Friday...............

I can't believe it's Friday already. Some parts of the week have really dragged, while at other times it's just flown by. The good news is that everything came together today.

The PEG nurse had phoned the next morning to make sure I was happy to do the feeds on my own. Today the dietitian called, to fill in a few gaps and to answer a couple of questions I had dropped on the PEG nurse. At least they talk to each other.

The food suppliers phoned and have arranged to deliver a months supply of the 'beige chemical soup' on Wednesday of next week. Finally, Tina, one of the community nurses asked if she could drop in on us to sort out what was needed from them and what back up they would be able to supply. She had been visiting my cousin, who lives two doors away, so it was a case of killing two 'old birds' with one stone.

I felt a lot happier after seeing Tina. She's known Cag for over five years and doesn't have to ask the questions that other would ask. She checked her out physically and told me what I must work on as far as physio is concerned, and what other problems to watch out for. So the future looks a little more rosy than it did a day or two ago.

It very much depends on Cag, and just how much effort she can and will put into her own recovery. It's not been a great deal in the past, but she is at a stage where choices soon will be taken out of her hands, and there will be no way back. I will do my bit. What else is there for me to do? At least I know there are others who can help.

On a happier note, I'm going to win £14 million tomorrow.................. well at least I've bought a ticket!

Home......... at last.

It should have been yesterday. The discharge had been approved by the doctors after their morning round. Everything that could be achieved in hospital had been done. It was now a case of regular feeding and encouragement to eat a little by mouth.

A Monday morning is not the best time to try to arrange all that was needed, and as some of the equipment would not be there until later in the afternoon, so I was asked to collect Cag at eleven o'clock this morning. She would be dressed and ready................ and she was.

I was expecting a change in Cag, and of course there is. She's not so mentally alert or as physically strong as she was. Five weeks of doing nothing has taken it's toll. It's now up to me, us, to work with what we have and try for some improvement. Not an easy task with M.S.

I did feel sorry for her travelling home. I was sure there had been 'an accident'. One has a nose for this sort of thing. Sure enough, the hospital sent her home with a little surprise for me. I'm pretty sure she had been dosed with Senna, probably last night. It's not the first time I have heard of this. Of course, she wouldn't know. It's so easy to do through the PEG......... but a little warning would have been appreciated.

I've just finished setting up the over night feed. I've made about all the mistakes it was possible to make, but thankfully I did it here and not when 'the eyes' were on me. Cag is still a little confused, and still can't quite believe she is home. I see her glancing around, just making sure she is where she wants to be. Now the work begins, the physical and the mental.

Beats working for a living!

Wednesday the 13th............

Thirteen, unlucky for some, but not us thank goodness. Cag has had the PEG fitted and all went well, very well. It really is a neat job, a small white plastic clip with the feeding tube running from it. Long enough so as not to be felt when the connection is made but easy to gather up when not in use.

Today, Thursday, Cag was very 'out of it'. It might have been a reaction to the operation but I'm guessing that the stay in hospital has treated her mind less well than I had hoped for. I saw the doctor about my fears and she thinks that she will probably recover her spirit after a few days at home, but I have doubts.

The Staff Nurse arrived, just before I was due to leave, and asked me to watch how the feed was prepared and administered. It took minutes. A machine delivers the feed, the correct amount, over a given time, usually done at night, so the recipient doesn't even know that the feed is taking place. Easy! I had asked Cag earlier if she had received anything via the PEG during the day, and she said she hadn't. The charts showed a different story, so she hadn't even realised she had been fed.

It's my turn tomorrow, with the nurse standing by and giving instructions. The next day it will be totally my turn, with all eyes on how I do, and if that satisfies the eyes, Cag may be allowed home on Monday.......... but if it's a day later or so, then that's O.K as well.

I understand it can be used for wine. Might even ask if I can have one............. but I like to taste too much, so that wouldn't work. But seriously, it will take adjustments on both our parts. I know I can handle what life brings, and I only hope Cag can cope with what comes her way.

Horizon in sight?

For a Monday, it's been very positive. I was told last week that the PEG operation was down for this week. It was confirmed today. It will be tomorrow morning.

I saw the doctors this afternoon and signed the permission form on Cag's behalf. I did ask her once again is she was sure and she said that she wasn't, but there is no other option, and I did get her agreement finally. The doctor explained about the risks, the same as with any procedure, but really we have no other choice.

Providing everything goes well, she will be back on the Ward by 2 p.m. A few days for the PEG to settle down, to make sure it's working well, and then Cag can come home. Next Monday being the aim.

The rest of my visit was taken up with an interview with an Occupational Terrorist .......... I mean Therapist, who was checking if we needed any additional support when Cag gets home. Later we saw the Physio Therapist, who wanted to see how I managed to move Cag without the aid of a hoist. I lifted her out of bed, into her chair, and then a few minutes later returned her to the bed. No problem. I still doubt if she weighs more than 38 kilo, even with 4 weeks of feeding.

So now it's more waiting, but at least we have a date in sight, and something to look forward to. I still wonder what they will be sending home to me, but it's got to be better than the last four weeks. I'll keep you posted. X

It still goes on........

I'm still driving daily to and from Truro to see Carole each afternoon. She's on a 1000 cals a day drip, plus whatever other food she will take orally. Without the drip I'm sure she wouldn't be here now. Her kidneys were very close to stopping work, which would have more than serious for someone with M.S. There would have been very little anyone could have done.

I managed to see the doctor today. They are so young, but seem to know what they are doing. She asked how Carole and I felt about having a peg, a stomach feeding tube fitted. I had only just finished telling Carole that as far as I could see it was the only way she was going to get home any time soon. Carole said 'yes' to the doctor straight away and I said I was all for it. It would take the pressure off both of us. She, with needing to eat and drink, and me, seeing that she has sufficient to sustain her. It was not a road either of us wanted to travel, so hopefully it may only be temporary.

So now it a case of waiting for the job to be done. Hopefully I will see the dietitian tomorrow and be able to discuss with her just exactly what Carole will be able to eat. Whether it will need to be a puree or just a soft diet. When and how to use the peg, and whether it will be a manual or mechanical method of feeding. All good stuff!

Apart from that, every thing is fine. I'm up to my eyes in peas and three types of beans. This rain has certainly done our garden a bit of good. I also took a trip out to the Citroen dealership today to arrange for delivery of the new car for October. Of course, they've changed the model and the price has gone up, only to be expected, but every thing's set now and wheels are in motion.................. so to speak.

I really can't wait for things to get back to normal, but I'm afraid that life will never be quite the same again. There is always a price to pay, but lets hope that the cost to our lives is within reason.

Requested update...........

The progress has been slow, very slow at times. A few ounces gained and then a few lost. At last today some more positive news.

Cag was sat out today when I got to the ward, the first time. They had weighed her then left her in the chair rather than putting her back in bed. She is still very weak and about an hour was all she could manage, but It's a start. I managed to catch the Ward Sister and asked about plans as I need to let certain people know regarding the benefits we receive.

The Sister said that they were increasing the feeds by tube and increasing the amount Carole was taking orally. There was a possibility that she could be moved to our local hospital early next week but that would depend on bed availability. Progress was steady but she thought that Carole would be in hospital care for about another three weeks.

The Dietitian dropped in just before I left and she confirmed what the Sister had told me. She said that a PEG, a stomach feeding tube, was being considered, not so much for the food but to assist with liquid intake. Food in a puree state is easy to swallow, but a liquid can be difficult. It often goes down the wrong way.

Cag won't like it, but it would take a lot of responsibility and worry off me. I would hate to think she would slip back to what she was doing when she finally gets home, and knowing her, I could see that happening.

Now the question that is in my mind. Who will they send home to me? Not the person that went into hospital, mentally or physically. Her mind now is even more fragile than it was three weeks ago, and I can see that much of what she used to be able to achieve is now history.

Any set back for a person with M.S is serious. 'If you don't use it you loose it' applies even more to an M.S sufferer. It doesn't worry me. I know I will be able to deal with what they leave me but I'm so disappointed for Cag. When you have so little, every loss no matter how small is precious.

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Happier days............ when striped pullovers were in!