Dad still isn't weaning today. Martha is going to call Valerie to see if she knows why. He also has different antibiotics hanging. It would sure be nice if they communicated a bit better. His thyroid is looking really good, but he will be on thyroid medicine the rest of his life.
Hopefully I will have more of an update later.
Tuesday, June 30, 2009
Monday, June 29, 2009
Monday
No one was with dad this weekend. Scott and I did a wedding together so we couldn't go. From what I know, he slept most the weekend and did not wean. I am not sure that they even tried. He still has a temperature. Martha got there today, he isn't weaning today either, but he is very alert. Martha brought some more books on CD and he is listening to them.
The wound nurse FINALLY has suggested a wound vac. I think that will help him tremendously. The nurse said his head CT was the same, but Martha is going to talk to the doctor about it. She hasn't heard anything about his legs yet and I emailed Dr. Lopes on Friday and he still has yet to respond.
In the next few weeks I am going to try and start planning a benefit for dad. Its getting to the point where this is something that we need to do. He has been in the hospital since Thanksgiving and in Chicago since February. The medical costs are tremendous along with the expense of us going there and being with him. I don't know the first thing about planning a benefit, so if anyone has any ideas, throw them at me, I would appreciate it!!!
The wound nurse FINALLY has suggested a wound vac. I think that will help him tremendously. The nurse said his head CT was the same, but Martha is going to talk to the doctor about it. She hasn't heard anything about his legs yet and I emailed Dr. Lopes on Friday and he still has yet to respond.
In the next few weeks I am going to try and start planning a benefit for dad. Its getting to the point where this is something that we need to do. He has been in the hospital since Thanksgiving and in Chicago since February. The medical costs are tremendous along with the expense of us going there and being with him. I don't know the first thing about planning a benefit, so if anyone has any ideas, throw them at me, I would appreciate it!!!
Thursday, June 25, 2009
Thursday
Dad is not weaning again. He can't tolerate it. He isn't really awake, this bug is really getting to him. They did another benchmark head CT today. I am sure it will be a few days to get those results back.
The doctor checked his lack of feeling in his legs and I guess it has extended to his left arm now. He is going to have a neurologist examine the head CT. I thought Dr. Lopes always examined them...so....I guess maybe he will look for the specific part of the brain that allows you to feel your legs and left arm??
They had to do a sternal rub on him to get him to wake up. They changed his foley out last night and they also took the picc line out, they think that was the cause of this infection.
Dad wants to fight through this, he has told us. I don't like to see him suffer, no one does. But, if he were honestly suffering, than he would tell us and he wouldn't want to go on like this anymore. He may be very content in the state he is in and its those of us who are watching over him that are suffering. When its his time, it is his time. He will know when that is and will make that decision. Until then, all we should do is support him, sit by him through his illness and do whatever we can to make him better. I certainly am not giving up until nothing further can be done. I know he would never give up on us.
The doctor checked his lack of feeling in his legs and I guess it has extended to his left arm now. He is going to have a neurologist examine the head CT. I thought Dr. Lopes always examined them...so....I guess maybe he will look for the specific part of the brain that allows you to feel your legs and left arm??
They had to do a sternal rub on him to get him to wake up. They changed his foley out last night and they also took the picc line out, they think that was the cause of this infection.
Dad wants to fight through this, he has told us. I don't like to see him suffer, no one does. But, if he were honestly suffering, than he would tell us and he wouldn't want to go on like this anymore. He may be very content in the state he is in and its those of us who are watching over him that are suffering. When its his time, it is his time. He will know when that is and will make that decision. Until then, all we should do is support him, sit by him through his illness and do whatever we can to make him better. I certainly am not giving up until nothing further can be done. I know he would never give up on us.
Wednesday, June 24, 2009
Today
Tehy tried weaning him today but to no avail. He numbers started falling. He is still really tired. Still waiting to hear any sort of significant words from any of the rehab facilities and from the doctor on his legs.
Tuesday, June 23, 2009
Infection
Dad has been placed on 3 more antibiotics. They are pulling his Pic line out, they think that may be the root of his infections. He is not weaning today either. He is still very sleepy. Martha forgot to ask about his legs, but the doctor is coming again tomorrow so she will ask him then. She also has a voicemail into Valerie on whether or not she has heard anything about transfer, although I don't think he will be going anywhere for awhile. They are doing a head CT tomorrow just to see if there has been any changes.
Monday, June 22, 2009
Monday
I dont have much to report. Waterloo is still giving Valerie the runaround still. Dad isn't weaning again because of his temperture. They are giving him Tylenol to try and bring it down, plus the debrided his wound this morning and I am sure they gave him some pain pills for it. Valerie is still waiting to talk to the doctor there about dad not being able to feel his legs anymore, so we will see about that.
Thats all I have for today.
Thats all I have for today.
Sunday, June 21, 2009
Happy Father's Day!!
Dad is not weaning today. He is really tired. The doctor wanted him to rest one more day. I think this infection is affecting him a bit more than normal. When we left last night he wouldn't even wake up when we told him we were leaving. I was so tired last night, I was out by 10:30.
We went to Borders this morning and bought dad his Fathers Day present. We got him two Audiobooks: Tom Brokaw: The Greatest Generation and The Twilight Zone Radio Dramas. We are listening to Tom Brokaw now, but he is falling asleep. He may need to listen to this one he isn't so tired. It is pretty interesting though.
I rubbed lotion on his arms and legs and did some range of motion for about an hour. He seemed to enjoy that.
Scott and I decided to check out Waterloo if dad gets accepted first. Take a half day off work and drive up. We didn't want to impose on Father's Day, plus Scott wants to get home to be with his son.
We went to Borders this morning and bought dad his Fathers Day present. We got him two Audiobooks: Tom Brokaw: The Greatest Generation and The Twilight Zone Radio Dramas. We are listening to Tom Brokaw now, but he is falling asleep. He may need to listen to this one he isn't so tired. It is pretty interesting though.
I rubbed lotion on his arms and legs and did some range of motion for about an hour. He seemed to enjoy that.
Scott and I decided to check out Waterloo if dad gets accepted first. Take a half day off work and drive up. We didn't want to impose on Father's Day, plus Scott wants to get home to be with his son.
Saturday, June 20, 2009
RML
We got here today about 1 o'clock. Dad was sleeping. He has another infection which is gram stain negative. From what I read, the difficulty with that is the bacteria cell wall is more difficult to penetrate with antibiotics. They do have him on a new antibiotic, so hopefully it will work like all the other ones he has had to take.
We stayed for about an hour. Valerie's was working today and we spoke with her for a bit about rehab facilities to check out today. We ended up going to 2. Holy Family and Ballard. We went to Holy Family first, it was nice. The guy who showed us around was very informative. It was a quaint, homey type place. I liked it, but they don't have a contract with dads insurance company. He mentioned we could request his insurance company do a single contract, but those are hard to get.
We then went to Ballard. This place is sooo awesome. The entry way is like a 5 star hotel. The rehab facility is unlike any I have EVER seen. They have a car inside for patients to practice getting in and out of, a replica of a grocery store, an ATM, bedroom, kitchen, shower, etc. Everything you could possible need for rehab. There goal is to get you weaned and physically rehabbed as fast as possible. They do rehab 7 days per week. Scott and I REALLY loved this place.
We are swinging through Waterloo on the way home tomorrow to check it out. If it isn't even close to Ballard, Scott and I are pushing for staying in Chicago.
Dad says he cant feel his legs anymore and Valerie was in there when we were poking him too, so she is going to investigate into that further. I hope its nothing serious.
We are going back to the hotel soon. Scott broke his leg walking into a fire hydrant outside this hamburger place called Five Guys Burger and Fries. It was funny.
We stayed for about an hour. Valerie's was working today and we spoke with her for a bit about rehab facilities to check out today. We ended up going to 2. Holy Family and Ballard. We went to Holy Family first, it was nice. The guy who showed us around was very informative. It was a quaint, homey type place. I liked it, but they don't have a contract with dads insurance company. He mentioned we could request his insurance company do a single contract, but those are hard to get.
We then went to Ballard. This place is sooo awesome. The entry way is like a 5 star hotel. The rehab facility is unlike any I have EVER seen. They have a car inside for patients to practice getting in and out of, a replica of a grocery store, an ATM, bedroom, kitchen, shower, etc. Everything you could possible need for rehab. There goal is to get you weaned and physically rehabbed as fast as possible. They do rehab 7 days per week. Scott and I REALLY loved this place.
We are swinging through Waterloo on the way home tomorrow to check it out. If it isn't even close to Ballard, Scott and I are pushing for staying in Chicago.
Dad says he cant feel his legs anymore and Valerie was in there when we were poking him too, so she is going to investigate into that further. I hope its nothing serious.
We are going back to the hotel soon. Scott broke his leg walking into a fire hydrant outside this hamburger place called Five Guys Burger and Fries. It was funny.
Friday, June 19, 2009
Hey
Dad has been weaning since yesterday and he is up sitting in a chair!!! He is on antibiotics again of course. Scott and I are heading there early tomorrow morning and we also have a meeting to tour a place in Des Plaines, IL. Its a Catholic facility so Martha should like it. :)
On a sad note, a past Carlisle Fire Department member passed away this morning. Gene Evans died of cancer. My thoughts go out to Gene's wife Jennifer and their children and family. ;-(
On a sad note, a past Carlisle Fire Department member passed away this morning. Gene Evans died of cancer. My thoughts go out to Gene's wife Jennifer and their children and family. ;-(
Thursday, June 18, 2009
Sweet
A little bit of info....dad weaned for 83 hours!!!!! They took him off at 730 last night because he got a temp of 101. So they are doing cultures and all that jazz to see what type of infection he has. I think he has had quite a lot of interaction with people since our meeting and has been much more alert because of it. When I go there I tend to only bother him with things every once in awhile and spend a majority of my time watching TV in his room or on the computer. I think this weekend, I will keep the computer away and engage him more. Yaay!!
Wednesday, June 17, 2009
I dont even know where to start!
I will first start off with some fantastic news. Dad has been weaning since Sunday morning which is like 76 plus hours and is still doing great. I find it interesting that he has been able to wean this long after I threw a semi fit in Monday's meeting saying that I didn't think they were challenging him enough and a lot of times I thought he was getting put back on the ventilator for stupid reasons. Now look at him. Of course, I can't take all the credit, he is doing a great job and this may be coincidental. Who cares, he is doing it!!!!
Martha, Scott, and Jordan stopped at the place in Rock Island on Monday night. Sort of a surprise swing through during dinner hours. Jordan text messaged me that Scott thought the place was 30 years behind everything else, they didn't offer respiratory care 24/7 and blah, blah, blah. Well, I shut that idea off and so did Scott. I might be recapping some stuff here too, so sorry if I am.
I called Harmony House and the gal there was SO great and said they would get him in ASAP and even went as far as saying she was trying to find a way to get dad in there by moving around some patients. I told Martha to call her and she did. I didn't talk to Martha about it until after work and after the fact that I talked to Valerie, dad's case manager at RML.
I talked to Valerie about 5 o'clock. I told her that we basically were wanting to veto Rock Island, due to lack of 24 hour RT therapy and overall felt unenthusiastic about them being able to treat him successfully. When I told her that they didn't offer 24 hour care she said she didn't know that and also vetoed that idea. So I asked her what happens if we can't find a place that can handle him, and have to wait for a bed elsewhere. She said that insurance would pay for him to stay at RML, however, they will eventually start pushing her to find another facility. I said, "Well, that's good then because there isn't one, we will have to wait for Harmony House to open up." That's when she said no, that there were other places in Illinois that she would feel perfectly comfortable sending him to.
That is where I was confused. At some point during all this, I had it in my head that the only places in the Midwest he could go to was, Waterloo, Rock Island or Omaha. She was just trying to find places closer to US. Well, that gives us more options, but we had all our bets on Harmony. I called Martha after talking to Valerie and she said that Natalie at Harmony told her that they wouldn't even be able to get him in until FALL OR LATER!!!!! Those words NEVER came out of that woman's mouth when she was talking to me. I swear I am so SICK of talking to people who OMIT facts or aren't forthcoming with me!! ARGH!!!
So, I called Rock Island today and I spoke with the director there. She basically said that the person who showed everyone around didn't really know what they were talking about. She said that the facility was an old building, but she assured me that they have up-to-date amenities. They do have a full time RT on staff, but since this is a skilled wing, the nurses there HAVE to be trained it all RT responsibilities. They have physical therapy and occupational therapy that comes in and works with the residents. They also have a dedicated wound nurse who can does water lavage and can use a wound vac if necessary. So, I felt a lot better about that place after our conversation.
This is ultimately Dad's decision as to where he goes. I think we should explore all options and put him in the absolute BEST place for the 130 days that the insurance will pay for to ENSURE he gets the MOST out of his treatment and could potentially have a more successful outcome. If we take him to a sub par place that makes him "comfortable" then, he wont thrive there. So, in the next few days or week even, we should have a better idea where Skippy is going.
Martha, Scott, and Jordan stopped at the place in Rock Island on Monday night. Sort of a surprise swing through during dinner hours. Jordan text messaged me that Scott thought the place was 30 years behind everything else, they didn't offer respiratory care 24/7 and blah, blah, blah. Well, I shut that idea off and so did Scott. I might be recapping some stuff here too, so sorry if I am.
I called Harmony House and the gal there was SO great and said they would get him in ASAP and even went as far as saying she was trying to find a way to get dad in there by moving around some patients. I told Martha to call her and she did. I didn't talk to Martha about it until after work and after the fact that I talked to Valerie, dad's case manager at RML.
I talked to Valerie about 5 o'clock. I told her that we basically were wanting to veto Rock Island, due to lack of 24 hour RT therapy and overall felt unenthusiastic about them being able to treat him successfully. When I told her that they didn't offer 24 hour care she said she didn't know that and also vetoed that idea. So I asked her what happens if we can't find a place that can handle him, and have to wait for a bed elsewhere. She said that insurance would pay for him to stay at RML, however, they will eventually start pushing her to find another facility. I said, "Well, that's good then because there isn't one, we will have to wait for Harmony House to open up." That's when she said no, that there were other places in Illinois that she would feel perfectly comfortable sending him to.
That is where I was confused. At some point during all this, I had it in my head that the only places in the Midwest he could go to was, Waterloo, Rock Island or Omaha. She was just trying to find places closer to US. Well, that gives us more options, but we had all our bets on Harmony. I called Martha after talking to Valerie and she said that Natalie at Harmony told her that they wouldn't even be able to get him in until FALL OR LATER!!!!! Those words NEVER came out of that woman's mouth when she was talking to me. I swear I am so SICK of talking to people who OMIT facts or aren't forthcoming with me!! ARGH!!!
So, I called Rock Island today and I spoke with the director there. She basically said that the person who showed everyone around didn't really know what they were talking about. She said that the facility was an old building, but she assured me that they have up-to-date amenities. They do have a full time RT on staff, but since this is a skilled wing, the nurses there HAVE to be trained it all RT responsibilities. They have physical therapy and occupational therapy that comes in and works with the residents. They also have a dedicated wound nurse who can does water lavage and can use a wound vac if necessary. So, I felt a lot better about that place after our conversation.
This is ultimately Dad's decision as to where he goes. I think we should explore all options and put him in the absolute BEST place for the 130 days that the insurance will pay for to ENSURE he gets the MOST out of his treatment and could potentially have a more successful outcome. If we take him to a sub par place that makes him "comfortable" then, he wont thrive there. So, in the next few days or week even, we should have a better idea where Skippy is going.
Tuesday, June 16, 2009
Update
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!!
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!!
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.
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.
Subscribe to:
Posts (Atom)
