How many times has your child been in the hospital?

C

ConnorsMom

New member
Connor had surgery to correct inguinal hernias, that lead to his diagnosis because he lacks vas deferas, that was age 8 weeks.
At 3 1/2 yrs he had a liver obstruction that they never could determine if it was 'CF Sludge' or just a narrow billeary tree- he was on actogall for a year, with no change in liver enzymes, now they just watch his levels.
Then nothing besides sinus infections that lead to ear infections (Flonase fixed that) until Jul 07 when he had his g-tube placed, it failed and needed to be replaced in Sept 07- spent 9 days in the hospital and 3 weeks home at home healing.
He just went in yesterday for his very first Tune-Up because at his appt on Wed his lung capacity was down 25%. This happened last Dec as well, and with a week of antibiotics and extra vest/pulmozyme/saline sessions he recovered all of that. We haven't been able to keep him healthy (despite adding the vest and hypertonic saline to the regimne) since we moved to VA. By healthy, I mean no runny nose/cough. He apparently suffers from allergies (being tested this week while he's in) and goes from those symptoms into a virus that he picks up from who knows where. It's been a rough 3 yrs.
 
C

ConnorsMom

New member
Connor had surgery to correct inguinal hernias, that lead to his diagnosis because he lacks vas deferas, that was age 8 weeks.
At 3 1/2 yrs he had a liver obstruction that they never could determine if it was 'CF Sludge' or just a narrow billeary tree- he was on actogall for a year, with no change in liver enzymes, now they just watch his levels.
Then nothing besides sinus infections that lead to ear infections (Flonase fixed that) until Jul 07 when he had his g-tube placed, it failed and needed to be replaced in Sept 07- spent 9 days in the hospital and 3 weeks home at home healing.
He just went in yesterday for his very first Tune-Up because at his appt on Wed his lung capacity was down 25%. This happened last Dec as well, and with a week of antibiotics and extra vest/pulmozyme/saline sessions he recovered all of that. We haven't been able to keep him healthy (despite adding the vest and hypertonic saline to the regimne) since we moved to VA. By healthy, I mean no runny nose/cough. He apparently suffers from allergies (being tested this week while he's in) and goes from those symptoms into a virus that he picks up from who knows where. It's been a rough 3 yrs.
 
C

ConnorsMom

New member
Connor had surgery to correct inguinal hernias, that lead to his diagnosis because he lacks vas deferas, that was age 8 weeks.
At 3 1/2 yrs he had a liver obstruction that they never could determine if it was 'CF Sludge' or just a narrow billeary tree- he was on actogall for a year, with no change in liver enzymes, now they just watch his levels.
Then nothing besides sinus infections that lead to ear infections (Flonase fixed that) until Jul 07 when he had his g-tube placed, it failed and needed to be replaced in Sept 07- spent 9 days in the hospital and 3 weeks home at home healing.
He just went in yesterday for his very first Tune-Up because at his appt on Wed his lung capacity was down 25%. This happened last Dec as well, and with a week of antibiotics and extra vest/pulmozyme/saline sessions he recovered all of that. We haven't been able to keep him healthy (despite adding the vest and hypertonic saline to the regimne) since we moved to VA. By healthy, I mean no runny nose/cough. He apparently suffers from allergies (being tested this week while he's in) and goes from those symptoms into a virus that he picks up from who knows where. It's been a rough 3 yrs.
 
C

ConnorsMom

New member
Connor had surgery to correct inguinal hernias, that lead to his diagnosis because he lacks vas deferas, that was age 8 weeks.
At 3 1/2 yrs he had a liver obstruction that they never could determine if it was 'CF Sludge' or just a narrow billeary tree- he was on actogall for a year, with no change in liver enzymes, now they just watch his levels.
Then nothing besides sinus infections that lead to ear infections (Flonase fixed that) until Jul 07 when he had his g-tube placed, it failed and needed to be replaced in Sept 07- spent 9 days in the hospital and 3 weeks home at home healing.
He just went in yesterday for his very first Tune-Up because at his appt on Wed his lung capacity was down 25%. This happened last Dec as well, and with a week of antibiotics and extra vest/pulmozyme/saline sessions he recovered all of that. We haven't been able to keep him healthy (despite adding the vest and hypertonic saline to the regimne) since we moved to VA. By healthy, I mean no runny nose/cough. He apparently suffers from allergies (being tested this week while he's in) and goes from those symptoms into a virus that he picks up from who knows where. It's been a rough 3 yrs.
 
C

ConnorsMom

New member
Connor had surgery to correct inguinal hernias, that lead to his diagnosis because he lacks vas deferas, that was age 8 weeks.
<br />At 3 1/2 yrs he had a liver obstruction that they never could determine if it was 'CF Sludge' or just a narrow billeary tree- he was on actogall for a year, with no change in liver enzymes, now they just watch his levels.
<br />Then nothing besides sinus infections that lead to ear infections (Flonase fixed that) until Jul 07 when he had his g-tube placed, it failed and needed to be replaced in Sept 07- spent 9 days in the hospital and 3 weeks home at home healing.
<br />He just went in yesterday for his very first Tune-Up because at his appt on Wed his lung capacity was down 25%. This happened last Dec as well, and with a week of antibiotics and extra vest/pulmozyme/saline sessions he recovered all of that. We haven't been able to keep him healthy (despite adding the vest and hypertonic saline to the regimne) since we moved to VA. By healthy, I mean no runny nose/cough. He apparently suffers from allergies (being tested this week while he's in) and goes from those symptoms into a virus that he picks up from who knows where. It's been a rough 3 yrs.
<br />
 
V

vmhoward

New member
I dont want to scare you because all kids are different, and not all CF kids have as severe symptoms as others. Garran has had some severe problems but please dont be frustrated or discouraged.

Garran is 7 years old and was diagnosed at 2 months of age with failure to thrive. He had been admitted to the hospital three times prior for dehydration and some tests, and was in the NICU for 7 days following birth because he was desatting. And after numerous diagnoses he was diagnosed with CF at 2 months after losing a pound and a half since birth. He was 9 lb's 5 oz at birth and was 8 lbs at Dx.

Anyway, from there he was admitted often for his first year about 15 times total for various pneumonias and infections. Then a few times when he was 2 but his largest amount of stays happened after we moved here to VA.

All in all I couldnt tell you how many times but ballpark probably close to 30. Many of which at 14 + days a piece.

He has had 6 bronchoscopies, the first one at 4 months old. And the rest in the past two years.

He has had:
-2 PH probes
-an upper GI
-a Lower GI
-2 bone density scans
-a Gastric Emptying study
-Many Many CT scans and X rays
-A Lung Perfusion scan,
-A G-Tube placement (MIC-KEY Button)
-A Port a Cath Placement
-A Peritoneal Dialysis Catheter placement and removal (due to kidney failure after ABX for respiratory failure and MRSA sepsis)
-been on the ventilator
-Been on the Bi-Pap
-two 24 hour urine study's for creatinine levels
-Formal PFT's (not really a procedure but different than normal PFT's in the clinic)
-complete workup for lung transplant (I.E 6 minute walk etc...)
-Currently on home Oxygen


As far as tune-ups, all CF Dr's vary on how they do these, basically they just want to catch things before they get bad. Right now Garran is on home IV's starting every month this month. He has been on them every 2 months previously, but his Hospital stays have become more frequent and we want to try and curb that.
 
V

vmhoward

New member
I dont want to scare you because all kids are different, and not all CF kids have as severe symptoms as others. Garran has had some severe problems but please dont be frustrated or discouraged.

Garran is 7 years old and was diagnosed at 2 months of age with failure to thrive. He had been admitted to the hospital three times prior for dehydration and some tests, and was in the NICU for 7 days following birth because he was desatting. And after numerous diagnoses he was diagnosed with CF at 2 months after losing a pound and a half since birth. He was 9 lb's 5 oz at birth and was 8 lbs at Dx.

Anyway, from there he was admitted often for his first year about 15 times total for various pneumonias and infections. Then a few times when he was 2 but his largest amount of stays happened after we moved here to VA.

All in all I couldnt tell you how many times but ballpark probably close to 30. Many of which at 14 + days a piece.

He has had 6 bronchoscopies, the first one at 4 months old. And the rest in the past two years.

He has had:
-2 PH probes
-an upper GI
-a Lower GI
-2 bone density scans
-a Gastric Emptying study
-Many Many CT scans and X rays
-A Lung Perfusion scan,
-A G-Tube placement (MIC-KEY Button)
-A Port a Cath Placement
-A Peritoneal Dialysis Catheter placement and removal (due to kidney failure after ABX for respiratory failure and MRSA sepsis)
-been on the ventilator
-Been on the Bi-Pap
-two 24 hour urine study's for creatinine levels
-Formal PFT's (not really a procedure but different than normal PFT's in the clinic)
-complete workup for lung transplant (I.E 6 minute walk etc...)
-Currently on home Oxygen


As far as tune-ups, all CF Dr's vary on how they do these, basically they just want to catch things before they get bad. Right now Garran is on home IV's starting every month this month. He has been on them every 2 months previously, but his Hospital stays have become more frequent and we want to try and curb that.
 
V

vmhoward

New member
I dont want to scare you because all kids are different, and not all CF kids have as severe symptoms as others. Garran has had some severe problems but please dont be frustrated or discouraged.

Garran is 7 years old and was diagnosed at 2 months of age with failure to thrive. He had been admitted to the hospital three times prior for dehydration and some tests, and was in the NICU for 7 days following birth because he was desatting. And after numerous diagnoses he was diagnosed with CF at 2 months after losing a pound and a half since birth. He was 9 lb's 5 oz at birth and was 8 lbs at Dx.

Anyway, from there he was admitted often for his first year about 15 times total for various pneumonias and infections. Then a few times when he was 2 but his largest amount of stays happened after we moved here to VA.

All in all I couldnt tell you how many times but ballpark probably close to 30. Many of which at 14 + days a piece.

He has had 6 bronchoscopies, the first one at 4 months old. And the rest in the past two years.

He has had:
-2 PH probes
-an upper GI
-a Lower GI
-2 bone density scans
-a Gastric Emptying study
-Many Many CT scans and X rays
-A Lung Perfusion scan,
-A G-Tube placement (MIC-KEY Button)
-A Port a Cath Placement
-A Peritoneal Dialysis Catheter placement and removal (due to kidney failure after ABX for respiratory failure and MRSA sepsis)
-been on the ventilator
-Been on the Bi-Pap
-two 24 hour urine study's for creatinine levels
-Formal PFT's (not really a procedure but different than normal PFT's in the clinic)
-complete workup for lung transplant (I.E 6 minute walk etc...)
-Currently on home Oxygen


As far as tune-ups, all CF Dr's vary on how they do these, basically they just want to catch things before they get bad. Right now Garran is on home IV's starting every month this month. He has been on them every 2 months previously, but his Hospital stays have become more frequent and we want to try and curb that.
 
V

vmhoward

New member
I dont want to scare you because all kids are different, and not all CF kids have as severe symptoms as others. Garran has had some severe problems but please dont be frustrated or discouraged.

Garran is 7 years old and was diagnosed at 2 months of age with failure to thrive. He had been admitted to the hospital three times prior for dehydration and some tests, and was in the NICU for 7 days following birth because he was desatting. And after numerous diagnoses he was diagnosed with CF at 2 months after losing a pound and a half since birth. He was 9 lb's 5 oz at birth and was 8 lbs at Dx.

Anyway, from there he was admitted often for his first year about 15 times total for various pneumonias and infections. Then a few times when he was 2 but his largest amount of stays happened after we moved here to VA.

All in all I couldnt tell you how many times but ballpark probably close to 30. Many of which at 14 + days a piece.

He has had 6 bronchoscopies, the first one at 4 months old. And the rest in the past two years.

He has had:
-2 PH probes
-an upper GI
-a Lower GI
-2 bone density scans
-a Gastric Emptying study
-Many Many CT scans and X rays
-A Lung Perfusion scan,
-A G-Tube placement (MIC-KEY Button)
-A Port a Cath Placement
-A Peritoneal Dialysis Catheter placement and removal (due to kidney failure after ABX for respiratory failure and MRSA sepsis)
-been on the ventilator
-Been on the Bi-Pap
-two 24 hour urine study's for creatinine levels
-Formal PFT's (not really a procedure but different than normal PFT's in the clinic)
-complete workup for lung transplant (I.E 6 minute walk etc...)
-Currently on home Oxygen


As far as tune-ups, all CF Dr's vary on how they do these, basically they just want to catch things before they get bad. Right now Garran is on home IV's starting every month this month. He has been on them every 2 months previously, but his Hospital stays have become more frequent and we want to try and curb that.
 
V

vmhoward

New member
I dont want to scare you because all kids are different, and not all CF kids have as severe symptoms as others. Garran has had some severe problems but please dont be frustrated or discouraged.
<br />
<br />Garran is 7 years old and was diagnosed at 2 months of age with failure to thrive. He had been admitted to the hospital three times prior for dehydration and some tests, and was in the NICU for 7 days following birth because he was desatting. And after numerous diagnoses he was diagnosed with CF at 2 months after losing a pound and a half since birth. He was 9 lb's 5 oz at birth and was 8 lbs at Dx.
<br />
<br />Anyway, from there he was admitted often for his first year about 15 times total for various pneumonias and infections. Then a few times when he was 2 but his largest amount of stays happened after we moved here to VA.
<br />
<br />All in all I couldnt tell you how many times but ballpark probably close to 30. Many of which at 14 + days a piece.
<br />
<br />He has had 6 bronchoscopies, the first one at 4 months old. And the rest in the past two years.
<br />
<br />He has had:
<br />-2 PH probes
<br />-an upper GI
<br />-a Lower GI
<br />-2 bone density scans
<br />-a Gastric Emptying study
<br />-Many Many CT scans and X rays
<br />-A Lung Perfusion scan,
<br />-A G-Tube placement (MIC-KEY Button)
<br />-A Port a Cath Placement
<br />-A Peritoneal Dialysis Catheter placement and removal (due to kidney failure after ABX for respiratory failure and MRSA sepsis)
<br />-been on the ventilator
<br />-Been on the Bi-Pap
<br />-two 24 hour urine study's for creatinine levels
<br />-Formal PFT's (not really a procedure but different than normal PFT's in the clinic)
<br />-complete workup for lung transplant (I.E 6 minute walk etc...)
<br />-Currently on home Oxygen
<br />
<br />
<br />As far as tune-ups, all CF Dr's vary on how they do these, basically they just want to catch things before they get bad. Right now Garran is on home IV's starting every month this month. He has been on them every 2 months previously, but his Hospital stays have become more frequent and we want to try and curb that.
<br />
<br />
<br />
 
W

welshwitch

Guest
Hi--

I'm 28 (soon to be 29).

I've never been in the hospital purely because of CF. I was hospitalized twice, once when I was 9 and again when I was 12, both for one night for sinus surgery.

I've been extremely lucky.

Feel free to PM me with any more questions!
 
W

welshwitch

Guest
Hi--

I'm 28 (soon to be 29).

I've never been in the hospital purely because of CF. I was hospitalized twice, once when I was 9 and again when I was 12, both for one night for sinus surgery.

I've been extremely lucky.

Feel free to PM me with any more questions!
 
W

welshwitch

Guest
Hi--

I'm 28 (soon to be 29).

I've never been in the hospital purely because of CF. I was hospitalized twice, once when I was 9 and again when I was 12, both for one night for sinus surgery.

I've been extremely lucky.

Feel free to PM me with any more questions!
 
W

welshwitch

Guest
Hi--

I'm 28 (soon to be 29).

I've never been in the hospital purely because of CF. I was hospitalized twice, once when I was 9 and again when I was 12, both for one night for sinus surgery.

I've been extremely lucky.

Feel free to PM me with any more questions!
 
W

welshwitch

Guest
Hi--
<br />
<br />I'm 28 (soon to be 29).
<br />
<br />I've never been in the hospital purely because of CF. I was hospitalized twice, once when I was 9 and again when I was 12, both for one night for sinus surgery.
<br />
<br />I've been extremely lucky.
<br />
<br />Feel free to PM me with any more questions!
 
You must log in or register to reply here.
Top