There's been a little change in our situation. A step forward, one back, then a little shuffle forward again. I managed to see the dietitian, and the consultant on Friday. The dietitian said that they would continue what they were doing in the way of feeding until after the weekend, then start to increase the intake a little at a time. The consultant was positive, but said that progress would be slow. We can live with that.
Saturday brought a surprise. Cag had managed to pull out her feeding tube over night. She was a little brighter but still very pale. The nurses were doing hourly feeds, with small amounts fortified desserts and thickened shakes, rather than replacing the tube right away. Cag was managing but I could see she was not happy. Her hands were very swollen, but that was due to the re hydration, and it should right itself as soon as she recovers a little more.
I really didn't know what to expect today. I wasn't surprised to see the feeding tube had been replaced. I understand there was quite a bit of coercion but finally Cag agreed. She was waiting for an X-ray to make sure the tube was in the right place before they could start feeding, and was still taking small amounts of food orally. I even managed tempt her with some soft chocolate.
She's bored and complaining, so I know she is a little better. And spending money! Strange how a woman can be very ill, in hospital, and still spend money. So hopefully the progress may not be as slow as the 'powers that be' thought. You know what retail therapy can achieve. We can but hope.
Sunday 20 July 2008
Wednesday 16 July 2008
Shape of things to come...........
It was the first day of visiting now Cag has been settled and is out of the admissions ward. It was a bit of a shock. She really looks very poorly. She was asleep when I arrived, head to one side, tubes and drips, and looking very pale.
She did brighten up when she knew I was there but soon drifted back into sleep again. The speech therapist arrived later and woke her to do a swallowing test. She managed but only just. Later on, a young girl, who said she was a doctor, came to take blood. She asked about Cag's history, medication she was on, and generally how she coped with life. She seemed to know a lot more than her years, but admitted she knew very little about M.S. She did say that it was going to be a long job, so not to expect very much, at least in the short term.
It seems the information I was given yesterday about it taking about three weeks may have been optimistic to say the least. I did my usual rounds of phoning the family when I arrived home, to pass on what little more news I could. They have all offered to come and visit, but there is little point as yet until the re hydration and feeding have had some chance to work. Hopefully soon, very soon.
And now a thought for the day. A woman should always marry an archaeologist. The older she gets, the more interested he becomes. Are there any women archaeologist out there? ;-)
She did brighten up when she knew I was there but soon drifted back into sleep again. The speech therapist arrived later and woke her to do a swallowing test. She managed but only just. Later on, a young girl, who said she was a doctor, came to take blood. She asked about Cag's history, medication she was on, and generally how she coped with life. She seemed to know a lot more than her years, but admitted she knew very little about M.S. She did say that it was going to be a long job, so not to expect very much, at least in the short term.
It seems the information I was given yesterday about it taking about three weeks may have been optimistic to say the least. I did my usual rounds of phoning the family when I arrived home, to pass on what little more news I could. They have all offered to come and visit, but there is little point as yet until the re hydration and feeding have had some chance to work. Hopefully soon, very soon.
And now a thought for the day. A woman should always marry an archaeologist. The older she gets, the more interested he becomes. Are there any women archaeologist out there? ;-)
Tuesday 15 July 2008
The bad news and the bad news....
Cag was admitted to hospital last night. She had a difficult day, and had a couple of bouts of not being able to clear her chest, coughing, almost choking. I was not happy about her situation so called the emergency doctor. He checked her over and phoned for an ambulance, saying that she ought to be looked at in hospital, the sooner the better.
I phoned this morning to find out how she was and was asked to go to the hospital to meet with the doctor, as she was refusing medical intervention. I was there by 10.30am but was unable to see the doctor until about 2pm, because of other emergencies. It gave me time to work on Cag and to get her to agree to accept examination and treatment. All she wanted to do was to come home, but if she does she will die, pure and simple.
She is now on a drip and has a feeding tube fitted, and I heard tonight that she has taken a small amount of nourishment this way. I talked with the dietitian before I left this evening and she asked me how heavy Cag was. I knew because I had weighed her on Sunday............ 32 kilos, about 5 stone. She did warn me that this was borderline and that feeding would have to be small and often. It may take three weeks or more to see an improvement, but at least something is being done ........ at last.
Cag is not the best patient. She is hating every minute of it, but I know I have done all I can here and she needs the sort of help the she can only receive where she is. I can't help feeling guilty at allowing her to go into hospital, but the alternative is unthinkable.
I phoned this morning to find out how she was and was asked to go to the hospital to meet with the doctor, as she was refusing medical intervention. I was there by 10.30am but was unable to see the doctor until about 2pm, because of other emergencies. It gave me time to work on Cag and to get her to agree to accept examination and treatment. All she wanted to do was to come home, but if she does she will die, pure and simple.
She is now on a drip and has a feeding tube fitted, and I heard tonight that she has taken a small amount of nourishment this way. I talked with the dietitian before I left this evening and she asked me how heavy Cag was. I knew because I had weighed her on Sunday............ 32 kilos, about 5 stone. She did warn me that this was borderline and that feeding would have to be small and often. It may take three weeks or more to see an improvement, but at least something is being done ........ at last.
Cag is not the best patient. She is hating every minute of it, but I know I have done all I can here and she needs the sort of help the she can only receive where she is. I can't help feeling guilty at allowing her to go into hospital, but the alternative is unthinkable.
I wonder what tomorrow will bring?
Thursday 10 July 2008
I'll get back to you..........
"I'll get back to you........." Oh how I hate those words, because it usually means you'll be hanging on and waiting for a telephone call that may never come. That's what the week has been like for me.
Yesterday, I'd had enough. Cag's eating problem has not been improving, no matter how hard we try, and we DO try. It's now a case of just a couple of spoon fulls of mousse, or sips of coffee, will set her choking, then urging, and then of course, she won't take any more. Her total daily intake of calories must be under 200 and liquid consumption below a pint. This situation can not go on. I phoned the doctor's receptionist and demanded a visit.
I was hoping for something a little more positive but there has been, perhaps, a little progress. The 'practice matron' called to see Carole. (Where do they get these names?) Needless to say, the name was Chris and HE was a tiny bit gay.
He arrived 45 minutes late, just as I was about to get Cag back to bed. She had been up an hour and was failing fast. He was one of these ........ "How are you feeling"................. leaning forward............... " how are you REALLY feeling?" type of people. To which Cag answered "Fine!"
He checked out her swallowing and he said that he thought it was o.k. Then he generally questioned her about how she felt about food, wanting to eat or not. Checked her for depression, cup half full or half empty sort of questions, then asked her directly if she felt depressed. Of course she said "No".
He brought with him a selection of high calorie drinks and mousse style deserts for her to try. She said she would try, and I said I would encourage her....... but I'm not holding my breath.
He's made arrangements to call again next Thursday, along with a speech therapist ( she's into swallowing and breathing techniques ), who he thinks may be able to help. I'm not very impressed with the idea, but we shall see.
So now it depends on Cag, how much she wants to do. Wish I was more excited about the prospects, but I can only do what she will let me. More waiting, more worrying.
Never mind. My new gin and tonic diet is working great. I've lost four days this week.
Yesterday, I'd had enough. Cag's eating problem has not been improving, no matter how hard we try, and we DO try. It's now a case of just a couple of spoon fulls of mousse, or sips of coffee, will set her choking, then urging, and then of course, she won't take any more. Her total daily intake of calories must be under 200 and liquid consumption below a pint. This situation can not go on. I phoned the doctor's receptionist and demanded a visit.
I was hoping for something a little more positive but there has been, perhaps, a little progress. The 'practice matron' called to see Carole. (Where do they get these names?) Needless to say, the name was Chris and HE was a tiny bit gay.
He arrived 45 minutes late, just as I was about to get Cag back to bed. She had been up an hour and was failing fast. He was one of these ........ "How are you feeling"................. leaning forward............... " how are you REALLY feeling?" type of people. To which Cag answered "Fine!"
He checked out her swallowing and he said that he thought it was o.k. Then he generally questioned her about how she felt about food, wanting to eat or not. Checked her for depression, cup half full or half empty sort of questions, then asked her directly if she felt depressed. Of course she said "No".
He brought with him a selection of high calorie drinks and mousse style deserts for her to try. She said she would try, and I said I would encourage her....... but I'm not holding my breath.
He's made arrangements to call again next Thursday, along with a speech therapist ( she's into swallowing and breathing techniques ), who he thinks may be able to help. I'm not very impressed with the idea, but we shall see.
So now it depends on Cag, how much she wants to do. Wish I was more excited about the prospects, but I can only do what she will let me. More waiting, more worrying.
Never mind. My new gin and tonic diet is working great. I've lost four days this week.
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