A psychologist came in today to speak with dad about his current condition and to find out dad's wishes. My Aunt Debbie (Dad's sister) was also with him during the conversation. Dad was very much 100% with it and the psychologist was really good at reading lips. The psychologist asked different scenario type questions to see how lucid he was and determine how well his decision making skills were.
Dad was asked if he felt like ever giving up and he said no. He was told that he may be like this for the rest of is life and if that depresses him and makes him want to give up and he said no. He was asked what he would do if he walked into his kitchen and found it to be flooded, dad said, "I would blame my wife." (lol) He was then asked what he would do next and he said that he would shut off the water.
Dad was asked how he felt about leaving RML and going to a facility that would continue to help him wean, versus coming back to Des Moines as a continuous ventilator patient and being around his friends and family. He was adamant that he wanted to go somewhere where he can continue to wean. :)
YAY!!
Tuesday, June 16, 2009
Pray REALLY hard!
Great news, dad has been off the ventilator for over 50 hours and is still going strong and is very alert today. They consider it a goal if he goes 72 hours, WHICH may then show the insurance company that he has met a goal=improved and he can stay for awhile.
The family went to the place in Rock Island that RML is trying to place him in. Scott was SHOCKED about how old and outdated the place looked. He said it was 30 years behind RML and that they had wooden beds, Motel type comforters and most importantly, they DO NOT have full time respiratory care!!!! They have an 8 hour day shift of RT's and for the evenings, one and thats only 3 times per week and no one at night, ever. Scott asked what they did in an emergency and they said they had an RT who lived 5 blocks away who comes if they need help. UM NO!!!!!!!
I called Harmony House and I spoke with the director there yesterday and he remembered me from previous conversations when we originally wanted him to go there. I told him of our plight and he said they would get back to me today, which they did. Natalie called me back and the problem is they don't have an open bed right now..however, dad is first in line to get in there and she even said they would try to find a way to move people around to try and take him too. She was sooo nice. They have FULL TIME respiratory care. I talked to her for about 30 minutes and she told me to have Martha contact the insurance company and have them call her so we can make sure he is covered, and if so, its a done deal, just a matter of getting a room there. PLEASE PRAY THAT WE CAN GET A ROOM!!! It is imperative that we get him there. If he goes to a nursing facility like the one in Rock Island, he wont last. And if that's the case, we could find a comparable place in Des Moines for him to come to and at least be with his friends and family.
Life would be so much easier on him and all of us if he was in Waterloo. Thank you everyone for your thoughts and prayers, cards, letters, sympathy, understanding, stories and friendship. It means the world to all of us. Please pray for Harmony House!!!!
The family went to the place in Rock Island that RML is trying to place him in. Scott was SHOCKED about how old and outdated the place looked. He said it was 30 years behind RML and that they had wooden beds, Motel type comforters and most importantly, they DO NOT have full time respiratory care!!!! They have an 8 hour day shift of RT's and for the evenings, one and thats only 3 times per week and no one at night, ever. Scott asked what they did in an emergency and they said they had an RT who lived 5 blocks away who comes if they need help. UM NO!!!!!!!
I called Harmony House and I spoke with the director there yesterday and he remembered me from previous conversations when we originally wanted him to go there. I told him of our plight and he said they would get back to me today, which they did. Natalie called me back and the problem is they don't have an open bed right now..however, dad is first in line to get in there and she even said they would try to find a way to move people around to try and take him too. She was sooo nice. They have FULL TIME respiratory care. I talked to her for about 30 minutes and she told me to have Martha contact the insurance company and have them call her so we can make sure he is covered, and if so, its a done deal, just a matter of getting a room there. PLEASE PRAY THAT WE CAN GET A ROOM!!! It is imperative that we get him there. If he goes to a nursing facility like the one in Rock Island, he wont last. And if that's the case, we could find a comparable place in Des Moines for him to come to and at least be with his friends and family.
Life would be so much easier on him and all of us if he was in Waterloo. Thank you everyone for your thoughts and prayers, cards, letters, sympathy, understanding, stories and friendship. It means the world to all of us. Please pray for Harmony House!!!!
Monday, June 15, 2009
Dr. Meeting
Scott, Martha, Jordan and Debbie were all at RML today to meet with the doctor there, I'm not sure of what his name is, but I will just call him Asshole. I was able to Skype in and be a part of the meeting. Asshole was very abrasive and not very helpful in my eyes. He basically said that if we move dad to a nursing home, he will die. And it wont be a matter of years, more like days. He even went so far as to say that one option we did have was to take him off the vent and make him comfortable. He didn't even want to hear anything that I had to say or suggest, and the questions I was asking, I was abruptly told that we "weren't going to discuss it." I was like, then why the hell are we here!!
So, that was a non-enlightening meeting. We then spoke with Val who is sort of his liaison lady. She is trying to get him into a place in Rock Island. I called the place in Waterloo today and spoke with the director. He told me he would do everything he could to try and get him admitted there, he is calling me back tomorrow. Keep your fingers crossed!!
He has been weaning for a little over 20 hours. He looked tired when I saw him today. :(
So, that was a non-enlightening meeting. We then spoke with Val who is sort of his liaison lady. She is trying to get him into a place in Rock Island. I called the place in Waterloo today and spoke with the director. He told me he would do everything he could to try and get him admitted there, he is calling me back tomorrow. Keep your fingers crossed!!
He has been weaning for a little over 20 hours. He looked tired when I saw him today. :(
Wednesday, June 10, 2009
ARGH!! SFGJSEFGPJ)*(()$&@$*(^#%^$*@#(^!!!
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!!!!!!!!!!!!!!!!
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!!!!!!!!!!!!!!!!
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.
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