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awkward cituation

JustDucky

New member
I too think it is great that you helping out this family...CF is hard to swallow when the diagnosis is given, often overwhelming. I agree what the others have said, tell a little about yourself, invite them to ask questions and pretty soon all of you will be comfortable asking and answering. I have done this not so much with CF (only have been dealing with CF issues for the few years I have been diagnosed) but more so with vent issues, to vent or not to vent. I have been approached while in the hospital for IV's to talk to families of those who are considering chronic ventilation. No doubt a very scary topic for anyone. But, I just sit with them, describe what it is like to be vented and trached, the recovery period, how it impacts my life what I had to do differently and most importantly, would I do it all over again. I am a jabber jaw by nature, so it really wasn't tough for me..I think it was so much harder on the patient/family to talk to me seeing all of the tubes etc. Ultimately, they did become more comfortable, you just can tell.
I hope that your visit goes well, good luck to you..Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I too think it is great that you helping out this family...CF is hard to swallow when the diagnosis is given, often overwhelming. I agree what the others have said, tell a little about yourself, invite them to ask questions and pretty soon all of you will be comfortable asking and answering. I have done this not so much with CF (only have been dealing with CF issues for the few years I have been diagnosed) but more so with vent issues, to vent or not to vent. I have been approached while in the hospital for IV's to talk to families of those who are considering chronic ventilation. No doubt a very scary topic for anyone. But, I just sit with them, describe what it is like to be vented and trached, the recovery period, how it impacts my life what I had to do differently and most importantly, would I do it all over again. I am a jabber jaw by nature, so it really wasn't tough for me..I think it was so much harder on the patient/family to talk to me seeing all of the tubes etc. Ultimately, they did become more comfortable, you just can tell.
I hope that your visit goes well, good luck to you..Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I too think it is great that you helping out this family...CF is hard to swallow when the diagnosis is given, often overwhelming. I agree what the others have said, tell a little about yourself, invite them to ask questions and pretty soon all of you will be comfortable asking and answering. I have done this not so much with CF (only have been dealing with CF issues for the few years I have been diagnosed) but more so with vent issues, to vent or not to vent. I have been approached while in the hospital for IV's to talk to families of those who are considering chronic ventilation. No doubt a very scary topic for anyone. But, I just sit with them, describe what it is like to be vented and trached, the recovery period, how it impacts my life what I had to do differently and most importantly, would I do it all over again. I am a jabber jaw by nature, so it really wasn't tough for me..I think it was so much harder on the patient/family to talk to me seeing all of the tubes etc. Ultimately, they did become more comfortable, you just can tell.
I hope that your visit goes well, good luck to you..Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I too think it is great that you helping out this family...CF is hard to swallow when the diagnosis is given, often overwhelming. I agree what the others have said, tell a little about yourself, invite them to ask questions and pretty soon all of you will be comfortable asking and answering. I have done this not so much with CF (only have been dealing with CF issues for the few years I have been diagnosed) but more so with vent issues, to vent or not to vent. I have been approached while in the hospital for IV's to talk to families of those who are considering chronic ventilation. No doubt a very scary topic for anyone. But, I just sit with them, describe what it is like to be vented and trached, the recovery period, how it impacts my life what I had to do differently and most importantly, would I do it all over again. I am a jabber jaw by nature, so it really wasn't tough for me..I think it was so much harder on the patient/family to talk to me seeing all of the tubes etc. Ultimately, they did become more comfortable, you just can tell.
I hope that your visit goes well, good luck to you..Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

JustDucky

New member
I too think it is great that you helping out this family...CF is hard to swallow when the diagnosis is given, often overwhelming. I agree what the others have said, tell a little about yourself, invite them to ask questions and pretty soon all of you will be comfortable asking and answering. I have done this not so much with CF (only have been dealing with CF issues for the few years I have been diagnosed) but more so with vent issues, to vent or not to vent. I have been approached while in the hospital for IV's to talk to families of those who are considering chronic ventilation. No doubt a very scary topic for anyone. But, I just sit with them, describe what it is like to be vented and trached, the recovery period, how it impacts my life what I had to do differently and most importantly, would I do it all over again. I am a jabber jaw by nature, so it really wasn't tough for me..I think it was so much harder on the patient/family to talk to me seeing all of the tubes etc. Ultimately, they did become more comfortable, you just can tell.
I hope that your visit goes well, good luck to you..Jenn <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

mom2lillian

New member
Robert-After the first ice breaking few minutes I bet it wont be akward at all, it might even be enjoyable. I have talked with a couple women in my community who have teenagers and some with younger kids and it is very fun. There is one woman whom I have a rapor with now and she asks me all sorts of information all time and we talk for a LONG time without realizing it. I have even had women with their children come up to me at the Great Strides walk wanting to chat because they hear I am amicable to it and very open and healthy so they want to 'see me' LOL.

Perhaps you can reframe your thinking into what an awesome experience you care giving these parents. You are the expert and they just want a little bit of your knowledge. In my experience the best thing you can do it make sure to let them know that there are no questions off limits that you wont be upset if they ask something medically personal or whatever (assuming you wont). Like someone mentioned they might not get as much out of the conversation because they will assume that some thign are too embaressing ot talk about.

I would be interested to hear the outcome of your meeting.

Good luck & have fun!
 

mom2lillian

New member
Robert-After the first ice breaking few minutes I bet it wont be akward at all, it might even be enjoyable. I have talked with a couple women in my community who have teenagers and some with younger kids and it is very fun. There is one woman whom I have a rapor with now and she asks me all sorts of information all time and we talk for a LONG time without realizing it. I have even had women with their children come up to me at the Great Strides walk wanting to chat because they hear I am amicable to it and very open and healthy so they want to 'see me' LOL.

Perhaps you can reframe your thinking into what an awesome experience you care giving these parents. You are the expert and they just want a little bit of your knowledge. In my experience the best thing you can do it make sure to let them know that there are no questions off limits that you wont be upset if they ask something medically personal or whatever (assuming you wont). Like someone mentioned they might not get as much out of the conversation because they will assume that some thign are too embaressing ot talk about.

I would be interested to hear the outcome of your meeting.

Good luck & have fun!
 

mom2lillian

New member
Robert-After the first ice breaking few minutes I bet it wont be akward at all, it might even be enjoyable. I have talked with a couple women in my community who have teenagers and some with younger kids and it is very fun. There is one woman whom I have a rapor with now and she asks me all sorts of information all time and we talk for a LONG time without realizing it. I have even had women with their children come up to me at the Great Strides walk wanting to chat because they hear I am amicable to it and very open and healthy so they want to 'see me' LOL.

Perhaps you can reframe your thinking into what an awesome experience you care giving these parents. You are the expert and they just want a little bit of your knowledge. In my experience the best thing you can do it make sure to let them know that there are no questions off limits that you wont be upset if they ask something medically personal or whatever (assuming you wont). Like someone mentioned they might not get as much out of the conversation because they will assume that some thign are too embaressing ot talk about.

I would be interested to hear the outcome of your meeting.

Good luck & have fun!
 

mom2lillian

New member
Robert-After the first ice breaking few minutes I bet it wont be akward at all, it might even be enjoyable. I have talked with a couple women in my community who have teenagers and some with younger kids and it is very fun. There is one woman whom I have a rapor with now and she asks me all sorts of information all time and we talk for a LONG time without realizing it. I have even had women with their children come up to me at the Great Strides walk wanting to chat because they hear I am amicable to it and very open and healthy so they want to 'see me' LOL.

Perhaps you can reframe your thinking into what an awesome experience you care giving these parents. You are the expert and they just want a little bit of your knowledge. In my experience the best thing you can do it make sure to let them know that there are no questions off limits that you wont be upset if they ask something medically personal or whatever (assuming you wont). Like someone mentioned they might not get as much out of the conversation because they will assume that some thign are too embaressing ot talk about.

I would be interested to hear the outcome of your meeting.

Good luck & have fun!
 

mom2lillian

New member
Robert-After the first ice breaking few minutes I bet it wont be akward at all, it might even be enjoyable. I have talked with a couple women in my community who have teenagers and some with younger kids and it is very fun. There is one woman whom I have a rapor with now and she asks me all sorts of information all time and we talk for a LONG time without realizing it. I have even had women with their children come up to me at the Great Strides walk wanting to chat because they hear I am amicable to it and very open and healthy so they want to 'see me' LOL.

Perhaps you can reframe your thinking into what an awesome experience you care giving these parents. You are the expert and they just want a little bit of your knowledge. In my experience the best thing you can do it make sure to let them know that there are no questions off limits that you wont be upset if they ask something medically personal or whatever (assuming you wont). Like someone mentioned they might not get as much out of the conversation because they will assume that some thign are too embaressing ot talk about.

I would be interested to hear the outcome of your meeting.

Good luck & have fun!
 

JORDYSMOM

New member
Robert I know you will do fine. I have chatted with you quite a bit and you are very well spoken and easy to talk to. I agree with everyone else that these parents will feel better just meeting you. They will be encouraged by the fact that you are active in your school's marching band, and that you are just like any other high school kid.

You are very kind to do this. Let us know how it goes.

Stacey
 

JORDYSMOM

New member
Robert I know you will do fine. I have chatted with you quite a bit and you are very well spoken and easy to talk to. I agree with everyone else that these parents will feel better just meeting you. They will be encouraged by the fact that you are active in your school's marching band, and that you are just like any other high school kid.

You are very kind to do this. Let us know how it goes.

Stacey
 

JORDYSMOM

New member
Robert I know you will do fine. I have chatted with you quite a bit and you are very well spoken and easy to talk to. I agree with everyone else that these parents will feel better just meeting you. They will be encouraged by the fact that you are active in your school's marching band, and that you are just like any other high school kid.

You are very kind to do this. Let us know how it goes.

Stacey
 

JORDYSMOM

New member
Robert I know you will do fine. I have chatted with you quite a bit and you are very well spoken and easy to talk to. I agree with everyone else that these parents will feel better just meeting you. They will be encouraged by the fact that you are active in your school's marching band, and that you are just like any other high school kid.

You are very kind to do this. Let us know how it goes.

Stacey
 

JORDYSMOM

New member
Robert I know you will do fine. I have chatted with you quite a bit and you are very well spoken and easy to talk to. I agree with everyone else that these parents will feel better just meeting you. They will be encouraged by the fact that you are active in your school's marching band, and that you are just like any other high school kid.

You are very kind to do this. Let us know how it goes.

Stacey
 

Ratatosk

Administrator
Staff member
When DS's test results came back as having CF, the neonatolgist contacted a CF doctor who came to talk to us, answer questions and then he called up to the CF floor and had a teenaged patient come down to talk to us, just to see what a CFer looked like. One of our fears was that DS was going to be the sad, lonely, sickly cf kid that no one would ever play with, who wouldn't be able to go to school, participate in regular activities. It was such a RELIEF to see a normal teenager, who lead a normal life. All we knew about CF prior to this was that dreadful ER episode. So it's nice as a parent to see that their child is going to be able to go to school, have a career...

I also spoke with a teen who was getting ready to go off to college and live in the dorms. She was in the hospital for sinus surgery.

My only negative experience when visiting with someone was with a nurse whose son was diagnosed with failure to thrive. And I think she had some unresolved issues, suffered from depression because the told me in detail all the negatives in this dreadful monotone. The last thing I wanted to hear when DS was still in the NICU at 4 weeks was how she spent the first 2-3 years of his life practically living at the hospital, living at the ER.
 

Ratatosk

Administrator
Staff member
When DS's test results came back as having CF, the neonatolgist contacted a CF doctor who came to talk to us, answer questions and then he called up to the CF floor and had a teenaged patient come down to talk to us, just to see what a CFer looked like. One of our fears was that DS was going to be the sad, lonely, sickly cf kid that no one would ever play with, who wouldn't be able to go to school, participate in regular activities. It was such a RELIEF to see a normal teenager, who lead a normal life. All we knew about CF prior to this was that dreadful ER episode. So it's nice as a parent to see that their child is going to be able to go to school, have a career...

I also spoke with a teen who was getting ready to go off to college and live in the dorms. She was in the hospital for sinus surgery.

My only negative experience when visiting with someone was with a nurse whose son was diagnosed with failure to thrive. And I think she had some unresolved issues, suffered from depression because the told me in detail all the negatives in this dreadful monotone. The last thing I wanted to hear when DS was still in the NICU at 4 weeks was how she spent the first 2-3 years of his life practically living at the hospital, living at the ER.
 

Ratatosk

Administrator
Staff member
When DS's test results came back as having CF, the neonatolgist contacted a CF doctor who came to talk to us, answer questions and then he called up to the CF floor and had a teenaged patient come down to talk to us, just to see what a CFer looked like. One of our fears was that DS was going to be the sad, lonely, sickly cf kid that no one would ever play with, who wouldn't be able to go to school, participate in regular activities. It was such a RELIEF to see a normal teenager, who lead a normal life. All we knew about CF prior to this was that dreadful ER episode. So it's nice as a parent to see that their child is going to be able to go to school, have a career...

I also spoke with a teen who was getting ready to go off to college and live in the dorms. She was in the hospital for sinus surgery.

My only negative experience when visiting with someone was with a nurse whose son was diagnosed with failure to thrive. And I think she had some unresolved issues, suffered from depression because the told me in detail all the negatives in this dreadful monotone. The last thing I wanted to hear when DS was still in the NICU at 4 weeks was how she spent the first 2-3 years of his life practically living at the hospital, living at the ER.
 

Ratatosk

Administrator
Staff member
When DS's test results came back as having CF, the neonatolgist contacted a CF doctor who came to talk to us, answer questions and then he called up to the CF floor and had a teenaged patient come down to talk to us, just to see what a CFer looked like. One of our fears was that DS was going to be the sad, lonely, sickly cf kid that no one would ever play with, who wouldn't be able to go to school, participate in regular activities. It was such a RELIEF to see a normal teenager, who lead a normal life. All we knew about CF prior to this was that dreadful ER episode. So it's nice as a parent to see that their child is going to be able to go to school, have a career...

I also spoke with a teen who was getting ready to go off to college and live in the dorms. She was in the hospital for sinus surgery.

My only negative experience when visiting with someone was with a nurse whose son was diagnosed with failure to thrive. And I think she had some unresolved issues, suffered from depression because the told me in detail all the negatives in this dreadful monotone. The last thing I wanted to hear when DS was still in the NICU at 4 weeks was how she spent the first 2-3 years of his life practically living at the hospital, living at the ER.
 

Ratatosk

Administrator
Staff member
When DS's test results came back as having CF, the neonatolgist contacted a CF doctor who came to talk to us, answer questions and then he called up to the CF floor and had a teenaged patient come down to talk to us, just to see what a CFer looked like. One of our fears was that DS was going to be the sad, lonely, sickly cf kid that no one would ever play with, who wouldn't be able to go to school, participate in regular activities. It was such a RELIEF to see a normal teenager, who lead a normal life. All we knew about CF prior to this was that dreadful ER episode. So it's nice as a parent to see that their child is going to be able to go to school, have a career...

I also spoke with a teen who was getting ready to go off to college and live in the dorms. She was in the hospital for sinus surgery.

My only negative experience when visiting with someone was with a nurse whose son was diagnosed with failure to thrive. And I think she had some unresolved issues, suffered from depression because the told me in detail all the negatives in this dreadful monotone. The last thing I wanted to hear when DS was still in the NICU at 4 weeks was how she spent the first 2-3 years of his life practically living at the hospital, living at the ER.
 
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