Tuesday, June 15, 2010

John did not have a good night - not just ice cream at 3am - but awake at 6am needing meds. This does not usually happen. The rest of the day went quite well. He was able to go to the massage therapist, get his glasses adjusted and look for a suit at Value Village for the wedding (did not find one). Then when we got home I thought he would be exhausted but as we got his coat off he said, "can we go to the exercise room?" So we went down and he walked for a few minutes on the tread mill. Not as long as yesterday, but the walk there and back is actually quite far so he got a good work out. I was amazed that he could do all that.
Then, tonight, the meds did not kick in and he had a bad evening. Everything had been given to him right on time so I do not know why the crash. So while there were some encouraging moments today, there were also discouraging ones too.
Let's make it one thumbs up and one down.
Prayer requests:
- that John will sleep through the night
- that the meds will continue to hold for the full one and a half hours before then next ones
- that his strength will continue to increase and he will be able to do more little things each day
- that we will find a suit for the wedding
- I have a very sore shoulder and thumb - (I think both are a result of the constant repetition of pushing the syringe for the feeding and meds) and that the Lord will heal them quickly

Monday, June 14, 2010

After a little trouble in the morning, John had a good day the rest of the day. With the meds working better he is starting to feel like trying to do some things. Today we walked down to the exercise room in our condo and he walked on a tread mill for a few minutes. The fact that he not only felt like doing something like that but also that he actually accomplished it, is very encouraging.
However, the other side-effects are still hard for him to handle, especially the copious quantities of bitter saliva he has to deal with.
But, this would have to qualify as a two thumbs up day.
Prayer requests:
- see yesterday.

Sunday, June 13, 2010

John had another good day in terms of the meds holding throughout the day. No rough spots although he did not feel up to trying to go to church - maybe next week. 
However, the result of giving him the meds closer together is that he is getting more of them - and they do have side-effects and so now he is having to deal with those. Most notably the bitter tasting saliva in his mouth has increased, and he is having what I can only describe as "hot flashes".
Although better than the complications of the meds not working, this still makes daily living difficult for him.
Would still give it a one thumbs up day.
Prayer requests:
- For the side-effects of the drugs to lessen
- The valve on the feeding tube has broken - that I will be able to get a new part and fix it tomorrow.
- That I will be able to find the time to get over to Gateway and help out in the office with some work that I am needed for - this is hard to do on a 45 min schedule!!

Saturday, June 12, 2010

John had a really good day today - the best in a long time. Not a single severe "crash" because the meds did not kick in. Tonight he and Margie and I went to the movies and saw "Marmaduke". Well the movie might not have been a highlight but getting him out really was.
Having said that, I also had to realize that it was much more difficult to accomplish this small outing than just a few months ago. Giving him his 8pm meds via tube in the middle of the movie was quite a feat - and he needed me on one side of him and Margie on the other to make it in and out of the theatre. It was quite exhausting for him. If we do it again we really need to take his walker or a wheel chair.
But it certainly was a two thumbs up day!
Prayer requests:
- that the meds will continue to work on this schedule
- that he will be able to enjoy more outings and that his strength will increase as the activity increases
- that he will sleep though the night (he was wanting ice cream at 3am last night)
- that he will feel well enough to go to church in the morning

Friday, June 11, 2010

Well... not the day I had hoped for.
The increase in the meds did not seem to help for much of the day. John did try to go to speech therapy this afternoon, but we were only on the road for 10 minutes (it's an hours drive away) when he said - 'pull over - please take me home, I can't do this, I am feeling awful". He continued to feel awful for most of the afternoon. Fortunately the therapist is very understanding - we'll try again next Friday.
When I see him so fragile, I begin to wonder at the wisdom of flying to Ontario July 2nd - but he is determined not to miss his daughter's wedding!!
This evening he seems to be doing better.
One thumbs down for today.
Prayer requests;
- for John's system to absorb and use the meds better
- for John to sleep through the night - last night was bad
- for encouragement for John through all the disappointments
- for us to finally get to the speech therapist next week

Thursday, June 10, 2010

Not a bad day today. I have shortened the time between meds and feeding to 45 min. and it seems to be working better. It means he is getting meds every hour and a half - since we started out at every three hours this is half the time it should be. It seems to be working but still not too close to the protein feedings. I hope so. I will try it for a few more days and see what happens. So far I have seen absolutely not signs of the dyskinesia or low blood pressue which are the complications of too much meds. I do think the more meds he gets the more saliva and mouth sensations he gets but we cannot do a lot about that at this time. Just keeping him "on" with the meds is my current goal.
The difficulty with this approach is having to be on a 45 min. schedule - I thought every hour was bad but this is much worse. Hard to remember each time but I am sure we will get used to it after awhile. If I can just remember to turn that timer on again every time it rings!!!!
We had to cancel the speech therapy last week as John was having such a bad day, so we will try and go to Surrey hospital tomorrow for that. Appointment is for 2pm.
I would have to say this was a one thumbs up day - PTL.
Prayer requests:
- for John to sleep through the whole night
- for the speech therapist to be able to help him in that area
- for the meds to work better
- for Bev to be able to stay on schedule and get the shopping and other things done as well.

Wednesday June 9,2010

The last few days have all been similar - each hour like riding on a roller coaster with it's ups and downs. John will feel OK for about an hour and then the meds give out and all the distress begins. He lays down and suffers through and in 15 minutes I can give him the next lot of meds and in 20 - 30 minutes after that he feels OK and gets up and watches TV or listens to music for the next hour and then we begin again.
I am trying to work the meds up a little closer together but because of the conflict with the protein in his feed I have to be careful or the meds will not work at all.
I am not sure what rating to give it - maybe no thumbs today