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How many times has your child been in the hospital?
- Thread starter MargaritaChic
- Start date
purplemartin
New member
Briceton was diagnosed by newborn screening.......he was first hospitalized with pneumonia and collapsed lung at 2 months of age, hospitalized at 5 months for nissen fundoplication surgery, hospitalized at 9 months for exacerbation and port placement, and hospitalized at about 14 months with pseudomonas and then another exacerbation. He was since hospitalized again this past March for pneumonia and collapsed lung.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
purplemartin
New member
Briceton was diagnosed by newborn screening.......he was first hospitalized with pneumonia and collapsed lung at 2 months of age, hospitalized at 5 months for nissen fundoplication surgery, hospitalized at 9 months for exacerbation and port placement, and hospitalized at about 14 months with pseudomonas and then another exacerbation. He was since hospitalized again this past March for pneumonia and collapsed lung.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
purplemartin
New member
Briceton was diagnosed by newborn screening.......he was first hospitalized with pneumonia and collapsed lung at 2 months of age, hospitalized at 5 months for nissen fundoplication surgery, hospitalized at 9 months for exacerbation and port placement, and hospitalized at about 14 months with pseudomonas and then another exacerbation. He was since hospitalized again this past March for pneumonia and collapsed lung.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
purplemartin
New member
Briceton was diagnosed by newborn screening.......he was first hospitalized with pneumonia and collapsed lung at 2 months of age, hospitalized at 5 months for nissen fundoplication surgery, hospitalized at 9 months for exacerbation and port placement, and hospitalized at about 14 months with pseudomonas and then another exacerbation. He was since hospitalized again this past March for pneumonia and collapsed lung.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
purplemartin
New member
Briceton was diagnosed by newborn screening.......he was first hospitalized with pneumonia and collapsed lung at 2 months of age, hospitalized at 5 months for nissen fundoplication surgery, hospitalized at 9 months for exacerbation and port placement, and hospitalized at about 14 months with pseudomonas and then another exacerbation. He was since hospitalized again this past March for pneumonia and collapsed lung.
<br />Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
<br />
<br />As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
<br />
<br />He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
<br />
<br />Every time he is put on his "cocktail" of medications and within a few days of inpatient he is usually doing well enough to finish the IV's at home. He is a toughie and at this point most of his exacerbations only put him down for a couple days at a time.
<br />
<br />As far as outpatient services.....we have had many bronchs, CT's, x-rays, swallow studies, ultrasounds, upper GI's, lower GI's, sigmoids, etc......
<br />
<br />He just recently started HTS and it seems to be doing really great for him! Hoping things may level out for him soon! But like you mentioned in your original post, every CFer is different! Heck, there is a LOT of adults on the forums who have never been hospitalized and then some who can't stay away! There is no way of knowing what path CF will take.
<br />
C
Cherylwithone
Guest
Keep in mind all kids are different. With that said Malora was born in 93. In 97 was her frist time in the hospital.
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
Keep in mind all kids are different. With that said Malora was born in 93. In 97 was her frist time in the hospital.
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
Keep in mind all kids are different. With that said Malora was born in 93. In 97 was her frist time in the hospital.
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
Keep in mind all kids are different. With that said Malora was born in 93. In 97 was her frist time in the hospital.
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
Cheryl mom to Malora 15 w/cf
C
Cherylwithone
Guest
Keep in mind all kids are different. With that said Malora was born in 93. In 97 was her frist time in the hospital.
<br />So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
<br />Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
<br />Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
<br />
<br />Cheryl mom to Malora 15 w/cf
<br />So from 97 to 08 she has spent 15 times in. Three of them are this year alone. She has had 3 surgeries. Appendicocecastomy (ACE for short), a MI-KEY, Adenoidectomy. She had several Endoscopy (really bad reflux) 1 colonscopy, several Plylonc Botox injections in her stomach. Bronchosopy, The test she has had done I can't even count on my fingers and toes together. THings were going pretty good until puberty. For some reason for her it sent her system into a tail spin and things have been a mess since. We just take it as it comes. You can't change whaat nature has already set in motion. We do everything that the doctors ask. Alot of prevention stuff.
<br />Everybody's body is different and with no two alike you can not see in the furture. Iam like you I want everything up front. I like to know what Iam dealing with.
<br />Malora on the otherhand just goes with. Does'nt worry. Everything with her rolls off of her. Your daughter may never see the inside of a hospital for a stay.
<br />
<br />Cheryl mom to Malora 15 w/cf
I have two daugters with CF... I'll start with the youngest...
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
I have two daugters with CF... I'll start with the youngest...
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
I have two daugters with CF... I'll start with the youngest...
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
I have two daugters with CF... I'll start with the youngest...
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
I have two daugters with CF... I'll start with the youngest...
<br />
<br />Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
<br />
<br />Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
<br />
<br />A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
<br />
<br />All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
<br />
<br />Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.
<br />
<br />Kacie is 9, dx'd via amnio. She has never been inpatient. She has had 5 outpatient sinus surgeries (we are getting ready to schedule #6). Other than that she's had ear tubes, adnoidectomy, and allergy testing... So nothing extreme...other than the multiple sinus surgeries. The dr is threatening her with a feeding tube right now if she doesn't gain weight... so we are working on that.
<br />
<br />Kaitlyn is 13. She wasn't dx'd until she was 2 1/2 and had already been hospitalized 2X. She was hospitalized again upon being diagnosed. So that made 3X. Prior to dx she had been extremely sick her whole life... very much a failure to thrive baby... From the point of dx until she turned 12 she had no problems. Absolutely nothing... The picture of perfect health (aside from taking enzymes and treatments)...
<br />
<br />A week after her 12th B-day she got hit with a virus that floored her. That was the first time she had been sick in 9 years and when she got it, she got it good. Since that time (1 & 1/2 years) she has been in patient 4X for a total of about 6 weeks. And spent another 4 weeks or so home on IV's. During her first hospital stay she was diagnosed with CFRD and shortly thereafter she had a very serious reaction to growth hormone injections which required a spinal tap and forced us to add an opthomologist and a neurologist to our already long list of specialists.
<br />
<br />All that being said, she is still extremely healthy "relatively speaking". If you compare her to a non-cf'er you may not think so, but compared to what it could be like, I'm very grateful. It just takes more work to keep her that way. Her FEV1 was in the 60's at her lowest point and right now she is back up to 110%. (much of which I credit to Hypertonic Saline being added after her last hospital stay). CF definately has it's place in our lives, but it doesn't prevent the girls from doing anything they want...(knock on wood) So, we really can't ask for better than that....
<br />
<br />Best wishes to you and your family. Hopefully there will be a cure found before your baby ever has to see the inside of a hospital... one can only hope and pray.