Hello all,
Sorry to say that today also will be a write off as far as getting up and taking part in any programs.
The Doctor felt that we should move more slowly with the transition of the feeding tube so our swim was cancelled this morning and now the rest of the Physio and such will not take place, bummer cause I can tell when Chris gets frustrated and wants to move. But to be safe on the side of caution and give the new tube a chance to get set in place and for Chris to deal with the change in feeding, we will just remain in bed with no activity today.
So, not allot to tell for the end of the week.
We will start fresh next week.
Bye for now,
Kevin
Friday, October 23, 2009
Friday Morning
Good morning everyone,
We had quite the trip to the Red Deer Hospital, even with the best laid plans things seem to always get messed up somehow. We had a good trip down to the hospital and arrived with high expectations only to find the plans that had been made were not in place at this end. We did get a new feeding tube put in, a different kind of feeding tube. It works a little different than the one he had in place but I won't get into details. We are trying it and hopefully Chris will tolerate the change and we will then be moving a step closer to our goal.
Ambulance service down was great no surprises, half hour trip to Red Deer in and ready to go.
But when we were ready to go we had to wait 2 1/2 hours for the transfer ambulance to arrive.
I gave the crew instructions on Chris for positioning, keeping him seated and upright, as well as his coughing spells and it was nothing to be alarmed about. Told them he just needed to sit up and cough it out, at this point one attendant asked if any nurses going to ride with them.
I explained that this would be the fourth trip with their service it only lasted a half hour and it was no big deal. As we turned to leave he proceeded to drop the bed leaving Chris in a flat position I quickly reminded him about keeping him seated.
Helped them out to the ambulance then went to get in the car to follow as I pulled around they had already left. By the time I got about halfway back to Ponoka I received a phone call which seemed to be very confusing. The ambulance had been turned back and ended up at the emergency department in Red Deer. So I turned around and headed back to Red Deer to the emergency department wondering what could be the problem. Just prior to arriving back at the hospital I received another phone call to tell me that the ambulance was on its way back to Ponoka with Christopher. I turned around and headed to Ponoka arriving back at four o'clock in the afternoon only to find no Christopher or ambulance when I got there.
Went down the hall looking for them and down the hallway came the stretcher from the ambulance with Chris tipping over the edge with arm and head hanging down.
I asked them if they headed to Edmonton in the three hours since they left Red Deer.
I was told that Christopher was gagging and choking and the same fellow that I talked to at the hospital decided that they needed to go to emergency that he couldn't handle it. I asked the same attendant why Christopher was hanging over the edge of the stretcher with his head hanging down to the side and red in the face. He proceeded to tell me that that's the way he wanted to sit that he in fact tried to straighten his head but he just wanted to put it back off the bed and let it hang over the edge. I so wanted to take that attendant and twist him around the end of the bed to see if that's how he liked to stand,
I can't even begin to tell the stupidity of this whole trip and at this ambulance crew.
All in all it was a 7 1/2 hour trip for a 15 minute procedure and a completely exhausting day. Once Chris was comfortable he seemed to fall asleep right away and was tolerating the new tube and feed well into the evening. I will see how overnight went this morning, and if all was well during the night we will be heading to the pool at 930.
I will update later and hopefully I will have all kinds of good things to tell from today.
Thanks for checking in,
We had quite the trip to the Red Deer Hospital, even with the best laid plans things seem to always get messed up somehow. We had a good trip down to the hospital and arrived with high expectations only to find the plans that had been made were not in place at this end. We did get a new feeding tube put in, a different kind of feeding tube. It works a little different than the one he had in place but I won't get into details. We are trying it and hopefully Chris will tolerate the change and we will then be moving a step closer to our goal.
Ambulance service down was great no surprises, half hour trip to Red Deer in and ready to go.
But when we were ready to go we had to wait 2 1/2 hours for the transfer ambulance to arrive.
I gave the crew instructions on Chris for positioning, keeping him seated and upright, as well as his coughing spells and it was nothing to be alarmed about. Told them he just needed to sit up and cough it out, at this point one attendant asked if any nurses going to ride with them.
I explained that this would be the fourth trip with their service it only lasted a half hour and it was no big deal. As we turned to leave he proceeded to drop the bed leaving Chris in a flat position I quickly reminded him about keeping him seated.
Helped them out to the ambulance then went to get in the car to follow as I pulled around they had already left. By the time I got about halfway back to Ponoka I received a phone call which seemed to be very confusing. The ambulance had been turned back and ended up at the emergency department in Red Deer. So I turned around and headed back to Red Deer to the emergency department wondering what could be the problem. Just prior to arriving back at the hospital I received another phone call to tell me that the ambulance was on its way back to Ponoka with Christopher. I turned around and headed to Ponoka arriving back at four o'clock in the afternoon only to find no Christopher or ambulance when I got there.
Went down the hall looking for them and down the hallway came the stretcher from the ambulance with Chris tipping over the edge with arm and head hanging down.
I asked them if they headed to Edmonton in the three hours since they left Red Deer.
I was told that Christopher was gagging and choking and the same fellow that I talked to at the hospital decided that they needed to go to emergency that he couldn't handle it. I asked the same attendant why Christopher was hanging over the edge of the stretcher with his head hanging down to the side and red in the face. He proceeded to tell me that that's the way he wanted to sit that he in fact tried to straighten his head but he just wanted to put it back off the bed and let it hang over the edge. I so wanted to take that attendant and twist him around the end of the bed to see if that's how he liked to stand,
I can't even begin to tell the stupidity of this whole trip and at this ambulance crew.
All in all it was a 7 1/2 hour trip for a 15 minute procedure and a completely exhausting day. Once Chris was comfortable he seemed to fall asleep right away and was tolerating the new tube and feed well into the evening. I will see how overnight went this morning, and if all was well during the night we will be heading to the pool at 930.
I will update later and hopefully I will have all kinds of good things to tell from today.
Thanks for checking in,
Kevin
Wednesday, October 21, 2009
Trying to keep up!!
Hey Everyone,
Short update, Chris has had a very good Monday and Tuesday being alert and bright during his Physio sessions. Tuesday his stomach tube was sticking shut not allowing food or meds to travel through, it has opened enough to get today's in and he is scheduled to go to Red Deer tomorrow (Thursday) to have it replaced with a larger one that will be easier to upkeep and more flexible in its use.
It will be an extremely early day and a long day for the trip to Red Deer and the wait in the out patient clinic to get it replaced. I will travel with him there and back and will update how the procedure goes when we get back.
Been working with the physio therapist and the OT as they have brought in one of the equipment suppliers to help in tweaking Chris's equipment to make his sessions more productive.
Chris was extremely tired today and slept most of it away. Little more congestion this week as we have had a couple less pool times this week and will miss tomorrow's as well because we will be in Red Deer.
Update more tomorrow,
Kevin
Short update, Chris has had a very good Monday and Tuesday being alert and bright during his Physio sessions. Tuesday his stomach tube was sticking shut not allowing food or meds to travel through, it has opened enough to get today's in and he is scheduled to go to Red Deer tomorrow (Thursday) to have it replaced with a larger one that will be easier to upkeep and more flexible in its use.
It will be an extremely early day and a long day for the trip to Red Deer and the wait in the out patient clinic to get it replaced. I will travel with him there and back and will update how the procedure goes when we get back.
Been working with the physio therapist and the OT as they have brought in one of the equipment suppliers to help in tweaking Chris's equipment to make his sessions more productive.
Chris was extremely tired today and slept most of it away. Little more congestion this week as we have had a couple less pool times this week and will miss tomorrow's as well because we will be in Red Deer.
Update more tomorrow,
Kevin
Thursday, October 15, 2009
Weekend Update
Chris has been doing great the last few days, today pretty tired but still gave his all.
The bike issue will be resolved with them bringing a new one in the way it should have been in the first place.
The speech therapist is back from holidays and very excited to hear of the changes in Chris she will again start working with him tomorrow in conjunction with other therapists.
OT has built a sling of sorts to give Chris the ability to move his arm unrestricted and improve his movement. Got a feeling there is lots more good news on the way stay tuned. This is so exciting to hear after a long, long, long walk down this road. Every minute has been worth it.
Thank All so much for making the fund raiser such a success.
Eternally grateful,
Kevin
PS will post some new pictures shortly.
The bike issue will be resolved with them bringing a new one in the way it should have been in the first place.
The speech therapist is back from holidays and very excited to hear of the changes in Chris she will again start working with him tomorrow in conjunction with other therapists.
OT has built a sling of sorts to give Chris the ability to move his arm unrestricted and improve his movement. Got a feeling there is lots more good news on the way stay tuned. This is so exciting to hear after a long, long, long walk down this road. Every minute has been worth it.
Thank All so much for making the fund raiser such a success.
Eternally grateful,
Kevin
PS will post some new pictures shortly.
Mid-October
Hello everyone,
The fundraiser went well approx 225-260 attended, thank you so much to all who could attend. For all who could not attend, we appreciate the support and well wishes.
I have to also thank all of Chris's friends and family who gave their time and allot of work to make it all possible and such a success.
Chris is doing well we are trying to keep the cold bug away as some others here are coming down with colds. His bike finally arrived on Wednesday with missing pieces and support pieces of wrong size. We are awaiting call back from the importer as to what will be done.
He can continue to use it while we sort out the details.
Chris and I sat in recliners to watch the hockey game last night must have been tired as he fell asleep at the end of the second period. Bet he would love to be playing!
Back in the pool first thing in the morning, good wake up call as well as relaxing start to the day.
Again a heart felt "Thank you" to all of you.
Kevin
The fundraiser went well approx 225-260 attended, thank you so much to all who could attend. For all who could not attend, we appreciate the support and well wishes.
I have to also thank all of Chris's friends and family who gave their time and allot of work to make it all possible and such a success.
Chris is doing well we are trying to keep the cold bug away as some others here are coming down with colds. His bike finally arrived on Wednesday with missing pieces and support pieces of wrong size. We are awaiting call back from the importer as to what will be done.
He can continue to use it while we sort out the details.
Chris and I sat in recliners to watch the hockey game last night must have been tired as he fell asleep at the end of the second period. Bet he would love to be playing!
Back in the pool first thing in the morning, good wake up call as well as relaxing start to the day.
Again a heart felt "Thank you" to all of you.
Kevin
Thursday, October 8, 2009
Pre fund raiser update
Hello everyone,
We are now entering the second part of the week and things are moving ahead extremely well all of the therapies taking hold and working out perfectly, Chris's new bike has arrived from Germany and will be delivered on Friday morning.
Heather Chris's physiotherapist has been working unrelentingly with Christopher and all of the benefits are starting to show not only is his recognition of the yes and no signs showing great progress but also recognition of the words placed in front of him.
I can't help but get him to kick the ball every time we are doing stretches it is so exciting to see, the physiotherapist is finding new ways to work out and to get Chris to react. It is exciting to see and the other therapists are getting excited as well and looking for new things.
They are now working on a system to relieve the weight of Chris's arm so that he can move and react quicker with his responses, it is an awesome time and has also been a long time. It also shows beyond doubt that work, work and more work does work.
I have told Chris about the fundraiser being held on Saturday and see the immediate reaction in his face I know he would love to be there but we are going to continue to make progress here every minute that we are allowed, you won't find us wasting a minute of this, especially knowing how precious every minute of rehab is.
The physiotherapist was so excited with Chris's ability to answer and be consistent that she asked one of the fellows from psychology to come down and watch and every question that was presented to Chris he was able to answer, remember these answers are not spontaneous it takes time for Chris to work out his responses and that's what's so special about what is going on right now is that the people working with him are willing to wait for those responses and see the differences happening.
Not too much is going on in the house finding it is proving to be very difficult but the search continues and it will happen.
This morning's swim was slow Chris was tired today as we had stayed up late watching the Canucks game last night.
Another full day tomorrow and Friday so bye for now.
Thank you all,
Kevin
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