Dad really seems to be getting down in the dumps. He voiced to Martha yesterday that he was depressed and really quite frankly tired of fighting. He thought he would be better than he is by now. I know that when I have been there, I have set goals for him with the respiratory staff and I am unsure if they are following through. 3 weeks ago, we set a goal to deflate his cuff every day and to try to get him to use his vocal cords so he was able to tell Scott happy birthday tomorrow. I don't think they have done that. They haven't done that during the week when Martha has been there, and they haven't done it over the weekends when Scott was there. Maybe we need to have a meeting with the staff to set some goals that will be followed through on.
I have also noticed that when I have been there, they have ventilator patients out in the common areas to watch tv or watch the activities that are going on. They haven't brought dad out for any of this. I tend to think that maybe its because if his Aspergillus, but I am unsure of that. I think it would help him get out and watch something other than the TV or the back of his eyelids.
The doctor was in yesterday and removed the trach that RML had put in and I guess it came out like butter. Made the RT staff look stupid. Didn't hurt him at all and he rested comfortably throughout the day.
I really hope he isn't giving up. We have come to far for him to give up now. Him making it home would be an absolute miracle, but getting him off the vent and giving him a better quality of life, I'm sure we can strive for...and to get him back to Des Moines.
Wednesday, September 30, 2009
Wednesday, September 23, 2009
Sept. 23rd
Dad has been very stable the past week or so. He has been sleeping a lot, but they have not been suctioning anything out of his lungs. I don't know if they have been working on him speaking or not. Martha is there now and he is sleeping. He told her he wasn't doing very good, but she thinks he looks fine.
He still lights up when he gets cards and letters from people and anyone is welcome to take a drive to see him if they want to.
Scott was there Sunday for a bit and he wanted to watch a movie, but he couldn't stay awake for it all. I think he gets bored really easily.
We have a family wedding this weekend, so no one is going to be there. Martha is leaving in the morning tomorrow so I will post up any information as it changes.
He still lights up when he gets cards and letters from people and anyone is welcome to take a drive to see him if they want to.
Scott was there Sunday for a bit and he wanted to watch a movie, but he couldn't stay awake for it all. I think he gets bored really easily.
We have a family wedding this weekend, so no one is going to be there. Martha is leaving in the morning tomorrow so I will post up any information as it changes.
Sunday, September 13, 2009
Hi Everyone!!
I am so sorry that no one has written. Scott was up there last weekend. I reminded him a few times to write, but he was pretty busy at work and then must have forgotten by the time he got home with a 3 year old and all. Martha was up there during the week, but I hadn't really talked to her that much other than the same "no changes really conversation." Debbie was there and his friend Bob Beal drove up from Missouri to see him. (Oh Debbie, you will be happy to know that the nurse told Bob that he just missed dad's daughter...which was you.)
Coleman and I went up there today. He was asleep most of the day, but when he woke up, I had the RT deflate his cuff to see if we could get him to talk. The good thing is, they decided to turn his feeding tube off for two hours a day now, and 15 minutes before any sort of turn or re-adjustment. Since they have done that, every day following they are suctioning less and less stuff up. YEAH!!!!
Anyway, back to the cuff...Once it was deflated, he coughed pretty good for about 5 minutes and then he was fine. His oxygen sats stayed up and his heart rate was good. Then we tried to get him to talk. He really tried, but we just aren't getting his voice to come out yet. He is whispering and actually passing air, so its easier to understand him. We had to keep reminding him to whisper with air instead of just moving his lips. He doesn't quite have the strength yet to get enough push behind his cords to make noise.
Words we worked on though were, Jordan, shut up, beer, rare-bit burger, hi, and ribs. I tried to get him to inhale real deep and then try to push out HA! We tried Ma too. He even tried to hum. This lasted for about an hour and then he really couldn't tolerate it anymore, so we stopped. The RT says she will put in his chart for them to try that every day at least once, if not twice since seeing how well he actually did.
I caught a glimpse of his heel sore. It is all necrotic underneath now and we really can't figure out what the hell is causing it. I know it doesn't take a lot, but nothing has changed. It is so frustrating. It is also frustrating that no place in Oelwein serves pepperoni pizza, but that's another story. :)
He actually requested the TV off and no radio and wanted me to read to him. I left the book there that I was reading about the neuroanatomist who suffered a stroke, so I started reading it. I got through 3 chapters before he fell asleep. he really liked it. So, the next person who goes up and wants to read to him, start at Chapter 4.
He was happy that Bob drove up to see him. He shook his head yes when I asked him if it was nice to see someone else other than our boring faces. I really think he just likes knowing that someone is there with him, even if he is sleeping.
He seems pleased that I am carrying on his photography. He really perks up when I talk about it. I had a friend commend me on some of the seniors that I have shot recently and as usual, I am hard on myself and don't take compliments well. He sent me a link to this video on youtube that was awesome and actually made me tear up. If anyone feels like watching it, here is the link:
http://www.youtube.com/watch?v=KZYlQ4Wv8lE
About 7 minutes into it, you will see what really hit me like a ton of bricks.
He still has the same trach tube in his throat as he had in Chicago. They RT has mentioned to me a few times that they don't use that kind there and she was confused why they ever even used it because it is more of an ICU trach. I thought they had removed it already, hell I can't tell the difference, but I was told today that they have tried 3 times to get it out and they can't. The kind that is in there, after awhile, the tissue in the throat starts to kind of adhere to the cuff. The RT said today that basically, you have to rip it out and it can cause pretty bad bleeding, so the doctor is going to have to do it when he comes in the last Tuesday of the month. That sounds pretty disturbing....I might have to go up there that day.
The next few weekends are pretty booked. Scotts wife's birthday, I have some shoots, our cousins wedding and then my brothers birthday. If anyone wants to take a little road trip to see him any of the next 3 weekends, that would be fantastic!!! If you do, shoot me a message and I can tell you how to get there and all that good stuff. :)
Coleman and I went up there today. He was asleep most of the day, but when he woke up, I had the RT deflate his cuff to see if we could get him to talk. The good thing is, they decided to turn his feeding tube off for two hours a day now, and 15 minutes before any sort of turn or re-adjustment. Since they have done that, every day following they are suctioning less and less stuff up. YEAH!!!!
Anyway, back to the cuff...Once it was deflated, he coughed pretty good for about 5 minutes and then he was fine. His oxygen sats stayed up and his heart rate was good. Then we tried to get him to talk. He really tried, but we just aren't getting his voice to come out yet. He is whispering and actually passing air, so its easier to understand him. We had to keep reminding him to whisper with air instead of just moving his lips. He doesn't quite have the strength yet to get enough push behind his cords to make noise.
Words we worked on though were, Jordan, shut up, beer, rare-bit burger, hi, and ribs. I tried to get him to inhale real deep and then try to push out HA! We tried Ma too. He even tried to hum. This lasted for about an hour and then he really couldn't tolerate it anymore, so we stopped. The RT says she will put in his chart for them to try that every day at least once, if not twice since seeing how well he actually did.
I caught a glimpse of his heel sore. It is all necrotic underneath now and we really can't figure out what the hell is causing it. I know it doesn't take a lot, but nothing has changed. It is so frustrating. It is also frustrating that no place in Oelwein serves pepperoni pizza, but that's another story. :)
He actually requested the TV off and no radio and wanted me to read to him. I left the book there that I was reading about the neuroanatomist who suffered a stroke, so I started reading it. I got through 3 chapters before he fell asleep. he really liked it. So, the next person who goes up and wants to read to him, start at Chapter 4.
He was happy that Bob drove up to see him. He shook his head yes when I asked him if it was nice to see someone else other than our boring faces. I really think he just likes knowing that someone is there with him, even if he is sleeping.
He seems pleased that I am carrying on his photography. He really perks up when I talk about it. I had a friend commend me on some of the seniors that I have shot recently and as usual, I am hard on myself and don't take compliments well. He sent me a link to this video on youtube that was awesome and actually made me tear up. If anyone feels like watching it, here is the link:
http://www.youtube.com/watch?v=KZYlQ4Wv8lE
About 7 minutes into it, you will see what really hit me like a ton of bricks.
He still has the same trach tube in his throat as he had in Chicago. They RT has mentioned to me a few times that they don't use that kind there and she was confused why they ever even used it because it is more of an ICU trach. I thought they had removed it already, hell I can't tell the difference, but I was told today that they have tried 3 times to get it out and they can't. The kind that is in there, after awhile, the tissue in the throat starts to kind of adhere to the cuff. The RT said today that basically, you have to rip it out and it can cause pretty bad bleeding, so the doctor is going to have to do it when he comes in the last Tuesday of the month. That sounds pretty disturbing....I might have to go up there that day.
The next few weekends are pretty booked. Scotts wife's birthday, I have some shoots, our cousins wedding and then my brothers birthday. If anyone wants to take a little road trip to see him any of the next 3 weekends, that would be fantastic!!! If you do, shoot me a message and I can tell you how to get there and all that good stuff. :)
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