Sunday, February 27, 2011

John has had a rough couple of days. There have been fewer and fewer times in the day when he is at all comfortable. The suction machine has run almost continually and the rigidity in his legs is getting worse.
It is so hard to not be able to find anything to do to help him.
Otherwise things have gone well - got to church today and Margie came with me as it snowed so she didn't want to drive to North Vancouver.
Two thumbs down

Thursday, February,24 2011

John slept well last night and had a fairly good morning and early afternoon. It seems as if about 4pm he gets into trouble. One of the other symptoms is that he sweats excessively during these times. Last night his clothes were sopping wet and his pillow behind his back was so wet it was not even dry by this morning.
Tonight is very similar.The suction machine has been running steadily since 4pm this afternoon.
I had to change the schedule of the workers for next Thursday because we will be going to see the neurologist in Vancouver that day. They got the information mixed up and did not send a worker for 9am this morning. They apologized and sent someone for 10am and fortunately John slept until then so it did not effect him much at all. But rather ruined my going for the Thursday coffee break here.
Our extended medical  phoned today saying they still cannot find the January medical receipts I sent in ($2000.00) or the request for the bed and mattress (in spite of it being listed on our account as under review). So I had to scan all the documents again today and e-mail them to them this time. They have promised to give them priority - I hope!!

Two thumbs down - all things considered.

Tuesday, February,22 2011

Another day - similar to the last few although John was worse today - there were several sessions of the meds not working and tonight he was quite tense because he said he could not get his breath. However, it passed and he was OK.
I had my respiste this afternoon - so went to lunch with Jan Ferris (our rector's wife and someone we had known from way back) . We had a good time talking about many friends and events in the past as well as current concerns.
Then I did some shopping etc. and made it back in time.
One of the men in our building died today. He went to hospital a week ago. Another one is in hospital and not doing well. Both men were at our Christmas dinner and looked so much healthier than John!!
We had another lovely sunny day today - although it was cold. Margie and I went to Curves tonight but we drove because of the temperature.

One thumbs down for today.

Monday, February 21, 2011

I didn't write anything last night and hesitated to do so tonight because there is not much to report. Right now we seem to have hit an impass - with John having parts of the day that are not too bad and the rest very difficult with the saliva and phlegm etc. There was about 400cc of fluid in his suction machine after today.
Yesterday i got to church and when Margie came over in the aftgernoon we went for a walk and the sat on the balcony in the sunshine and had some ice cream. 
Today was rainy so I stayed in and we had a quiet day.
Tonight one of John's ankles was quite swollen but he says it does not hurt. Since his feet are up all day I am not sure of the cause but will keep an eye on it.

Anyway, one thumbs down.

Saturday, February 19, 2011

Another day much like the last few - nothing much different.
Margie and Debbie were both over to see us today and had supper here. Debbie brought a bright ceramic trivet for us which she had picked up at Value Village. Believe it or not, it has the name LOMBARD on it.
That's about all for today.
But one thumbs down for John for today.

Friday, February 18, 2011

Well, last night was not too bad and this morning John felt quite well. Was able to get his hair washed.
But in the afternoon the congestion started again and he was quite misterable for some time. Then in the later part of the evening, like last night, it cleared up again and he was pretty good at bedtime. Odd.
Not sure whether to give it a thumbs down for the bad times or a thumbs up for the good ones.

Thursday, February,17 2011

John slept the whole night through which was wonderful. He had a better day today for most of the day.
This afternoon Frank (with wife Pat) came and cut our hair for us again. John was feeling pretty good at that point. In the early evening he had a few hours when the suction machine was going and there was about 200 CC of liquid in it when I emptied it. But for the first time in three nights he did not need to take the suction machine to bed with him. However, so far he has not settled down and gone to sleep - oops there goes his bell again.
One thumbs up for today.

Wednesday, February 16, 2011

John had a bad night last night - hips and back were very sore which meant that I had to turn him a number of times in the night and move him out to the sofa by 6am. He also needed extra meds. So it was a very disturbed night. My back was sore today because of the number of times I had to roll him and move him during the night.

Today was a repeat of the last few days - the phlegm and saliva being the biggest problem for John.

No word yet on the bed and mattress - called the Diocesan office and they are checking with the extended medical but so far no results.

One thumbs down for today

Tuesday, February 15, 2011

Golly this month is going fast too.
 Very similar to the last few days and nights, except John seemed to be more congested and more rigid tonight than previously. He took the suction machine to bed with him and it is still running and the sleeping meds have not put him to sleep so far. It is getting more and more difficult to move him, even with the lift, because his legs often will not bend enough to get him standing up.
This was my respite day and I spent it helping out in the office at Gateway. Went for lunch and then worked with Margie who had some financial reports to do that she did not know how to get from the financial program.I think we now have reports on reports!! But she should be able to give staff whatever info they want to have.
Went to Curves tonight so I have been a busy girl today.
This is a picture of the beautiful Amaryllis that is currently blooming in our bedroom window. Beside it is a white Christmas cactrus that is also coming into bud.

Two thumbs down for today because tonight has been, and still is, so difficult.

Monday, February 14, 2011

Happy Valentines Day everyone.
John's night last night and day today were very much like yesterday.
Margie, Gilmara (a former Brazilian Gateway student, now on staff there) and I went out for supper together. Then we came back and had dessert and coffee at the apartment. Enjoyed fruit dipped in chocolate fondue - yum.

But still have to make it one thumbs down for John for today.

Sunday, February 13, 2011

Well, the night was pretty good - just had to roll John twice. He did not feel too well in the morning. He asked for some ice vream just before I left for church but apparently never ate it. He spent most of the day with the suction machine running and had about 400CC of liquid in it by tonight.
Margie dropped by and brought me a beautiful bouquet of red carnations and white mums from St Simon's. She also had some valentine chocolates for me from a friend who was at the W2 party last night (I did not get to go to it as I could not arrange for someone to stay with John).
One thumbs down for today.

Saturday, February 12, 2011

John slept all of last night - except for asking to be rolled over one time. This morning he did not even remember that. He had a fairly good morning and afternoon but from about 4 pm to 8pm it was pretty rough. Then he seemed to do better and was pretty good by bedtime. He was asleep very quickly tonight.

But one thumbs down because of the rough patch.

Friday, February 11, 2011

John did not sleep at all last night. When I was ready for bed, he called me in and was bright eyed and alert and said he wanted some ice cream. I knew then we were in for a bad night because the sleeping pills have usually knocked him out by that time. It was a long night - or a short one, depending on how you look at it.
But today he had the best day he has had in a long time. Very little problem with meds clicking in or the saliva in the mouth and the coughing and choking. Only a very small amount in the suction machine tonight.
I had to give him two extra sets of meds during the night - did that make the difference? I don't know. He got his hair washed and was not wacked out when we were done.
The support worker who was here tonight thinks he is putting on some weight as well. I am trying to increase the number of feedings each day - So maybe.

A one thumbs up for today.

Thursday, February, 10 2011

Today was much like yesterday and the day before. No bad "crashes" but a lot of saliva and coughing and congestion. It is caused by the meds not working as they should, not from an infection on his chest.
I was checking the stats on the blog yesterday and came across this interesting stat : Places and no. of times the blog has been viewed
Canada 4,411
United States 554
Thailand 86
Malaysia 50
United Kingdom 39
Russia 15
Argentina 13
Morocco 12
Germany 11
Japan 9
I know that that is not all because John Jr checks it in China and that is not even listed.
But isn't it wonderful to have friends and prayer supporters all around the world!!

I used to visit women in prison twice a month with an organization called M2W2. I have not been able to do that since John became so ill. However, they are having a party on Saturday night and I have been invited to attend. I would love to go but have to find someone to stay with John. Gus is still sick with shingles. I called my case worker but she is out of her office until Friday and I doubt there will be time to arrange for a support worker to come on that short a notice. So I am making it a matter of prayer and we will see what happens.

Have to make it another one thumbs down day.

Wednesday, February 9, 2011

The days and nights are much the same lately. John had a fairly good night - only needed to be rolled once. Had a poor morning and somewhat better afternoon. The suction machine has not run quite as much today. There is only about 100 CC of liquid collected today.
I had a quiet day and spent most of it just relaxing and getting caught up on a bit of sleep.

But not a good day - One thumbs down for today.

Tuesday, February 8, 2011

John slept through the night last night. However he has had a difficult day today. The suction machine has run almost the entire day. There is at least 400 CC if mucous or saliva in the collection container.
It was my day for 4 hours of respite and I got lots done - went to 8 different stores for various things - but I was really tired by the time I got home. Not exactly relaxing! However, when I told Margie I was too tired to go to Curves tonight she came down and sat with John so I could lay down and rest. I felt muc better afterwards.

One thumbs down for today.

Sunday, February 6, 2011

John had a better night - just needed to be turned once. But he felt pretty good when he woke up this morning and has done well all day. His only discomfort has been the excess saliva and he has had the suction machine going all evening. It seems to deal with the problem fairly well -although it means a very loud TV so he can hear it over the machine.
The support worker staying with John while I go to church seems to be settling in very nicely.
So one thumbs up for today.

Saturday, February 5, 2011

John had a bad night but I could almost say read yesterday's blog and it would be the same for today - except that he started to feel better earlier today. He felt well enought for the 12:30pm support worker to be able to wash his har for him (which requires standing at the kitchen sink).
In the afternoon he was well enough for me to slip out with Margie to Tim Horton's for a coffee and muffin.
Margie then sat with John while I lay down and had a nap as I did not get much sleep last night.
Then we had supper and watched two installments of Downton, an English series that John had taped.
John's cousin, Wendy Dezan,  called to say Hi - Wendy is the International Director of Rainbow's of Hope, WEC's ministry to children in crisis around the world, so is a very busy lady. It was great to hear her voice and talk with her. John was able to talk to her a little bit. She reads this blog so is up to date on things here.

So two thunbs down for last night and this morning but one thumbs up for the afternoon and evening.

Friday, February 4, 2011

John slept the whole night through last night but had a terrible morning and early afternoon. The meds were not working much at all and he was feeling pretty rotten. About half was through the afternoon he said he was starting to feel better and eventually got up and sat in his chair to watch TV. The rest of the afternoon and evening went fairly well, and he was in good shape when we put him to bed tonight.
Still no response on the mattress and bed - checked the extended medical web site today and they are listed as decision pending. At least I know they got them!!Apparently they did not receive last months medical receipts that I sent in so I had to fax copies of those today. Since it was a huge bill, I am hoping they will reimburse us soon.
So I think two thumbs down for the first part of the day but one thumbs up for the rest.

Thursday, February, 3 2011

I am really happy to report that John had a much better day today. The meds have worked well - there has been no problem with excess saliva or mucous. In fact he has had quite a comfortable day.

Not much else to report

Two thumbs up.

Wednesday, February 2, 2011

Last night went fairly well, John only needed to be rolled once in the night. He was in pretty good shape in the morning and not feeling too badly. As the day wore on the problems with saliva in his mouth really began to bother him so that he had the suction machine running for much of the afternoon and evening. A good thing except it is noisy, meaning he has to turn the TV up really loud to hear it over the machine. I hope the upstairs neighbours are not too disturned by it all. 
Otherwise, he had did not have a bad day.
One thumbs up for today.

Tuesday, February 1, 2011

Today was a bright and sunny day. John slept through all of last night and had a much better day today.
This was my day for 4 hours of respite care. I was able to get out and get a number of things done - although the 4 hours sure went quickly and I did not do all I had hoped to do-but enough. And tonight Margie and I went to Curves as well. So it has been a pretty good day all told. PTL.

One thumbs up