of being in bed.
As the next step, I asked that if he succeeded with that milestone, he be placed in the commode chair and wheeled to the toilet so he didn't have to be toileted in bed - a very distressing situation for Peter. He managed this well and was relieved to be able to do so. The next thing I asked was that he have a shower if possible (sitting on the commode chair in the shower) . He managed this well and really enjoyed having his first shower in 20 days. Afterwards he looked better and felt better but was advised that perhaps he should only do that every 2nd day.
We were also told that if he wanted to get out of bed and should happen to fall then no one would catch him because nurses are not covered for injuries sustained in this way. This frightened Peter a great deal. So I said that while ever I was there and he wanted to get up I would support him physically and if he should want to get up to the toilet when I wasn't there then he should ask for the lifting machine or a bedpan and as a last resort, the adult incontinence pad.
We were also told that if he wanted more active treatment then he would need to go to a hospital. I am keen for him to be able to stand and walk 4 steps so I can take him home if at all possible. I know this might not be possible, but we would both want to be able to do so if we could.
Yesterday, Sunday, he asked to go to the toilet in the same manner and also asked for another shower and hair-wash, which he accomplished well. An hour or so later he asked if he could get up into a chair and a deluxe chair was provided which has air cells in the seat to support but not add to pressure problems. It was a real pleasure for Peter to have a different outlook through the sliding doors and to be able to be out of the bed. He said he didn't want to be bedridden.
He sat in the chair for 3 hours, played scrabble (and beat me YET AGAIN!) and had a visitor before asking to go back to bed. That was 2 hours longer than anticipated. Also he got up successfully again about an hour later for another toilet stop. As he said "I'm not aware that lying in your own mess is considered a beauty product for the skin!"
I have just received an SMS from Peter now (8.44am) asking when I cam coming in as he is waiting on me to have another shower. So he is still with us and very engaged.
We understand from the weekend doctor that perhaps all we can hope for is a suppression of the pneumonia with antibiotics and that this may still kill Peter and we don't know how long that might be. However, as Peter has expressed very clearly: "While I am alert and compus mentus I want to keep living."
So on that basis I have asked the physiotherapist to come to see him to help with his leg strength and standing stability, as well as what we can do to keep up the drainage of the fluid on his immobile right arm while trying to avoid the pressure area on his elbow getting worse; also to keep up the clearing of his chest - the most important thing of all. Also I hope the nutritionist can visit today so we can adjust his feeds to allow for his condition and the fact he wasn't on enteral feeds for 2 and a half weeks.
So, in Peter's current situation, I am reminded of the famous Monty Python "Plague" skit : "I'm not dead yet......" and what a wonderful thing that is.
Motto for this week: Don't ever give up and don't take everything someone else tells you as read!
As the next step, I asked that if he succeeded with that milestone, he be placed in the commode chair and wheeled to the toilet so he didn't have to be toileted in bed - a very distressing situation for Peter. He managed this well and was relieved to be able to do so. The next thing I asked was that he have a shower if possible (sitting on the commode chair in the shower) . He managed this well and really enjoyed having his first shower in 20 days. Afterwards he looked better and felt better but was advised that perhaps he should only do that every 2nd day.
We were also told that if he wanted to get out of bed and should happen to fall then no one would catch him because nurses are not covered for injuries sustained in this way. This frightened Peter a great deal. So I said that while ever I was there and he wanted to get up I would support him physically and if he should want to get up to the toilet when I wasn't there then he should ask for the lifting machine or a bedpan and as a last resort, the adult incontinence pad.
We were also told that if he wanted more active treatment then he would need to go to a hospital. I am keen for him to be able to stand and walk 4 steps so I can take him home if at all possible. I know this might not be possible, but we would both want to be able to do so if we could.
Yesterday, Sunday, he asked to go to the toilet in the same manner and also asked for another shower and hair-wash, which he accomplished well. An hour or so later he asked if he could get up into a chair and a deluxe chair was provided which has air cells in the seat to support but not add to pressure problems. It was a real pleasure for Peter to have a different outlook through the sliding doors and to be able to be out of the bed. He said he didn't want to be bedridden.
He sat in the chair for 3 hours, played scrabble (and beat me YET AGAIN!) and had a visitor before asking to go back to bed. That was 2 hours longer than anticipated. Also he got up successfully again about an hour later for another toilet stop. As he said "I'm not aware that lying in your own mess is considered a beauty product for the skin!"
I have just received an SMS from Peter now (8.44am) asking when I cam coming in as he is waiting on me to have another shower. So he is still with us and very engaged.
We understand from the weekend doctor that perhaps all we can hope for is a suppression of the pneumonia with antibiotics and that this may still kill Peter and we don't know how long that might be. However, as Peter has expressed very clearly: "While I am alert and compus mentus I want to keep living."
So on that basis I have asked the physiotherapist to come to see him to help with his leg strength and standing stability, as well as what we can do to keep up the drainage of the fluid on his immobile right arm while trying to avoid the pressure area on his elbow getting worse; also to keep up the clearing of his chest - the most important thing of all. Also I hope the nutritionist can visit today so we can adjust his feeds to allow for his condition and the fact he wasn't on enteral feeds for 2 and a half weeks.
So, in Peter's current situation, I am reminded of the famous Monty Python "Plague" skit : "I'm not dead yet......" and what a wonderful thing that is.
Motto for this week: Don't ever give up and don't take everything someone else tells you as read!
Thursday, August 06, 2009
In Situ at the Hospice
Peter is now in Clare Holland House. He has a lovely room and it is large enough for a sofa bed so I can stay if needed. Although I find that the 11 or so hours a day I am there is very full on and it is a good break to drive home and crawl into my own bed.
There are still a few glitches with Peter's care and with the staff understanding what his frustrations and anxieties are. Mostly Peter gets angry when people can't hear him or don't do things he needs when he needs them. This is because he can't help himself, can't get out of bed now, can't get a glass of water to rinse out his parched mouth, can't sometimes reach the call button if it hasn't been put in his reach and can't call for help because his the oxygen dries him out so much he can only whisper until he has a reviving rinse with water. There is also a difference between his anxiety and frustration about these care related items and the overall possible end stage palliative care issues. Yesterday, it was interpreted that he was in respiratory distress so some Valium-type drug was given and he slept for 3 hours. But he woke wondering why he had been asleep and where the 3 hours had gone. He says he doesn't need that kind if intervention unless he asks for it, which he has done in the past in the hospital, and that all he was, was frustrated and angry.
Anyway, my mother is here with me now and she said the moment I walked in the door and he told me about his issues, and I said I would sort them our, Peter visibly relaxed and let go with relief. I certainly spend most of my time with Peter letting the shifts of staff know about how Peter likes to be cared for, what his history is, what he wants, doing chest physio and arm work to reduce the swelling in his immobile right arm, doing mouth and nose care, sorting out medications (trying to ensure he gets what he needs from both the ongoing drugs he was used to at home and the newer ones he has had in hospital) as well as his oxygen flows etc. It's more than a full time job and I do end up very tired at the end of the day (around 8 or 8.30pm).
We have seen Dr P a few times. Peter still believes that there is a chance he can recover and he has said so to me and to the evening nurse. Yesterday he continues to try to clear his lungs, do the chest physio, lying on his side to give his pressure sores a rest as well as drain his right lung. He was also allowed to return to his liquid food through the Peg site on the proviso that it didn't cause fluid overload in his lungs etc. I was so relieved at that and we were able to start it again on Tuesday night as I had brought a supply and the pump with me. I am concerned about his kidneys and hope that they can keep going.
I know the hospice staff think that I have unrealistic expectations of the chance of a recovery and that Peter and I are kidding ourselves if we think he will get over this illness. But I cannot sit by and do nothing while he continues to have confidence in me and looks to me for the relief of his situation. While ever he remains as totally switched on as he is and continues to ask me for help I will do everything in my power to assist him. And if there is a slim chance of recovery and we get it, then I will be so relieved and Peter will feel vindicated about never giving up, as he has come back from pneumonia and infections before.
We both know there is always the cancer or the next illness and we will probably be equally unprepared to give up on him at that point, if we have another chance. But when you love someone and can actually assist to help improve their comfort, reduce their anxiety and advocate on their behalf, then, for me, there is absolutely no other path than to continue to do so while ever there is a tiny hope and Peter wants me to do so, which he does.
Thanks for the emails, phone calls, flowers and visits. All very appreciated. Sorry if I haven't responded to you personally, but I feel sure you understand.
Leanne
There are still a few glitches with Peter's care and with the staff understanding what his frustrations and anxieties are. Mostly Peter gets angry when people can't hear him or don't do things he needs when he needs them. This is because he can't help himself, can't get out of bed now, can't get a glass of water to rinse out his parched mouth, can't sometimes reach the call button if it hasn't been put in his reach and can't call for help because his the oxygen dries him out so much he can only whisper until he has a reviving rinse with water. There is also a difference between his anxiety and frustration about these care related items and the overall possible end stage palliative care issues. Yesterday, it was interpreted that he was in respiratory distress so some Valium-type drug was given and he slept for 3 hours. But he woke wondering why he had been asleep and where the 3 hours had gone. He says he doesn't need that kind if intervention unless he asks for it, which he has done in the past in the hospital, and that all he was, was frustrated and angry.
Anyway, my mother is here with me now and she said the moment I walked in the door and he told me about his issues, and I said I would sort them our, Peter visibly relaxed and let go with relief. I certainly spend most of my time with Peter letting the shifts of staff know about how Peter likes to be cared for, what his history is, what he wants, doing chest physio and arm work to reduce the swelling in his immobile right arm, doing mouth and nose care, sorting out medications (trying to ensure he gets what he needs from both the ongoing drugs he was used to at home and the newer ones he has had in hospital) as well as his oxygen flows etc. It's more than a full time job and I do end up very tired at the end of the day (around 8 or 8.30pm).
We have seen Dr P a few times. Peter still believes that there is a chance he can recover and he has said so to me and to the evening nurse. Yesterday he continues to try to clear his lungs, do the chest physio, lying on his side to give his pressure sores a rest as well as drain his right lung. He was also allowed to return to his liquid food through the Peg site on the proviso that it didn't cause fluid overload in his lungs etc. I was so relieved at that and we were able to start it again on Tuesday night as I had brought a supply and the pump with me. I am concerned about his kidneys and hope that they can keep going.
I know the hospice staff think that I have unrealistic expectations of the chance of a recovery and that Peter and I are kidding ourselves if we think he will get over this illness. But I cannot sit by and do nothing while he continues to have confidence in me and looks to me for the relief of his situation. While ever he remains as totally switched on as he is and continues to ask me for help I will do everything in my power to assist him. And if there is a slim chance of recovery and we get it, then I will be so relieved and Peter will feel vindicated about never giving up, as he has come back from pneumonia and infections before.
We both know there is always the cancer or the next illness and we will probably be equally unprepared to give up on him at that point, if we have another chance. But when you love someone and can actually assist to help improve their comfort, reduce their anxiety and advocate on their behalf, then, for me, there is absolutely no other path than to continue to do so while ever there is a tiny hope and Peter wants me to do so, which he does.
Thanks for the emails, phone calls, flowers and visits. All very appreciated. Sorry if I haven't responded to you personally, but I feel sure you understand.
Leanne
Tuesday, August 04, 2009
Moving to Hospice
Yesterday we were able to see Dr P___ the very excellent palliative care specialist whom Peter has been seeing for over 18 months and who knows him very well. Peter trusts him absolutely and he has shown himself to be, time and again, the very best doctor we have encountered. His knowledge is huge, his capacity to patiently explain things is boundless and his compassion, friendliness and support has been second to none.
Peter's first question was "Can I fight this and recover or is it going to be the end?" Dr P said there was a very slender possibility that Peter could recover from the pneumonia but that the likelihood was that this would be his terminal illness.
I asked whether he could be saved if he showed signs of improvement and DR P said yes, which was a relief to me that the course of action could be changed if there was that miracle.
Peter said: "You said a long time ago that if the time came you could help me by making things painless, panic and anxiety free and you could keep my airways clear so I wouldn't suffocate or choke. Can you do that for me"" Dr P said that if that was what he wanted then it was not only Peter's right to have that care but it would be Dr P's personal honour to assist him to do so. peter said he didn't want to die but if he had to then he wanted to "drift off" as if gently going to sleep.
Dr P said he could do that and more to help Peter and that the best thing was for him to be moved to the hospice where he, Dr P, would also be on duty for the next 2 weeks. Suddenly we both felt marginally better. Me, because the struggle with the Intensivists to keep Peter going and to see him as more than just his illnesses on paper has been taken over by an excellent and caring doctor who will do whatever he can; and Peter because I think he trusts Dr P implicitly. Peter said to me after his first meeting with Dr P early in 2008 "If his is the last face I ever see, I will be happy". At the time I thought: "That's a relief to finally find a doctor who is so good and caring and will be here if we come to that point". I am so glad that Dr P has just come back from leave yesterday and so should be able to be with us throughout this period.
So Peter will be moving to Clare Holland House after 9am today sometime, having medications through the Peg tube again and I hope that he can be kept hydrated enough with that, despite the leakage problems we have been experiencing. I am going to ask Dr P if we can introduce some of Peter's liquid food again, even tiny amounts, as I am physically ill to think that he may end up dehydrated and starved, as I want to grab that slim chance that we can revive him. I know that there is still the cancer to answer to but this may have a tiny chance to be beaten and I want to do every single thing in my power to grab it if it comes within reach.
Will update again as soon as I can.
Leanne
Peter's first question was "Can I fight this and recover or is it going to be the end?" Dr P said there was a very slender possibility that Peter could recover from the pneumonia but that the likelihood was that this would be his terminal illness.
I asked whether he could be saved if he showed signs of improvement and DR P said yes, which was a relief to me that the course of action could be changed if there was that miracle.
Peter said: "You said a long time ago that if the time came you could help me by making things painless, panic and anxiety free and you could keep my airways clear so I wouldn't suffocate or choke. Can you do that for me"" Dr P said that if that was what he wanted then it was not only Peter's right to have that care but it would be Dr P's personal honour to assist him to do so. peter said he didn't want to die but if he had to then he wanted to "drift off" as if gently going to sleep.
Dr P said he could do that and more to help Peter and that the best thing was for him to be moved to the hospice where he, Dr P, would also be on duty for the next 2 weeks. Suddenly we both felt marginally better. Me, because the struggle with the Intensivists to keep Peter going and to see him as more than just his illnesses on paper has been taken over by an excellent and caring doctor who will do whatever he can; and Peter because I think he trusts Dr P implicitly. Peter said to me after his first meeting with Dr P early in 2008 "If his is the last face I ever see, I will be happy". At the time I thought: "That's a relief to finally find a doctor who is so good and caring and will be here if we come to that point". I am so glad that Dr P has just come back from leave yesterday and so should be able to be with us throughout this period.
So Peter will be moving to Clare Holland House after 9am today sometime, having medications through the Peg tube again and I hope that he can be kept hydrated enough with that, despite the leakage problems we have been experiencing. I am going to ask Dr P if we can introduce some of Peter's liquid food again, even tiny amounts, as I am physically ill to think that he may end up dehydrated and starved, as I want to grab that slim chance that we can revive him. I know that there is still the cancer to answer to but this may have a tiny chance to be beaten and I want to do every single thing in my power to grab it if it comes within reach.
Will update again as soon as I can.
Leanne
Sunday, August 02, 2009
Bad News
Peter has come towards the end of his journey and I weep while writing this at his hospital chair side. Today the Intensivist said that while he has made some progress that he hasn't improved as much as they had hoped and that he is getting weaker.
We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.
Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).
This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.
They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.
It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.
Leanne
We have had a very harrowing discussion - Peter, the Intensivist(a good one who has been on for the last 4 days and has taken a lot of time to talk with us) and I - I can't see why they can't keep actively treating him but the doctor says that she can see he is battling but not winning.
Peter is so tired, he says he just wants to drift away as painlessly and comfortably as possible now. I have found this too difficult to bear as he has come through other fights!! I know how he has shown them before that they were wrong but he seems to have lost his strength now. He said this morning: "I feel like I have come to the end of my rope". He is also getting more anxious and distressed, and so Valium and morphine are being used in small regular doses to help as I think it is all too much for him - he is very scared. Soon they will end his intravenous feeding and revert to fluids only (glucose and water intravenously).
This weekend is our 16th anniversary of being together. Today is our 4-week anniversary of being married.
They say he may only last a few more days, maybe not through to this time next week. I have tried so hard to keep him with me over the past 5 and 1/2 years and nothing I do now seems to be able to convince the doctors, and now Peter, that there is hope still. They are telling me there is none and that Pseudonmonas pneumonia is very life threatening and with his cancer and the chemotherapy the risk factors are even higher.
It is 2.07pm Sunday 2 August and they have just switched off his food intravenously and are now putting up the glucose fluids. He is still on one antibiotic. This is the beginning of the end I think. He is awake but a little groggy. I have been holding his hand. Nothing more to say right now. Don't want him to go. Am frightened for him and he is scared too. This is one of the worst days we have ever had to face.
Leanne
Saturday, August 01, 2009
Some Positive Progress
Yesterday (Friday 31 July) Peter was able to fit in his full exercise plan by getting the nurses to start him early (6am) and then have the physio take over during the day and the last one of the day with me and 1 nurse. This involves getting the electric recliner chair to stand him up and then he walks on the spot for 25 steps and takes 3 deep breaths, with a rest in between each of these things. After each of the 6 occasions on which he did this he was totally exhausted and breathless, but did recover quite well especially earlier in the day. The last time was at 5 pm and he took longer to recover but still did well. He slept at intervals after the exercises until the next set of observations or his next exercise.
The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.
I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.
If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.
Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.
He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.
So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.
Leanne
The new Intensivist he has (until Monday morning when they rotate again) is also a lung doctor and she was pleased with his progress yesterday. He moved from the "non re-breather mask" to the "Hudson mask" without much difficulty yesterday although he was reluctant to give it up the day before. He was largely able to maintain good oxygen saturation levels on the Hudson mask.
I also took in my laptop and organised a mobile broadband USB key so he was briefly able to see what I had written on the blogs and also check out a few emails, which kept him interested for a while.
If all goes well over this weekend (fingers and toes crossed) then they may see if they can change his Peg tube early next week as it is still leaking a lot of bright yellow intestinal juices which are causing pain because they excoriate the skin and make it raw.
Peter has also been moved into a room rather than being in the open ICU area, which is a bit more comfortable for me and he gets to see outside, but he is not in view of the nurses station and that has been worrying him in case he is in need but they don't respond quickly enough. He has also been sitting up and sleeping in the electric recliner chair as that is better for his lung expansion. Although, as you can imagine, only getting out of the chair 6 times a day for a few minutes, means he is having some painful pressure areas on his bottom.
He has had a few welcome visitors from work colleagues, which he has really appreciated, although the visits have to be necessarily very brief to either fit in with his regime or because he is so tired after each one. The nurses have said 5 - 10 minutes only per visit and 2 people per time. But Peter has been very interested in what everyone is doing now. His observation that not a lot seemed to have changed in the 3 years since he had left is probably true of many large organisations.
So the challenge continues over this next 2 days - more exercises with the hope that they shift the phlegm in his lungs and the doctors will continue to treat him as he wishes, which is that they don't give up on him.
Leanne
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