Tuesday, May 19, 2009
WE MOVED!!!!
Yup that's right we finally made it onto the next step of this craziness.
They started Cory on a different sleep med. last night and he said he was actually able to get some sleep. Unfortunately whenever they give him a new sleep med. it seems to work for about one night and then it doesn't work again for him. This morning Cory was able to get on the tilt table and in a chair both, for a total of about an hour. Sadly at about 11am he said he was already feeling like he over did it. PT really can wear him out if hes not careful. There is a very fine balance between pushing Cory enough so he gets stronger and pushing him too much and actually causing more damage.
It was also confirmed this morning that Cory does have another infection in his lungs and so he was started on another round of antibiotics.
Then at 11 am today the nurse came in and told us the the EMT was going to be there at noon to transport Cory to his new "pad". We had no idea that we were going to be going today so it was a little bit of a shock but I think it was good that Cory didn't have much time to work himself up about the actual move. So Cory experienced his first ambulance ride (no sirens of course) and I was sure to take lots of pictures (per Cory's request). It was a bitter sweet farewell to the people and hospital that we have been for the past 2 1/2 weeks we really know that we got the best care possible but, we also know that this move was what we need to do now. (as scary as it may be)
Cory said that he was really weirded out being transported. He feels like its a dream and when we got to the new place he was really emotional. We have heard that this disease can really affect your anxiety levels and it has for Cory. He gets stressed really easily and it takes a while and usually some meds. to calm him down when he gets too worked up.
So since we have moved to a new facility its not quite as strict so if you would like to visit Cory please e-mail me at corysvisitors@gmail.com and I will give you the information you need to come see him. Cory really would love to see people he just wanted me to let everyone know that because he still has his trech with the cuff inflated at the bottom he wont be able to talk to you or really communicate with you unless you are a master like me at reading his NO moving lips haha.
When I left Cory tonight he was resting but I know that the move today was really really hard on him so please continue to pray for Cory's peace of mind. Also Cory requested that people pray for a speedy recovery of his lungs so he can get off the trech. (he really hates it).
xoxo,
Chaney
They started Cory on a different sleep med. last night and he said he was actually able to get some sleep. Unfortunately whenever they give him a new sleep med. it seems to work for about one night and then it doesn't work again for him. This morning Cory was able to get on the tilt table and in a chair both, for a total of about an hour. Sadly at about 11am he said he was already feeling like he over did it. PT really can wear him out if hes not careful. There is a very fine balance between pushing Cory enough so he gets stronger and pushing him too much and actually causing more damage.
It was also confirmed this morning that Cory does have another infection in his lungs and so he was started on another round of antibiotics.
Then at 11 am today the nurse came in and told us the the EMT was going to be there at noon to transport Cory to his new "pad". We had no idea that we were going to be going today so it was a little bit of a shock but I think it was good that Cory didn't have much time to work himself up about the actual move. So Cory experienced his first ambulance ride (no sirens of course) and I was sure to take lots of pictures (per Cory's request). It was a bitter sweet farewell to the people and hospital that we have been for the past 2 1/2 weeks we really know that we got the best care possible but, we also know that this move was what we need to do now. (as scary as it may be)
Cory said that he was really weirded out being transported. He feels like its a dream and when we got to the new place he was really emotional. We have heard that this disease can really affect your anxiety levels and it has for Cory. He gets stressed really easily and it takes a while and usually some meds. to calm him down when he gets too worked up.
So since we have moved to a new facility its not quite as strict so if you would like to visit Cory please e-mail me at corysvisitors@gmail.com and I will give you the information you need to come see him. Cory really would love to see people he just wanted me to let everyone know that because he still has his trech with the cuff inflated at the bottom he wont be able to talk to you or really communicate with you unless you are a master like me at reading his NO moving lips haha.
When I left Cory tonight he was resting but I know that the move today was really really hard on him so please continue to pray for Cory's peace of mind. Also Cory requested that people pray for a speedy recovery of his lungs so he can get off the trech. (he really hates it).
xoxo,
Chaney
Monday, May 18, 2009
ho hum....
If its not one thing its another...
Well we found out that the new place that we are moving to has an open bed hurray right?...wrong
I swear its a new adventure every single day I arrive at the hospital because there is a whole 10 hrs. at night that I haven't been updated on. Soooo....I guess last night Cory was having a hard time digesting anything which they are telling me is no big deal except for the fact that he is also having a lot of gas building up in his tummy that he isn't being able to pass so it just sits in his stomach (causing a lot of pain) until they take the biggest syringe I have every seen and suck the gas out through his g-tube. I don't know about the rest of you but that seriously fascinated me for some reason.
Anyways, Cory also had another sleepless night and then for some reason (I forgot to ask why) they decided to draw some blood (since they already took out his pick line and his art. line in prep for transfer to the new facility they had to do it through a normal vein) and they found out that his white blood count is elevated AGAIN!!!! So they are doing some cultures and have decided to keep him in Critical Care until they can rule out the cause of a new infection.
If its not an infection they are thinking that the rise in white blood cells could be due to stress from yesterday trying to turn down the ventilator. I didn't know this but I guess they said that he was on vent trials yesterday and they said that he was breathing on his own for quite a while with very limited support. However he didn't do so well so they had him on heavy support again today.
He was up on the tilt table again today for about 15min so I am told...PT came a little early today so I missed it. And then in OT Cory brushed his own teeth...YEAH!!! He has been practicing his control in his arms and his right one is really starting to show some big improvement.
Cory wants me to come back to the hospital tonight to "train" a friend that is going to take a shift, how to take care of him. HAHA he is too funny for some reason he gets scared that people that haven't taken shifts wont know how to understand him or take care of him right. So I will be heading down to the hospital again tonight.
Well we found out that the new place that we are moving to has an open bed hurray right?...wrong
I swear its a new adventure every single day I arrive at the hospital because there is a whole 10 hrs. at night that I haven't been updated on. Soooo....I guess last night Cory was having a hard time digesting anything which they are telling me is no big deal except for the fact that he is also having a lot of gas building up in his tummy that he isn't being able to pass so it just sits in his stomach (causing a lot of pain) until they take the biggest syringe I have every seen and suck the gas out through his g-tube. I don't know about the rest of you but that seriously fascinated me for some reason.
Anyways, Cory also had another sleepless night and then for some reason (I forgot to ask why) they decided to draw some blood (since they already took out his pick line and his art. line in prep for transfer to the new facility they had to do it through a normal vein) and they found out that his white blood count is elevated AGAIN!!!! So they are doing some cultures and have decided to keep him in Critical Care until they can rule out the cause of a new infection.
If its not an infection they are thinking that the rise in white blood cells could be due to stress from yesterday trying to turn down the ventilator. I didn't know this but I guess they said that he was on vent trials yesterday and they said that he was breathing on his own for quite a while with very limited support. However he didn't do so well so they had him on heavy support again today.
He was up on the tilt table again today for about 15min so I am told...PT came a little early today so I missed it. And then in OT Cory brushed his own teeth...YEAH!!! He has been practicing his control in his arms and his right one is really starting to show some big improvement.
Cory wants me to come back to the hospital tonight to "train" a friend that is going to take a shift, how to take care of him. HAHA he is too funny for some reason he gets scared that people that haven't taken shifts wont know how to understand him or take care of him right. So I will be heading down to the hospital again tonight.
Sunday, May 17, 2009
tired
Cory was very tired today. He said (using our outstanding lip reading skills that we have developed) that he over did it in PT yesterday and his muscles are very sore today. I am noticing that as time is going on and, some of his feeling is coming back that he is very very sensitive to things. For example, he doesn't have much control of his arms (its getting better though) so yesterday after he lifted them up to try to touch his nose he was laying his arm back down on the pillow and his hand came down a little faster than he anticipated (which wasn't very fast to you or I) and he felt like he smacked his hand on the rail of the bed and it brought him to tears literally. I think that as his nerves come back and begin to heal that maybe for a while they will be sending the wrong, or different, signals to his brain. I dint know if that's totally true but another example of this is when I rub his feet at times he says it feels like they are on fire when I touch and other times it feels like shots of pain. But all in all touch = pain for Cory right now. With the exception of his head...he LOVES it when we rub his face with a wet wash cloth and scratch his head. He says that where he has the most feeling.
I am not sure why but Cory has been so HOT lately...o ya maybe because its like 110 degrees outside alreay. But ya, he is loving the fan (except for the fact that its drying out his eyes even with the millions of eye drops that I put in them). And, he is loving the ice pack behind his neck. But seriously he is really sweaty all the time, I think hes just trying to freeze me out.
We are still not moved to the new facility yet so hopefully tomorrow. Today, other than Cory just being tuckered out, not to much went on. His grandma from Utah was able to come down and see him. Also, Sundays bring lots of family and visitors so that always helps the days go by faster. I think Cory's favorite part of the day was when we brought the girls to see him. The one exciting part about moving to the new facility is that we will be way closer to home and its not as strict as the Critical Care unit, so more visitors will be welcomed and NEEDED!!! So hopefully Cory will be able to see his girlfriends (R & S) a lot more during the week.
I feel a little bad that I might not be seeing and recording as much progress as I should but when I am there all day everyday I guess I miss some of the little changes but everyone who comes in these days that haven't seen him for a week or so say that they are amazed at how much better he looks to them. (it could be that they aren't drugging him nearly as much as they were now that he is on the trake instead of being intubated down the back of his throat.) So that is encouraging to hear.
I am not sure why but Cory has been so HOT lately...o ya maybe because its like 110 degrees outside alreay. But ya, he is loving the fan (except for the fact that its drying out his eyes even with the millions of eye drops that I put in them). And, he is loving the ice pack behind his neck. But seriously he is really sweaty all the time, I think hes just trying to freeze me out.
We are still not moved to the new facility yet so hopefully tomorrow. Today, other than Cory just being tuckered out, not to much went on. His grandma from Utah was able to come down and see him. Also, Sundays bring lots of family and visitors so that always helps the days go by faster. I think Cory's favorite part of the day was when we brought the girls to see him. The one exciting part about moving to the new facility is that we will be way closer to home and its not as strict as the Critical Care unit, so more visitors will be welcomed and NEEDED!!! So hopefully Cory will be able to see his girlfriends (R & S) a lot more during the week.
I feel a little bad that I might not be seeing and recording as much progress as I should but when I am there all day everyday I guess I miss some of the little changes but everyone who comes in these days that haven't seen him for a week or so say that they are amazed at how much better he looks to them. (it could be that they aren't drugging him nearly as much as they were now that he is on the trake instead of being intubated down the back of his throat.) So that is encouraging to hear.
Saturday, May 16, 2009
Still Waiting
They gave our bed away...yup that's right the bed that we were supposed to get at the new facility was given away last night so we are still at the Mayo waiting for a bed to open up. We actually didn't even know that they gave the bed away until about 3pm. So poor Cory, who whenever we schedule something, had really got his hopes up and was all psyched to go and then they came in and told us the bad news.
From my stand point I am really happy actually because I was nervous to move him only after really 2 uphill days. So for me the fact that Cory will be under more watchful care for a few more days is GOOD NEWS!!!
As far as Cory's improvement I think we have hit the plateau. He really isn't having any significant changes in the past few days. He does still have the trake in and they are slightly lowering the levels to maybe start weening him off. Other than that no big NEWS per say to talk about. PT did get him back on the tilt table today and Cory loved it. He says its so good to be up and it makes his breathing a lot easier but he still only can tolerate about 15 mins max. His strength and control in his upper body is still there and not decreasing so that is still good.
That's about it for today. Hopefully tomorrow a bed will open up and we can start, for Cory's sake, moving on.
From my stand point I am really happy actually because I was nervous to move him only after really 2 uphill days. So for me the fact that Cory will be under more watchful care for a few more days is GOOD NEWS!!!
As far as Cory's improvement I think we have hit the plateau. He really isn't having any significant changes in the past few days. He does still have the trake in and they are slightly lowering the levels to maybe start weening him off. Other than that no big NEWS per say to talk about. PT did get him back on the tilt table today and Cory loved it. He says its so good to be up and it makes his breathing a lot easier but he still only can tolerate about 15 mins max. His strength and control in his upper body is still there and not decreasing so that is still good.
That's about it for today. Hopefully tomorrow a bed will open up and we can start, for Cory's sake, moving on.
Friday, May 15, 2009
ok day
So today was an ok day.
Cory as of this morning still had his feeding tube in his nose until the g-tube in his stomach reached the 24hr mark and was able to be used. So this morning as Cory was trying to exercise his arms he still doesn't have much control of them, he accidentally pulled out the nose feeding tube and so the had to put it back in. sad, but they said he did well.
Cory only got about 3 hrs of sleep so he was pretty tired today and wasn't as strong as he was yesterday. It probably didn't help that he wasn't able to start the tube feed back up, from yesterdays g-tube surgery, until today at 3pm.
Other than that there has not been any significant changes today. The lower left lung still looks like it has junk in it but they are sure that will heal. And his strength in his upper body is still there but not as strong as yesterday. Still not much going on in the lower half of his body.
However, the doctors said that they feel confident enough with his stable condition and improvements that he has shown that we have decided to move him to a new facility that accommodates respiratory patients along with rehab and physical therapy. We are a little scared and hesitant because we know that it will be a lot different than where we have been but, we want to be hopeful and positive so that we can get out of there quick and onto bigger and better things.
Please pray that Cory can get of his vent soon and that we can have peace of mind while transferring and staying at the new facility.
xoxo
chaney
Cory as of this morning still had his feeding tube in his nose until the g-tube in his stomach reached the 24hr mark and was able to be used. So this morning as Cory was trying to exercise his arms he still doesn't have much control of them, he accidentally pulled out the nose feeding tube and so the had to put it back in. sad, but they said he did well.
Cory only got about 3 hrs of sleep so he was pretty tired today and wasn't as strong as he was yesterday. It probably didn't help that he wasn't able to start the tube feed back up, from yesterdays g-tube surgery, until today at 3pm.
Other than that there has not been any significant changes today. The lower left lung still looks like it has junk in it but they are sure that will heal. And his strength in his upper body is still there but not as strong as yesterday. Still not much going on in the lower half of his body.
However, the doctors said that they feel confident enough with his stable condition and improvements that he has shown that we have decided to move him to a new facility that accommodates respiratory patients along with rehab and physical therapy. We are a little scared and hesitant because we know that it will be a lot different than where we have been but, we want to be hopeful and positive so that we can get out of there quick and onto bigger and better things.
Please pray that Cory can get of his vent soon and that we can have peace of mind while transferring and staying at the new facility.
xoxo
chaney
Thursday, May 14, 2009
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