I think I should change the name of this blog to I hate lung infections. Or, I hate steroids.
Martha just called and said that since Harmony House in Waterloo is full, we need to have a conference call with RML and some of the doctors on Monday. 2 doctors have now told Martha that he will never be off the vent and he will continue to get infections due to his compromised immune system because of his long term use of steroids. I don't know if I believe that entirely. He hasn't taken a steroid in months. How can steroids permanently ruin your immune system??
So, now they are talking about just moving him back to a nursing home in Des Moines. Well, I want more answers. I do NOT think that is is fair to dump him in a nursing home because Medicare doesn't reimburse for weaning programs so hardly anyone has one. I wouldn't even consider him a stable vent patient anyway, so what nursing home is going to want him? Why can't he sit tight where he is until Harmony House opens? Why? BECAUSE OF INSURANCE!!
So, basically we saved his life from the aneurysm, but now he is going to succumb to the system and probably die from some lung infection in a nursing home because no one is equiped to handle his condition. I myself have gotten to the point where I dont think RML can even handle him. They have made some poor choices and a lot of their staff is less than competent.
I am sorry if my upcoming word offends anyone, but FUCK!!!!!!!!!!!!!!!!
Wednesday, June 10, 2009
Monday, June 8, 2009
Monday
Dad did not want us to leave yesterday at all. He seemed pretty upset. We set Skype up on his laptop and he was able to see Scott and he was also able to see Zane play around in his crib. He enjoyed that. Now when Martha is there, we can video call him and we can see each other!
While we were doing that, the nurse came in and said that she wanted to give him a bath, I asked her to hold out a bit because we were just getting ready to leave. He shook his head no that he didn't want one, and I finally figured out that he was saying it hurts him. So, I asked if it just generally hurt or if they were being rough, he said it hurt. So, I asked if he wanted some pain meds before they bathe him and he said yes. That got me thinking to that morning when the nurse was drawing cultures on his arm, I was looking at his face and she wasn't and he was grimacing in pain and saying, OW! He is a hard stick anyway and she was digging pretty good, but she didn't go as long as she probably would have because I was standing there. So when we were getting ready to leave, I wrote a note and put it over his head so everyone can see that went something like this:
Dad cannot push his call light, so when you come in the room, please ask him if he needs anything before you leave. For example:
Do you want the TV on or off?
Do you want the radio on or off?
Are you hot or cold?
Are you comfortable?
Do you need anything for pain?
Dad has feeling in ALL of his limbs even though he can't move them. Please be mindful of that when you are doing blood draws since he can't yell or pull away.
He is very lucid 98% of the time, but I noticed a few times he didn't remember certain things, like having his head CT last week. He also didn't remember the therapist doing the talking valve with him on Saturday, but when we talked about it on Sunday, he remembered. He didn't know about Aunt Joan being sick either, but that may be because no one told him, and no one told me not to say anything. He wanted to know why he may be transferred to Waterloo, so I am not sure if anyone told him that, but I did. And he also said that he needed to get back to work at Wells Fargo, but I told them that they knew he was sick and that they wanted him to get better.
I felt awful leaving him and knowing he can't really communicate his needs to someone who rushes in and out of the room worries me if no family is there. Especially if they are hurting him. :(
While we were doing that, the nurse came in and said that she wanted to give him a bath, I asked her to hold out a bit because we were just getting ready to leave. He shook his head no that he didn't want one, and I finally figured out that he was saying it hurts him. So, I asked if it just generally hurt or if they were being rough, he said it hurt. So, I asked if he wanted some pain meds before they bathe him and he said yes. That got me thinking to that morning when the nurse was drawing cultures on his arm, I was looking at his face and she wasn't and he was grimacing in pain and saying, OW! He is a hard stick anyway and she was digging pretty good, but she didn't go as long as she probably would have because I was standing there. So when we were getting ready to leave, I wrote a note and put it over his head so everyone can see that went something like this:
Dad cannot push his call light, so when you come in the room, please ask him if he needs anything before you leave. For example:
Do you want the TV on or off?
Do you want the radio on or off?
Are you hot or cold?
Are you comfortable?
Do you need anything for pain?
Dad has feeling in ALL of his limbs even though he can't move them. Please be mindful of that when you are doing blood draws since he can't yell or pull away.
He is very lucid 98% of the time, but I noticed a few times he didn't remember certain things, like having his head CT last week. He also didn't remember the therapist doing the talking valve with him on Saturday, but when we talked about it on Sunday, he remembered. He didn't know about Aunt Joan being sick either, but that may be because no one told him, and no one told me not to say anything. He wanted to know why he may be transferred to Waterloo, so I am not sure if anyone told him that, but I did. And he also said that he needed to get back to work at Wells Fargo, but I told them that they knew he was sick and that they wanted him to get better.
I felt awful leaving him and knowing he can't really communicate his needs to someone who rushes in and out of the room worries me if no family is there. Especially if they are hurting him. :(
Sunday, June 7, 2009
Sunday
When we got here the nurse was drawing cultures and then XRay came in to do a chest image. He has a fever, so they are taking precautions. He says he feels okay, he is flushed though.
He is weaning and doing very well. He seems sleepy. I just played all the songs for him that we put together and he seemed to enjoy it. Now we are all just kind of hanging out quietly.
I found out last night he has been off of lasix for two weeks due to his electrolytes getting out of wack, but he really doesn't have a lot of fluid on him. I actually think that his temple looks weird now because he lost so much fluid in his face, and his cheeks are still a bit puffy. So that is giving the illusion that his head has sunken in.
We will be hitting the rode in a few hours here so I am going to go back and spend some more time with him.
He is weaning and doing very well. He seems sleepy. I just played all the songs for him that we put together and he seemed to enjoy it. Now we are all just kind of hanging out quietly.
I found out last night he has been off of lasix for two weeks due to his electrolytes getting out of wack, but he really doesn't have a lot of fluid on him. I actually think that his temple looks weird now because he lost so much fluid in his face, and his cheeks are still a bit puffy. So that is giving the illusion that his head has sunken in.
We will be hitting the rode in a few hours here so I am going to go back and spend some more time with him.
Saturday, June 6, 2009
Saturday
We just got here and they just put dad back on the ventilator about a half hour ago. He made it 48 hours!!! They put him back on due to his high HR and resps. He is really tired and sleeping now. He acknowledged us when we came in and shook his head yes when I asked if he was tired. We rented some movies so we will let him sleep for awhile.
I am kind of curious what will happen if he gets moved to Waterloo. It is very apparent to me that he seems to have great long term memory and if you ask the right questions, he can nod yes or no appropriately. However, he seems a bit forgetful and it may not be that severe. He didn't remember having the head CT or the speaking evaluation, but he knew how long he had been off the vent. He can look at you when you speak, but he doesn't seem to be able to look at the letter board we brought. He looks at it, but he cant make his eyes look directly at a letter that he wants and then he tends to look at the ceiling.
Do we need to wait until all of his infections have cleared up and get to the point where we can rehab him to then get to the point where they can evaluate his cognitive and physical ability? Can we bring someone in to do some type of testing now to give us some sort of a prognosis? I would hate for him to just become a victim of the system and have no one be proactive into making him better and just let him be because he is alive. Can his apparent deficits that he has now get better with work now, or risk not getting better because of lack of therapy? I am not sure who to even ask these questions to. Dr. Lopes has been great but I don't think he is his primary physician since he is a surgeon.
I don't want to get him to Waterloo until he us stable enough to be there and I would like him to go there and have a group of doctors who are willing to take on his care. Willing and ABLE. I don't think it will be healthy to keep dragging him back to Chicago to Rush because some doctor in Waterloo is afraid to touch him like what happened at Mercy in Des Moines. Dad's insurance no longer pays for ambulance transports anyway and a full paramedic transport to take him anywhere is a few grand.
Anyway, I should type all this up and have Martha go over a lot of questions I have with RML before he gets transported out. Going back to Iowa will certainly be easier on all of our pocketbooks, but I don't want him back yet if he really isn't ready. I hate insurance companies.
I am kind of curious what will happen if he gets moved to Waterloo. It is very apparent to me that he seems to have great long term memory and if you ask the right questions, he can nod yes or no appropriately. However, he seems a bit forgetful and it may not be that severe. He didn't remember having the head CT or the speaking evaluation, but he knew how long he had been off the vent. He can look at you when you speak, but he doesn't seem to be able to look at the letter board we brought. He looks at it, but he cant make his eyes look directly at a letter that he wants and then he tends to look at the ceiling.
Do we need to wait until all of his infections have cleared up and get to the point where we can rehab him to then get to the point where they can evaluate his cognitive and physical ability? Can we bring someone in to do some type of testing now to give us some sort of a prognosis? I would hate for him to just become a victim of the system and have no one be proactive into making him better and just let him be because he is alive. Can his apparent deficits that he has now get better with work now, or risk not getting better because of lack of therapy? I am not sure who to even ask these questions to. Dr. Lopes has been great but I don't think he is his primary physician since he is a surgeon.
I don't want to get him to Waterloo until he us stable enough to be there and I would like him to go there and have a group of doctors who are willing to take on his care. Willing and ABLE. I don't think it will be healthy to keep dragging him back to Chicago to Rush because some doctor in Waterloo is afraid to touch him like what happened at Mercy in Des Moines. Dad's insurance no longer pays for ambulance transports anyway and a full paramedic transport to take him anywhere is a few grand.
Anyway, I should type all this up and have Martha go over a lot of questions I have with RML before he gets transported out. Going back to Iowa will certainly be easier on all of our pocketbooks, but I don't want him back yet if he really isn't ready. I hate insurance companies.
Friday, June 5, 2009
YES!!!
We got to RML about 6 oclock today. Dad was very happy to see us and smiled when we came in. He has been weaning for 32 HOURS!!! He is still going strong. He is very alert and is responding to our questions. When I asked him how long he had been weaning, he mouthed "over 24." It took me a second to figure out what he said but he said it!! When I asked the respiratory therapist how long he had been off he said 32 hours!
I saw a note on the dry erase board that the therapist wrote on 6/1 :
Speaking valve eval ~10 minutes! I heard his voice! Will try again to increase time!
That is a good step! This means closer to being off the vent, closer to rehab and closer to talking. It will still be a long arduous process but he is getting there.
His right temple seems to be sunken in which looks odd. No one here seems to care but I mentioned it to Dr. Lopes in a quick note to him. They did a head CT yesterday, so I think if its anything to worry about, he will see it on the scan.
I think we will know next week if we get to go to Waterloo. :) I read him some notes and letters tonight. He was very happy to hear about the free ice cream for life from the gal in Ankeny he used to work with, he shook his head up and down vigorously.
I think we are about to pack up and go find the hotel. Im sleepy and I want dad to settle in and make it through the night off the vent.
I will play him all the music we put together tomorrow.
I saw a note on the dry erase board that the therapist wrote on 6/1 :
Speaking valve eval ~10 minutes! I heard his voice! Will try again to increase time!
That is a good step! This means closer to being off the vent, closer to rehab and closer to talking. It will still be a long arduous process but he is getting there.
His right temple seems to be sunken in which looks odd. No one here seems to care but I mentioned it to Dr. Lopes in a quick note to him. They did a head CT yesterday, so I think if its anything to worry about, he will see it on the scan.
I think we will know next week if we get to go to Waterloo. :) I read him some notes and letters tonight. He was very happy to hear about the free ice cream for life from the gal in Ankeny he used to work with, he shook his head up and down vigorously.
I think we are about to pack up and go find the hotel. Im sleepy and I want dad to settle in and make it through the night off the vent.
I will play him all the music we put together tomorrow.
Thursday, June 4, 2009
Hey
Dad ended up weaning for about 12 hours yesterday. He was very tired today. Lopes wanted a head CT before he gets transferred out which they did today. I think when we get there tomorrow they will want us to take the CD images to Rush, it will be quicker that way. Thats fine, we can eat at this yummy place called De Pasada that we all like and I can replace the Rush long sleeve T I just ruined. :)
Wednesday, June 3, 2009
Sorry
I have been absolutely SWAMPED at work lately, I have hardly had time to pee let alone update the blog. Martha's birthday was Monday, I never got a chance to even tell her happy birthday. I think she turned 43. :)
Dad didn't wean at all yesterday. His heart rate was in the 130s up to 150s. They did a chest CT and an EKG. Nothing significant was found. I was thinking that he could possibly be dehydrated, but the doctor shot down that theory to Martha. They weren't going to wean him today either, but one of the head nurse ladies talked the doc into giving him a lopressor and xanax, that did the trick, his HR dropped so they let him wean. I do not know how long he weaned for today.
Marth cleaned his ears out, I guess there were potatos growing in there. He is trying to communicate more, but he cant look at the letters very well and point, he isnt tracking well with his eyes.
Carol Harris wants to add My Way to the song list, that song reminds her of him, so now there is a new song.
Fingers crossed, dad may be coming back to Iowa within the next week!!!! Coleman, Jordan and I are going Friday at noon to see him, coming back Sunday.
Dad didn't wean at all yesterday. His heart rate was in the 130s up to 150s. They did a chest CT and an EKG. Nothing significant was found. I was thinking that he could possibly be dehydrated, but the doctor shot down that theory to Martha. They weren't going to wean him today either, but one of the head nurse ladies talked the doc into giving him a lopressor and xanax, that did the trick, his HR dropped so they let him wean. I do not know how long he weaned for today.
Marth cleaned his ears out, I guess there were potatos growing in there. He is trying to communicate more, but he cant look at the letters very well and point, he isnt tracking well with his eyes.
Carol Harris wants to add My Way to the song list, that song reminds her of him, so now there is a new song.
Fingers crossed, dad may be coming back to Iowa within the next week!!!! Coleman, Jordan and I are going Friday at noon to see him, coming back Sunday.
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