Just from recent experience I know the longer a cf'er is on the vent the more prone they are to infections, I was on the vent for a week and since I wasn't quite ready to be off but they wanted to get me off they put me on Bipap, I was on that for about 4 days and then 50% oxygen, the longer you're on the vent the weaker your lung muscles get and then it's harder to get off. But always go with what the CF docs say they think long term cf health while ICU docs don't. And the CF doc should be able to tell the ICU docs what to do!!!! Please keep us updated, you're in my prayers.
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My Little Bro not doing well PLEASE HELP URGENT!
- Thread starter Kimmiek
- Start date
I don't know if this helps at all, but I have been in ICU at Good Samaritan in Phoenix, and I hope you will feel free to continue to fight the ICU docs and insist that they let the CF docs have the ultimate say. If there is a way they can try slowly weaning him off the vent to see if he is able to begin rebounding, that would be best. I had a nightmare of a time with some of the ICU staff at Good Sam, but fortunately my CF docs listened the first time I complained (in writing on the notebook I had beside my bed, since I obviously couldn't talk) and they adamantly took over all the decision making. I was successfully weaned off the vent, but I don't know if I was as sick as your brother so I don't want to give you any false hope. I was an the vent for about 6 days, and was sedated throughout. Still, I wasn't incoherent, so it makes me mad that they act as though your brother is too out of it to make decisions.
I am so sorry for you to be carrying this heavy load. It is impossible to know exactly what to do, and it is impossible to really know if the ICU docs may be right anyway. But at least they should treat you with absolute respect and be willing to try everything without pressuring you into giving up.
One thing I would like to say to you from the perspective of being a CF patient. I knew that my husband was doing everything he could to try to keep my best interests at heart. Your brother knows how much you love him and how hard you are fighting for him. If I had died, I would never in a million years have wanted my husband to have felt he let me down in any way. I promise you, your brother feels the same way. He knows and is deeply comforted by your love and support. If for some reason he does not do well, please do not beat yourself up for not doing enough. CF is ultimately way more powerful than all of our intentions. Love alone cannot cure CF. Even powerful medications and technology cannot yet win the battle. Please know in your heart that your brother feels the power of your love. You are an awesome sister.
If there is any way I can help, please let me know. I work very near Good Sam, have lots of contacts in the medical world in Phoenix because of my job, and I will do whatever I can to get you information or advice. You can e-mail me at asiansoccer21@cox.net if you'd prefer to contact me personally.
I will keep you and your brother in my thoughts and prayers.
Debi
54 w/cf
I am so sorry for you to be carrying this heavy load. It is impossible to know exactly what to do, and it is impossible to really know if the ICU docs may be right anyway. But at least they should treat you with absolute respect and be willing to try everything without pressuring you into giving up.
One thing I would like to say to you from the perspective of being a CF patient. I knew that my husband was doing everything he could to try to keep my best interests at heart. Your brother knows how much you love him and how hard you are fighting for him. If I had died, I would never in a million years have wanted my husband to have felt he let me down in any way. I promise you, your brother feels the same way. He knows and is deeply comforted by your love and support. If for some reason he does not do well, please do not beat yourself up for not doing enough. CF is ultimately way more powerful than all of our intentions. Love alone cannot cure CF. Even powerful medications and technology cannot yet win the battle. Please know in your heart that your brother feels the power of your love. You are an awesome sister.
If there is any way I can help, please let me know. I work very near Good Sam, have lots of contacts in the medical world in Phoenix because of my job, and I will do whatever I can to get you information or advice. You can e-mail me at asiansoccer21@cox.net if you'd prefer to contact me personally.
I will keep you and your brother in my thoughts and prayers.
Debi
54 w/cf
CFHockeyMom
New member
Kimmiek,
Firstly, I am so sorry you are going through this.
I know first hand what a difficult decision this is. In short, you have to do what you feel Mike would want and what you can live with. If you don't, you will carry that guilt around forever.
I wouldn't let the Dr.'s comment fluster you. It's true. You still are hopeful even if you don't agree with their asessment of Mike's condition.
When I was faced with a similar situation, the best advice I got was from my dad. He told me to ask my grandmother what she wanted. I tried to explain to him that she was sedated and probably wouldn't hear me let alone respond. He told me to ask anyway. I did. My grandmother did respond not by talking, writing or anything that obvious but she did respond. In spite of her response, my mother (my uncle and brother in agreement) decided to go with the Dr.'s advice and remove my grandmother from the vent. In my heart, I knew it wasn't what my grandmother wanted. She was a fighter and had fought against so much that I knew she wanted to fight just a bit longer. I was, however, out voted by family and the medical profession and sat silently. There isn't a day that goes by that I don't think about letting my grandmother down. After all she'd done for me, I could've and should've fought for her. Even if I would have lost in the end, at least I would have tried.
Follow your heart and don't let anyone bully you into a decision.
Mike is very lucky to have such a wonderful advocate.
My thoughts and prayers are with you and Mike.
Firstly, I am so sorry you are going through this.
I know first hand what a difficult decision this is. In short, you have to do what you feel Mike would want and what you can live with. If you don't, you will carry that guilt around forever.
I wouldn't let the Dr.'s comment fluster you. It's true. You still are hopeful even if you don't agree with their asessment of Mike's condition.
When I was faced with a similar situation, the best advice I got was from my dad. He told me to ask my grandmother what she wanted. I tried to explain to him that she was sedated and probably wouldn't hear me let alone respond. He told me to ask anyway. I did. My grandmother did respond not by talking, writing or anything that obvious but she did respond. In spite of her response, my mother (my uncle and brother in agreement) decided to go with the Dr.'s advice and remove my grandmother from the vent. In my heart, I knew it wasn't what my grandmother wanted. She was a fighter and had fought against so much that I knew she wanted to fight just a bit longer. I was, however, out voted by family and the medical profession and sat silently. There isn't a day that goes by that I don't think about letting my grandmother down. After all she'd done for me, I could've and should've fought for her. Even if I would have lost in the end, at least I would have tried.
Follow your heart and don't let anyone bully you into a decision.
Mike is very lucky to have such a wonderful advocate.
My thoughts and prayers are with you and Mike.
I am sorry you are going through this. Here is my story- I had to finally say that's it, no more treatments for my husband. I had rushed him to the hospital and the first thing i was asked by the ER Dr was if I wanted him on a vent. I almost said yes and then I remembered all the conversations we had about him not wanting a vent. David was awake so he said hold off until his blood gas results came back- at that point we decided no more. It was an awful awful decision.
I also got the- you know, he is really sick lecture over and over again. A week before he passed one Doctor told me stop pretending there wasn't an elephant in the room
You and your family are in my thoughts
Dcgal
I also got the- you know, he is really sick lecture over and over again. A week before he passed one Doctor told me stop pretending there wasn't an elephant in the room
You and your family are in my thoughts
Dcgal
I feel for you in this situation. It's hard to offer advise in this situation when it's happening to someone else. If you are having such a hard time with the dr.'s, can you move him to a different facility. I don't know if that is feasible or not. I hate it when docs think they "know all". I would say if he wants to keep fighting, then do whatever you can to help him do that. I know it is a very hard situation. My mother had cancer and was given 6-9 months to live. She lived almost 5 years after her diagnosis. So doctors can be wrong!! I think if he has a fighting spirit, that will certainly help him. I hope things work out; wish I had more useful advise to give you!
I am a 30 yr old CF patient in the Phoenix area and know Dr's Gong
and O'Hagan and have also spent time in Good Sam. They are
good CF docs. I would definitely follow their advice before the ICU
doc's. I have found that many times you need to ask questions
and then take a stand for the best treatment. You can be an
advocate for your brother-you may also want to look into the
possibility of power of attorney. You will then be able to
make choices on your brother's behalf.<br>
<br>
We will be praying for you and Mike as you face this difficult
time.<br>
<br>
and O'Hagan and have also spent time in Good Sam. They are
good CF docs. I would definitely follow their advice before the ICU
doc's. I have found that many times you need to ask questions
and then take a stand for the best treatment. You can be an
advocate for your brother-you may also want to look into the
possibility of power of attorney. You will then be able to
make choices on your brother's behalf.<br>
<br>
We will be praying for you and Mike as you face this difficult
time.<br>
<br>
I agree. Dr. Gong and Dr. O'hagan are great. Matter of fact, I really like everyone at their office. Uly (the guy at the front desk at the clinic) even came by the hospital to pray with Mike last week, as have Carla and Susanne. Wonderful group of people.
Dr. Gong and I discussed taking him off the vent and on to a bipap yesterday. Dr. Gong today said we would do it tomorrow. He has been holding steady on his CO2 and saturation levels with his vent set somewhere between 50 and 60 percent. Dr. Gong is amazed that he has come this far. He said, I need to be aware there is a chance that Mike may not make it through and be able to breathe with the bipap. He said his lungs took a pretty big blow this time. However, he said he can not stay on the vent forever, and staying on any longer would only make things worse for sure. So tomorrow is the day.
Mike and I discussed it today and I told him what was planned for tomorrow (all the good parts that is). We had a little bed work out. He's still strong, and very coherent. They had to put him on a paralytic while he was on the proning bed, so he lost some muscle tone. But he's still got a great sense of humor.
I look at it this way. Mike would want every opportunity to fight. Tomorrow he will have that. Now it is up to whatever agreement God and Mike have. Not what I want or any ICU doctor...I'll be there the whole time to help and support Mike. Saying LOTS AND LOTS of prayers tonight! Dr. Gong says around 1pm tomorrow...
Say a prayer!
Dr. Gong and I discussed taking him off the vent and on to a bipap yesterday. Dr. Gong today said we would do it tomorrow. He has been holding steady on his CO2 and saturation levels with his vent set somewhere between 50 and 60 percent. Dr. Gong is amazed that he has come this far. He said, I need to be aware there is a chance that Mike may not make it through and be able to breathe with the bipap. He said his lungs took a pretty big blow this time. However, he said he can not stay on the vent forever, and staying on any longer would only make things worse for sure. So tomorrow is the day.
Mike and I discussed it today and I told him what was planned for tomorrow (all the good parts that is). We had a little bed work out. He's still strong, and very coherent. They had to put him on a paralytic while he was on the proning bed, so he lost some muscle tone. But he's still got a great sense of humor.
I look at it this way. Mike would want every opportunity to fight. Tomorrow he will have that. Now it is up to whatever agreement God and Mike have. Not what I want or any ICU doctor...I'll be there the whole time to help and support Mike. Saying LOTS AND LOTS of prayers tonight! Dr. Gong says around 1pm tomorrow...
Say a prayer!
It's good to know you now have a plan with the cf docs, and it sounds as if their wishes are now being heard by ICU. I will join with everyone to think powerfully good thoughts tomorrow for a successful transition for Mike off the vent. Bless him for fighting so hard, and bless you for seeing that his wishes are honored. Cyber hugs to both of you. I will be driving past Good Sam tomorrow morning, and will think of you.
Debi
54 w/cf
Debi
54 w/cf
It's good to know you now have a plan with the cf docs, and it sounds as if their wishes are now being heard by ICU. I will join with everyone to think powerfully good thoughts tomorrow for a successful transition for Mike off the vent. Bless him for fighting so hard, and bless you for seeing that his wishes are honored. Cyber hugs to both of you. I will be driving past Good Sam tomorrow morning, and will think of you.
Debi
54 w/cf
Debi
54 w/cf
kayleesgrandma
New member
Kim, I'm adding my thoughts and prayers to you and your brother as you wage this courageous fight agailnst our common enemy--cf. My heart was breaking as I read all the posts here for you. Stay stronge, we are all here for you. I will be thinking of you all nite tonite--or morning, as it's now almost 1:00am. God bless you and your brother.
I go to the cf clinic in pheinox also. Although my son is only 1 we had a stay in I.C.U and Damien was also on a ventator and I felt like they treated me the very same way. Dr O Hagan was the one who saw to some changes medically and personally as far as our treatment went.I want to say I know it completley sucks to be treated that way. Thank god things are getting better. We were at pheinox childrens when we were there.I have never seen doctor O Hagan again or had I ever seen him before but I think of him often. I will pray for your brother and keep fighting. I know my little man did. You are a great sister. A great Person. It takes alot to stay firm God bless you. Dr. Radford is Damiens doc. She is also a fantastic doctor. Just had to reply to someone so close to home.
JohnnaMarie
New member
<img src="i/expressions/heart.gif" border="0">Sending lots and lots of prayers!!
coltsfan715
New member
I am also glad that you now have a plan with the CF docs. I will be sending out extra prayers today just for you. I hope he does well and will be thinking of you both.
Praying for you two,
Lindsey
Praying for you two,
Lindsey