Hi All,
Yesterday they told my family we have to make a decision. If you don't remember my past posts, My bro is 28 with CF and has not been doing well for the past year. He had surgery on his sinuses about 10 days ago. I believe the surgery caused a psuedomonus exasperation which put Mike into respitory arrest. He opted at that time for the vent.
After being on the Vent for 9 days today the ICU docs are telling me he won't come off. His CF docs are saying he would have to come a long way to get off. Then I read his (the CF docs) notes yesterday, and he wrote "sister still hopeful". What the hell does that mean? Like I am some kind of idiot. REALLY made me mad. He has this nice conversation with me, then writes that.
They are waiting for me to make a decision. They say they can try to wean him off and see what happens, says the CF doc. The ICU doc wants to stop care. They have told me they want to make him completely comfortable and take the vent out. But I have a real hard time with all of this.
How do you make this kind of decision when it is your family?
Mike said he wanted to fight, just yesterday, before the sedated him again. When they asked him if he wanted to be sedated he said no. The IDIOT ICU doc said he is on too much pain med to make any decision. BULLCRAP! In my heart of hearts I know Mike would want to fight to the very end.
I feel like I would be giving up on him if I had them just pull the vent. But they feel there is no hope. And he can't stay where he is. What they (ICU docs) don't understand is what Mike's baseline is. I have seen him walk around with #'s way off the charts by their standards. His lungs are really bad, and Mike said he would consider transplant as a last option. The ICU docs are not listening to me they are not doing what I asked and they are just sedating him. I HATE the doc who was on yesterday he is a total insensitive Ahole...He is treating me like a blonde bimbo. If one more person tells me "mike has a really bad bug" I am going to puke. The CF docs know I know what I am talking about, but the ICU docs think I am an idiot.
I don't feel like I completely understand what is going on. I read all the reports. His CO2 is hovering at 60 +-. His vent is on 65% O2. Mike normally has a CO2 level at around 50ish anyway and his FEV's are usually around 28% - 35% now.
Is this worse than I think it is?? He has come down to 65% from the 80% he was on two days ago and holding steady. He cultures (and has for a long time) pseudomonus and MRSA. no cepecia. I am fairly up to par on CF, the lab reports and Mike's condition until right now.
I do not have CF and I know Mike has been through alot. I don't know how I would feel in this situation. PLEASE help me understand what is going on and maybe lend me some advice in this situation. What would you do and what would you want? or If you have been through this with a loved one, what did you do??
HELP PLEASE!!!
Yesterday they told my family we have to make a decision. If you don't remember my past posts, My bro is 28 with CF and has not been doing well for the past year. He had surgery on his sinuses about 10 days ago. I believe the surgery caused a psuedomonus exasperation which put Mike into respitory arrest. He opted at that time for the vent.
After being on the Vent for 9 days today the ICU docs are telling me he won't come off. His CF docs are saying he would have to come a long way to get off. Then I read his (the CF docs) notes yesterday, and he wrote "sister still hopeful". What the hell does that mean? Like I am some kind of idiot. REALLY made me mad. He has this nice conversation with me, then writes that.
They are waiting for me to make a decision. They say they can try to wean him off and see what happens, says the CF doc. The ICU doc wants to stop care. They have told me they want to make him completely comfortable and take the vent out. But I have a real hard time with all of this.
How do you make this kind of decision when it is your family?
Mike said he wanted to fight, just yesterday, before the sedated him again. When they asked him if he wanted to be sedated he said no. The IDIOT ICU doc said he is on too much pain med to make any decision. BULLCRAP! In my heart of hearts I know Mike would want to fight to the very end.
I feel like I would be giving up on him if I had them just pull the vent. But they feel there is no hope. And he can't stay where he is. What they (ICU docs) don't understand is what Mike's baseline is. I have seen him walk around with #'s way off the charts by their standards. His lungs are really bad, and Mike said he would consider transplant as a last option. The ICU docs are not listening to me they are not doing what I asked and they are just sedating him. I HATE the doc who was on yesterday he is a total insensitive Ahole...He is treating me like a blonde bimbo. If one more person tells me "mike has a really bad bug" I am going to puke. The CF docs know I know what I am talking about, but the ICU docs think I am an idiot.
I don't feel like I completely understand what is going on. I read all the reports. His CO2 is hovering at 60 +-. His vent is on 65% O2. Mike normally has a CO2 level at around 50ish anyway and his FEV's are usually around 28% - 35% now.
Is this worse than I think it is?? He has come down to 65% from the 80% he was on two days ago and holding steady. He cultures (and has for a long time) pseudomonus and MRSA. no cepecia. I am fairly up to par on CF, the lab reports and Mike's condition until right now.
I do not have CF and I know Mike has been through alot. I don't know how I would feel in this situation. PLEASE help me understand what is going on and maybe lend me some advice in this situation. What would you do and what would you want? or If you have been through this with a loved one, what did you do??
HELP PLEASE!!!