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R

Rickiesmom

Guest
Hello everyone-just found out a couple of weeks ago that our youngest son has cf (double Delta f 508) He has had infections on and off his whole life..a chronic wet cough his whole life that doctors assumed were allergies! I asked about cf when he was 18 months old and they poo poed me.

They did the sweat test 96/97 and 97/97 and another one when we went to Detroit Children's Hospital. He has a staff infection and bacteria in his lungs. He is on cipro, pulmozyme and the vest and of course enzymes. He was hospitalized last week with, I can't spell the name but it's where his intestines folding in on itself. Apparently they might hospitalize him again for IV meds to try to get rid of his cough. I am numb, actually it's hard to believe all of this is real...

When does this start to feel normal and how do any of you cope especially if you have other children? I feel torn in 6 different directions.

Thank you for any of your advice and encouraging words.
 
R

Rickiesmom

Guest
Hello everyone-just found out a couple of weeks ago that our youngest son has cf (double Delta f 508) He has had infections on and off his whole life..a chronic wet cough his whole life that doctors assumed were allergies! I asked about cf when he was 18 months old and they poo poed me.

They did the sweat test 96/97 and 97/97 and another one when we went to Detroit Children's Hospital. He has a staff infection and bacteria in his lungs. He is on cipro, pulmozyme and the vest and of course enzymes. He was hospitalized last week with, I can't spell the name but it's where his intestines folding in on itself. Apparently they might hospitalize him again for IV meds to try to get rid of his cough. I am numb, actually it's hard to believe all of this is real...

When does this start to feel normal and how do any of you cope especially if you have other children? I feel torn in 6 different directions.

Thank you for any of your advice and encouraging words.
 
R

Rickiesmom

Guest
Hello everyone-just found out a couple of weeks ago that our youngest son has cf (double Delta f 508) He has had infections on and off his whole life..a chronic wet cough his whole life that doctors assumed were allergies! I asked about cf when he was 18 months old and they poo poed me.

They did the sweat test 96/97 and 97/97 and another one when we went to Detroit Children's Hospital. He has a staff infection and bacteria in his lungs. He is on cipro, pulmozyme and the vest and of course enzymes. He was hospitalized last week with, I can't spell the name but it's where his intestines folding in on itself. Apparently they might hospitalize him again for IV meds to try to get rid of his cough. I am numb, actually it's hard to believe all of this is real...

When does this start to feel normal and how do any of you cope especially if you have other children? I feel torn in 6 different directions.

Thank you for any of your advice and encouraging words.
 
R

Rickiesmom

Guest
Hello everyone-just found out a couple of weeks ago that our youngest son has cf (double Delta f 508) He has had infections on and off his whole life..a chronic wet cough his whole life that doctors assumed were allergies! I asked about cf when he was 18 months old and they poo poed me.

They did the sweat test 96/97 and 97/97 and another one when we went to Detroit Children's Hospital. He has a staff infection and bacteria in his lungs. He is on cipro, pulmozyme and the vest and of course enzymes. He was hospitalized last week with, I can't spell the name but it's where his intestines folding in on itself. Apparently they might hospitalize him again for IV meds to try to get rid of his cough. I am numb, actually it's hard to believe all of this is real...

When does this start to feel normal and how do any of you cope especially if you have other children? I feel torn in 6 different directions.

Thank you for any of your advice and encouraging words.
 
R

Rickiesmom

Guest
Hello everyone-just found out a couple of weeks ago that our youngest son has cf (double Delta f 508) He has had infections on and off his whole life..a chronic wet cough his whole life that doctors assumed were allergies! I asked about cf when he was 18 months old and they poo poed me.

They did the sweat test 96/97 and 97/97 and another one when we went to Detroit Children's Hospital. He has a staff infection and bacteria in his lungs. He is on cipro, pulmozyme and the vest and of course enzymes. He was hospitalized last week with, I can't spell the name but it's where his intestines folding in on itself. Apparently they might hospitalize him again for IV meds to try to get rid of his cough. I am numb, actually it's hard to believe all of this is real...

When does this start to feel normal and how do any of you cope especially if you have other children? I feel torn in 6 different directions.

Thank you for any of your advice and encouraging words.
 
M

Mommafirst

Guest
Welcome Rickiesmom --

I'm so sorry to hear that your son has been diagnosed. My oldest son is Richie (no CF) but he's the same age as your Rickie. Diagnosis is hard, really hard and it feels like there is a black cloud sitting over your head making other life tasks seem impossible. It takes awhile but it does get better. For sure you have to go through the stages and come to a point where you adjust to the new reality of life -- it sucks, I wish I could make it go away for you, but I can't. My daughter was diagnosed at 5 months and is 21 months now, so after a year and a half I can say that I still have days where I hate CF and all it has done to change my life.

On a good note, your son is getting help. Help to help him get and stay healthier. I'm sure the intestinal issue is very painful and upsetting. I hope he is feeling better. And I hope you will continue to post and learn and vent and compare and participate with us all. (((HUGS)))) to you and your family!!!
 
M

Mommafirst

Guest
Welcome Rickiesmom --

I'm so sorry to hear that your son has been diagnosed. My oldest son is Richie (no CF) but he's the same age as your Rickie. Diagnosis is hard, really hard and it feels like there is a black cloud sitting over your head making other life tasks seem impossible. It takes awhile but it does get better. For sure you have to go through the stages and come to a point where you adjust to the new reality of life -- it sucks, I wish I could make it go away for you, but I can't. My daughter was diagnosed at 5 months and is 21 months now, so after a year and a half I can say that I still have days where I hate CF and all it has done to change my life.

On a good note, your son is getting help. Help to help him get and stay healthier. I'm sure the intestinal issue is very painful and upsetting. I hope he is feeling better. And I hope you will continue to post and learn and vent and compare and participate with us all. (((HUGS)))) to you and your family!!!
 
M

Mommafirst

Guest
Welcome Rickiesmom --

I'm so sorry to hear that your son has been diagnosed. My oldest son is Richie (no CF) but he's the same age as your Rickie. Diagnosis is hard, really hard and it feels like there is a black cloud sitting over your head making other life tasks seem impossible. It takes awhile but it does get better. For sure you have to go through the stages and come to a point where you adjust to the new reality of life -- it sucks, I wish I could make it go away for you, but I can't. My daughter was diagnosed at 5 months and is 21 months now, so after a year and a half I can say that I still have days where I hate CF and all it has done to change my life.

On a good note, your son is getting help. Help to help him get and stay healthier. I'm sure the intestinal issue is very painful and upsetting. I hope he is feeling better. And I hope you will continue to post and learn and vent and compare and participate with us all. (((HUGS)))) to you and your family!!!
 
M

Mommafirst

Guest
Welcome Rickiesmom --

I'm so sorry to hear that your son has been diagnosed. My oldest son is Richie (no CF) but he's the same age as your Rickie. Diagnosis is hard, really hard and it feels like there is a black cloud sitting over your head making other life tasks seem impossible. It takes awhile but it does get better. For sure you have to go through the stages and come to a point where you adjust to the new reality of life -- it sucks, I wish I could make it go away for you, but I can't. My daughter was diagnosed at 5 months and is 21 months now, so after a year and a half I can say that I still have days where I hate CF and all it has done to change my life.

On a good note, your son is getting help. Help to help him get and stay healthier. I'm sure the intestinal issue is very painful and upsetting. I hope he is feeling better. And I hope you will continue to post and learn and vent and compare and participate with us all. (((HUGS)))) to you and your family!!!
 
M

Mommafirst

Guest
Welcome Rickiesmom --

I'm so sorry to hear that your son has been diagnosed. My oldest son is Richie (no CF) but he's the same age as your Rickie. Diagnosis is hard, really hard and it feels like there is a black cloud sitting over your head making other life tasks seem impossible. It takes awhile but it does get better. For sure you have to go through the stages and come to a point where you adjust to the new reality of life -- it sucks, I wish I could make it go away for you, but I can't. My daughter was diagnosed at 5 months and is 21 months now, so after a year and a half I can say that I still have days where I hate CF and all it has done to change my life.

On a good note, your son is getting help. Help to help him get and stay healthier. I'm sure the intestinal issue is very painful and upsetting. I hope he is feeling better. And I hope you will continue to post and learn and vent and compare and participate with us all. (((HUGS)))) to you and your family!!!
 
R

Rickiesmom

Guest
Heather, Thanks so much for your kind words and encouragement, I know that I'm not alone by any means but it sure feels like it right now. No one I know, knows of anyone with cf...we will get through this hard time with him ill right now, and from what I understand by doing everything the doctors tell us we can keep him healthy! He goes back in to the doctors Friday so hopefully his numbers are better...His score or lung function was 43% last time. (what is that called?) I have to get the lingo down so that I can communicate with everyone! Thanks again Heather and HUGS to you and your family as well.

Carey
 
R

Rickiesmom

Guest
Heather, Thanks so much for your kind words and encouragement, I know that I'm not alone by any means but it sure feels like it right now. No one I know, knows of anyone with cf...we will get through this hard time with him ill right now, and from what I understand by doing everything the doctors tell us we can keep him healthy! He goes back in to the doctors Friday so hopefully his numbers are better...His score or lung function was 43% last time. (what is that called?) I have to get the lingo down so that I can communicate with everyone! Thanks again Heather and HUGS to you and your family as well.

Carey
 
R

Rickiesmom

Guest
Heather, Thanks so much for your kind words and encouragement, I know that I'm not alone by any means but it sure feels like it right now. No one I know, knows of anyone with cf...we will get through this hard time with him ill right now, and from what I understand by doing everything the doctors tell us we can keep him healthy! He goes back in to the doctors Friday so hopefully his numbers are better...His score or lung function was 43% last time. (what is that called?) I have to get the lingo down so that I can communicate with everyone! Thanks again Heather and HUGS to you and your family as well.

Carey
 
R

Rickiesmom

Guest
Heather, Thanks so much for your kind words and encouragement, I know that I'm not alone by any means but it sure feels like it right now. No one I know, knows of anyone with cf...we will get through this hard time with him ill right now, and from what I understand by doing everything the doctors tell us we can keep him healthy! He goes back in to the doctors Friday so hopefully his numbers are better...His score or lung function was 43% last time. (what is that called?) I have to get the lingo down so that I can communicate with everyone! Thanks again Heather and HUGS to you and your family as well.

Carey
 
R

Rickiesmom

Guest
Heather, Thanks so much for your kind words and encouragement, I know that I'm not alone by any means but it sure feels like it right now. No one I know, knows of anyone with cf...we will get through this hard time with him ill right now, and from what I understand by doing everything the doctors tell us we can keep him healthy! He goes back in to the doctors Friday so hopefully his numbers are better...His score or lung function was 43% last time. (what is that called?) I have to get the lingo down so that I can communicate with everyone! Thanks again Heather and HUGS to you and your family as well.

Carey
 
A

Alyssa

New member
Sorry to hear you are having a difficult time - with 6 children to take care of I cannot even begin to understand all you are dealing with (even if all of them were perfectly healthy - I don't know how mother's of 6 do it!) Anyway..... I don't have anything really brilliant to say other than on a positive note it's good to finally have the correct diagnosis and with the correct care and treatments he *should* get better/more stable -- it will be nice to deal with CF docs who are experienced at what they do -- not to say CF doesn't throw them some curve balls but at least they should be pretty familiar with the things your son might be presenting with.

Welcome to the site!
 
A

Alyssa

New member
Sorry to hear you are having a difficult time - with 6 children to take care of I cannot even begin to understand all you are dealing with (even if all of them were perfectly healthy - I don't know how mother's of 6 do it!) Anyway..... I don't have anything really brilliant to say other than on a positive note it's good to finally have the correct diagnosis and with the correct care and treatments he *should* get better/more stable -- it will be nice to deal with CF docs who are experienced at what they do -- not to say CF doesn't throw them some curve balls but at least they should be pretty familiar with the things your son might be presenting with.

Welcome to the site!
 
A

Alyssa

New member
Sorry to hear you are having a difficult time - with 6 children to take care of I cannot even begin to understand all you are dealing with (even if all of them were perfectly healthy - I don't know how mother's of 6 do it!) Anyway..... I don't have anything really brilliant to say other than on a positive note it's good to finally have the correct diagnosis and with the correct care and treatments he *should* get better/more stable -- it will be nice to deal with CF docs who are experienced at what they do -- not to say CF doesn't throw them some curve balls but at least they should be pretty familiar with the things your son might be presenting with.

Welcome to the site!
 
A

Alyssa

New member
Sorry to hear you are having a difficult time - with 6 children to take care of I cannot even begin to understand all you are dealing with (even if all of them were perfectly healthy - I don't know how mother's of 6 do it!) Anyway..... I don't have anything really brilliant to say other than on a positive note it's good to finally have the correct diagnosis and with the correct care and treatments he *should* get better/more stable -- it will be nice to deal with CF docs who are experienced at what they do -- not to say CF doesn't throw them some curve balls but at least they should be pretty familiar with the things your son might be presenting with.

Welcome to the site!
 
A

Alyssa

New member
Sorry to hear you are having a difficult time - with 6 children to take care of I cannot even begin to understand all you are dealing with (even if all of them were perfectly healthy - I don't know how mother's of 6 do it!) Anyway..... I don't have anything really brilliant to say other than on a positive note it's good to finally have the correct diagnosis and with the correct care and treatments he *should* get better/more stable -- it will be nice to deal with CF docs who are experienced at what they do -- not to say CF doesn't throw them some curve balls but at least they should be pretty familiar with the things your son might be presenting with.

Welcome to the site!
 
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