How many times has your child been in the hospital?

TestifyToLove · Jun 24, 2008

The best we can piece together his history (we've only had him 3 months and his medical records have HUGE gaps and holes in them), he's been hospitalized at least 7 times. In the last 2 years, he's only been hospitalized once, a month after he came home he was in for a week for a tune-up. Prior to this, his average hospital stay was 40-60 days. He spent his first 78 days of life in the hospital, made it out for 3 weeks and was re-admitted for RSV for another 40+ days. That much we DO know.

TestifyToLove · Jun 24, 2008

The best we can piece together his history (we've only had him 3 months and his medical records have HUGE gaps and holes in them), he's been hospitalized at least 7 times. In the last 2 years, he's only been hospitalized once, a month after he came home he was in for a week for a tune-up. Prior to this, his average hospital stay was 40-60 days. He spent his first 78 days of life in the hospital, made it out for 3 weeks and was re-admitted for RSV for another 40+ days. That much we DO know.

TestifyToLove · Jun 24, 2008

The best we can piece together his history (we've only had him 3 months and his medical records have HUGE gaps and holes in them), he's been hospitalized at least 7 times. In the last 2 years, he's only been hospitalized once, a month after he came home he was in for a week for a tune-up. Prior to this, his average hospital stay was 40-60 days. He spent his first 78 days of life in the hospital, made it out for 3 weeks and was re-admitted for RSV for another 40+ days. That much we DO know.

TestifyToLove · Jun 24, 2008

The best we can piece together his history (we've only had him 3 months and his medical records have HUGE gaps and holes in them), he's been hospitalized at least 7 times. In the last 2 years, he's only been hospitalized once, a month after he came home he was in for a week for a tune-up. Prior to this, his average hospital stay was 40-60 days. He spent his first 78 days of life in the hospital, made it out for 3 weeks and was re-admitted for RSV for another 40+ days. That much we DO know.

TestifyToLove · Jun 24, 2008

The best we can piece together his history (we've only had him 3 months and his medical records have HUGE gaps and holes in them), he's been hospitalized at least 7 times. In the last 2 years, he's only been hospitalized once, a month after he came home he was in for a week for a tune-up. Prior to this, his average hospital stay was 40-60 days. He spent his first 78 days of life in the hospital, made it out for 3 weeks and was re-admitted for RSV for another 40+ days. That much we DO know.

tammykrumrey · Jun 24, 2008

My younger daughter is almost 9, and she has never stayed overnight in a hospital (other than when she was born of course<img src="i/expressions/face-icon-small-smile.gif" border="0">)

My older daughter is 10, and she was hospitalized 1x at 2 months old for dehydration (prio to CF dx) She was dx at 14 months old. She spent about 1 week in the hospital at 15 months old and again at 3 years old, both times for GI problems.

Her first hospitalization due to lung issues was when she was 8 years old, and that was a one week inpatient and finishing off one week at home on IVs.

My nephew with CF, who is going to be 17 this week, has spent so many times in the hospital that we just have lost track. He spent his first two months in the hospital, and then again at about 6 months for a collapsed lung and pnem. He did pretty good until he was about 8 years old, and after that it was just one problem followed by another. Like I said, we have lost count.

They are all so different.

tammykrumrey · Jun 24, 2008

My younger daughter is almost 9, and she has never stayed overnight in a hospital (other than when she was born of course<img src="i/expressions/face-icon-small-smile.gif" border="0">)

My older daughter is 10, and she was hospitalized 1x at 2 months old for dehydration (prio to CF dx) She was dx at 14 months old. She spent about 1 week in the hospital at 15 months old and again at 3 years old, both times for GI problems.

Her first hospitalization due to lung issues was when she was 8 years old, and that was a one week inpatient and finishing off one week at home on IVs.

My nephew with CF, who is going to be 17 this week, has spent so many times in the hospital that we just have lost track. He spent his first two months in the hospital, and then again at about 6 months for a collapsed lung and pnem. He did pretty good until he was about 8 years old, and after that it was just one problem followed by another. Like I said, we have lost count.

They are all so different.

tammykrumrey · Jun 24, 2008

My younger daughter is almost 9, and she has never stayed overnight in a hospital (other than when she was born of course<img src="i/expressions/face-icon-small-smile.gif" border="0">)

My older daughter is 10, and she was hospitalized 1x at 2 months old for dehydration (prio to CF dx) She was dx at 14 months old. She spent about 1 week in the hospital at 15 months old and again at 3 years old, both times for GI problems.

Her first hospitalization due to lung issues was when she was 8 years old, and that was a one week inpatient and finishing off one week at home on IVs.

My nephew with CF, who is going to be 17 this week, has spent so many times in the hospital that we just have lost track. He spent his first two months in the hospital, and then again at about 6 months for a collapsed lung and pnem. He did pretty good until he was about 8 years old, and after that it was just one problem followed by another. Like I said, we have lost count.

They are all so different.

tammykrumrey · Jun 24, 2008

My younger daughter is almost 9, and she has never stayed overnight in a hospital (other than when she was born of course<img src="i/expressions/face-icon-small-smile.gif" border="0">)

My older daughter is 10, and she was hospitalized 1x at 2 months old for dehydration (prio to CF dx) She was dx at 14 months old. She spent about 1 week in the hospital at 15 months old and again at 3 years old, both times for GI problems.

Her first hospitalization due to lung issues was when she was 8 years old, and that was a one week inpatient and finishing off one week at home on IVs.

My nephew with CF, who is going to be 17 this week, has spent so many times in the hospital that we just have lost track. He spent his first two months in the hospital, and then again at about 6 months for a collapsed lung and pnem. He did pretty good until he was about 8 years old, and after that it was just one problem followed by another. Like I said, we have lost count.

They are all so different.

tammykrumrey · Jun 24, 2008

My younger daughter is almost 9, and she has never stayed overnight in a hospital (other than when she was born of course<img src="i/expressions/face-icon-small-smile.gif" border="0">)
 
 My older daughter is 10, and she was hospitalized 1x at 2 months old for dehydration (prio to CF dx) She was dx at 14 months old. She spent about 1 week in the hospital at 15 months old and again at 3 years old, both times for GI problems.
 
 Her first hospitalization due to lung issues was when she was 8 years old, and that was a one week inpatient and finishing off one week at home on IVs.
 
 My nephew with CF, who is going to be 17 this week, has spent so many times in the hospital that we just have lost track. He spent his first two months in the hospital, and then again at about 6 months for a collapsed lung and pnem. He did pretty good until he was about 8 years old, and after that it was just one problem followed by another. Like I said, we have lost count.
 
 They are all so different.

pnhuffman · Jun 24, 2008

Austin is now 7 and he was of course hospitalized at diagnosis at 7 mos. and has been in a total of 7 times. Basically averaging once a year for 14-16 days each time. He had tubes in his ears and tha was out-patient and he has ahad a sleep study done when he was around 3 and he is actaully having another sleep study done tomorrow night.

pnhuffman · Jun 24, 2008

Austin is now 7 and he was of course hospitalized at diagnosis at 7 mos. and has been in a total of 7 times. Basically averaging once a year for 14-16 days each time. He had tubes in his ears and tha was out-patient and he has ahad a sleep study done when he was around 3 and he is actaully having another sleep study done tomorrow night.

pnhuffman · Jun 24, 2008

Austin is now 7 and he was of course hospitalized at diagnosis at 7 mos. and has been in a total of 7 times. Basically averaging once a year for 14-16 days each time. He had tubes in his ears and tha was out-patient and he has ahad a sleep study done when he was around 3 and he is actaully having another sleep study done tomorrow night.

pnhuffman · Jun 24, 2008

Austin is now 7 and he was of course hospitalized at diagnosis at 7 mos. and has been in a total of 7 times. Basically averaging once a year for 14-16 days each time. He had tubes in his ears and tha was out-patient and he has ahad a sleep study done when he was around 3 and he is actaully having another sleep study done tomorrow night.

pnhuffman · Jun 24, 2008

Austin is now 7 and he was of course hospitalized at diagnosis at 7 mos. and has been in a total of 7 times. Basically averaging once a year for 14-16 days each time. He had tubes in his ears and tha was out-patient and he has ahad a sleep study done when he was around 3 and he is actaully having another sleep study done tomorrow night.

fourkidsmom · Jun 24, 2008

Remember that every child with cf is different. My son has been fortunate this past year and 1/2 that he has not been in the hospital since March 2007. He was in the hospital the first 77 days after birth. He was born 3/14/2001. He had a 4 hour bowel surgery at 6 hours old and was left with a stoma bag anad illeostomy for 2 months until he had failure to thrive. He weighed 9 pounds 10 oz at birth and got down to 8 pounds. He had 2 blood transfusions while in the hospital, numerous x-rays, barrium (bowel tests), cultured puesdo in the hospital at 2 months of age, numerous bronch's, had dehydration and low potassium several times and needed to be put back into ICU to get it back to where it needed to be. There was alot going on at that time, but that is the bulk of it.

(the following are from my blog)October 1, 2001 thru October 12, 2001 he went back into the hospital for a lung cleanout. This would be his 2nd one.

August 2, 2002 he caught Pneumonia and was in for his 3rd cleanout in the hospital.

2002- 2005 He then went thru lots of bowel issues, we finally figured out he could not eat corn, peanuts, or popcorn or he would get blockages. When he got these we would do laxatives- 3 different kinds (lactulose, miralax & go-litely)-- 2 to 3 times daily and enemas sometimes up to 4 times daily. He would cry in pain, not beable to eat, extra extended belly, vomit, not beable to sleep and cry constantly. We had a couple of hospital stays during this time for the bowel issues. Finally he would pass the stool and we avoided surgeries. It was a really hard time thru that not knowing what was going on and he was in such pain and losing weight.

Feb 21 thru March 3, 2005 in the hospital He has a lower left lobe collpse and pneumonia. Went in for a lung clean out. (We got to finish IV's at home for the first time, that was nice!)

In April 2005 his port decided to quit working. It had lasted for 4 yrs since he was 2 months old. So he got a new one put in, we never considered not replacing it. It is a real blessing. I always try to do the least amount of pokes possible for him, sometimes there are nurses that want to stick his arm instead of his port and I throw a fit. Need to protect my little guy....

November 11, 2005 thru November 15, 2005 Lung clean out in the hospital and then went home and finished home IV's until November 28th, 2005. Also told by Doctor that he cultured Cepecial-Genomovar III for the first time. This was not a good time, a day I will always remember when we were told that.

December 19, 2005 thru December 22, 2005 First surgery for Nose polups/sinuses. On Home IV for 10 days after December 22, 2005.

Janaury 9, 2005 Home IV for a few days and had the debriment from the sinus surgery.

October 2, 2006 thru October 11, 2006 in the hospital for IV cleanout before surgery. October 9, 2006 had another nose polup/sinus surgery.

October 23, 2006 another debriment surgery

March 1, 2007 G-tube surgery - stayed in the hospital until March 2, 2007 and got to go home.

April 26, 2007 Mickey button placed- got to go home the same afternoon.

Thru out his first 5 yrs he had to go to the emergency room 3 times because he had these spells thru the night where he couldn't breath, but we now have a medication on hand for that and haven't had to go back to the er for that reason.

May 2008 ER for stomach pain and found out had a bowel blockage, did go-lighty and got rid better.

These are times I have recorded. It is funny how he had a bad start and has kind of settled down and had a good run at it. We are talking about a possible tune-up this summer before he starts 2nd grade, we will find out in July.

Fourkidsmom

fourkidsmom · Jun 24, 2008

Remember that every child with cf is different. My son has been fortunate this past year and 1/2 that he has not been in the hospital since March 2007. He was in the hospital the first 77 days after birth. He was born 3/14/2001. He had a 4 hour bowel surgery at 6 hours old and was left with a stoma bag anad illeostomy for 2 months until he had failure to thrive. He weighed 9 pounds 10 oz at birth and got down to 8 pounds. He had 2 blood transfusions while in the hospital, numerous x-rays, barrium (bowel tests), cultured puesdo in the hospital at 2 months of age, numerous bronch's, had dehydration and low potassium several times and needed to be put back into ICU to get it back to where it needed to be. There was alot going on at that time, but that is the bulk of it.

(the following are from my blog)October 1, 2001 thru October 12, 2001 he went back into the hospital for a lung cleanout. This would be his 2nd one.

August 2, 2002 he caught Pneumonia and was in for his 3rd cleanout in the hospital.

2002- 2005 He then went thru lots of bowel issues, we finally figured out he could not eat corn, peanuts, or popcorn or he would get blockages. When he got these we would do laxatives- 3 different kinds (lactulose, miralax & go-litely)-- 2 to 3 times daily and enemas sometimes up to 4 times daily. He would cry in pain, not beable to eat, extra extended belly, vomit, not beable to sleep and cry constantly. We had a couple of hospital stays during this time for the bowel issues. Finally he would pass the stool and we avoided surgeries. It was a really hard time thru that not knowing what was going on and he was in such pain and losing weight.

Feb 21 thru March 3, 2005 in the hospital He has a lower left lobe collpse and pneumonia. Went in for a lung clean out. (We got to finish IV's at home for the first time, that was nice!)

In April 2005 his port decided to quit working. It had lasted for 4 yrs since he was 2 months old. So he got a new one put in, we never considered not replacing it. It is a real blessing. I always try to do the least amount of pokes possible for him, sometimes there are nurses that want to stick his arm instead of his port and I throw a fit. Need to protect my little guy....

November 11, 2005 thru November 15, 2005 Lung clean out in the hospital and then went home and finished home IV's until November 28th, 2005. Also told by Doctor that he cultured Cepecial-Genomovar III for the first time. This was not a good time, a day I will always remember when we were told that.

December 19, 2005 thru December 22, 2005 First surgery for Nose polups/sinuses. On Home IV for 10 days after December 22, 2005.

Janaury 9, 2005 Home IV for a few days and had the debriment from the sinus surgery.

October 2, 2006 thru October 11, 2006 in the hospital for IV cleanout before surgery. October 9, 2006 had another nose polup/sinus surgery.

October 23, 2006 another debriment surgery

March 1, 2007 G-tube surgery - stayed in the hospital until March 2, 2007 and got to go home.

April 26, 2007 Mickey button placed- got to go home the same afternoon.

Thru out his first 5 yrs he had to go to the emergency room 3 times because he had these spells thru the night where he couldn't breath, but we now have a medication on hand for that and haven't had to go back to the er for that reason.

May 2008 ER for stomach pain and found out had a bowel blockage, did go-lighty and got rid better.

These are times I have recorded. It is funny how he had a bad start and has kind of settled down and had a good run at it. We are talking about a possible tune-up this summer before he starts 2nd grade, we will find out in July.

Fourkidsmom

fourkidsmom · Jun 24, 2008

Remember that every child with cf is different. My son has been fortunate this past year and 1/2 that he has not been in the hospital since March 2007. He was in the hospital the first 77 days after birth. He was born 3/14/2001. He had a 4 hour bowel surgery at 6 hours old and was left with a stoma bag anad illeostomy for 2 months until he had failure to thrive. He weighed 9 pounds 10 oz at birth and got down to 8 pounds. He had 2 blood transfusions while in the hospital, numerous x-rays, barrium (bowel tests), cultured puesdo in the hospital at 2 months of age, numerous bronch's, had dehydration and low potassium several times and needed to be put back into ICU to get it back to where it needed to be. There was alot going on at that time, but that is the bulk of it.

(the following are from my blog)October 1, 2001 thru October 12, 2001 he went back into the hospital for a lung cleanout. This would be his 2nd one.

August 2, 2002 he caught Pneumonia and was in for his 3rd cleanout in the hospital.

2002- 2005 He then went thru lots of bowel issues, we finally figured out he could not eat corn, peanuts, or popcorn or he would get blockages. When he got these we would do laxatives- 3 different kinds (lactulose, miralax & go-litely)-- 2 to 3 times daily and enemas sometimes up to 4 times daily. He would cry in pain, not beable to eat, extra extended belly, vomit, not beable to sleep and cry constantly. We had a couple of hospital stays during this time for the bowel issues. Finally he would pass the stool and we avoided surgeries. It was a really hard time thru that not knowing what was going on and he was in such pain and losing weight.

Feb 21 thru March 3, 2005 in the hospital He has a lower left lobe collpse and pneumonia. Went in for a lung clean out. (We got to finish IV's at home for the first time, that was nice!)

In April 2005 his port decided to quit working. It had lasted for 4 yrs since he was 2 months old. So he got a new one put in, we never considered not replacing it. It is a real blessing. I always try to do the least amount of pokes possible for him, sometimes there are nurses that want to stick his arm instead of his port and I throw a fit. Need to protect my little guy....

November 11, 2005 thru November 15, 2005 Lung clean out in the hospital and then went home and finished home IV's until November 28th, 2005. Also told by Doctor that he cultured Cepecial-Genomovar III for the first time. This was not a good time, a day I will always remember when we were told that.

December 19, 2005 thru December 22, 2005 First surgery for Nose polups/sinuses. On Home IV for 10 days after December 22, 2005.

Janaury 9, 2005 Home IV for a few days and had the debriment from the sinus surgery.

October 2, 2006 thru October 11, 2006 in the hospital for IV cleanout before surgery. October 9, 2006 had another nose polup/sinus surgery.

October 23, 2006 another debriment surgery

March 1, 2007 G-tube surgery - stayed in the hospital until March 2, 2007 and got to go home.

April 26, 2007 Mickey button placed- got to go home the same afternoon.

Thru out his first 5 yrs he had to go to the emergency room 3 times because he had these spells thru the night where he couldn't breath, but we now have a medication on hand for that and haven't had to go back to the er for that reason.

May 2008 ER for stomach pain and found out had a bowel blockage, did go-lighty and got rid better.

These are times I have recorded. It is funny how he had a bad start and has kind of settled down and had a good run at it. We are talking about a possible tune-up this summer before he starts 2nd grade, we will find out in July.

Fourkidsmom

fourkidsmom · Jun 24, 2008

Remember that every child with cf is different. My son has been fortunate this past year and 1/2 that he has not been in the hospital since March 2007. He was in the hospital the first 77 days after birth. He was born 3/14/2001. He had a 4 hour bowel surgery at 6 hours old and was left with a stoma bag anad illeostomy for 2 months until he had failure to thrive. He weighed 9 pounds 10 oz at birth and got down to 8 pounds. He had 2 blood transfusions while in the hospital, numerous x-rays, barrium (bowel tests), cultured puesdo in the hospital at 2 months of age, numerous bronch's, had dehydration and low potassium several times and needed to be put back into ICU to get it back to where it needed to be. There was alot going on at that time, but that is the bulk of it.

(the following are from my blog)October 1, 2001 thru October 12, 2001 he went back into the hospital for a lung cleanout. This would be his 2nd one.

August 2, 2002 he caught Pneumonia and was in for his 3rd cleanout in the hospital.

2002- 2005 He then went thru lots of bowel issues, we finally figured out he could not eat corn, peanuts, or popcorn or he would get blockages. When he got these we would do laxatives- 3 different kinds (lactulose, miralax & go-litely)-- 2 to 3 times daily and enemas sometimes up to 4 times daily. He would cry in pain, not beable to eat, extra extended belly, vomit, not beable to sleep and cry constantly. We had a couple of hospital stays during this time for the bowel issues. Finally he would pass the stool and we avoided surgeries. It was a really hard time thru that not knowing what was going on and he was in such pain and losing weight.

Feb 21 thru March 3, 2005 in the hospital He has a lower left lobe collpse and pneumonia. Went in for a lung clean out. (We got to finish IV's at home for the first time, that was nice!)

In April 2005 his port decided to quit working. It had lasted for 4 yrs since he was 2 months old. So he got a new one put in, we never considered not replacing it. It is a real blessing. I always try to do the least amount of pokes possible for him, sometimes there are nurses that want to stick his arm instead of his port and I throw a fit. Need to protect my little guy....

November 11, 2005 thru November 15, 2005 Lung clean out in the hospital and then went home and finished home IV's until November 28th, 2005. Also told by Doctor that he cultured Cepecial-Genomovar III for the first time. This was not a good time, a day I will always remember when we were told that.

December 19, 2005 thru December 22, 2005 First surgery for Nose polups/sinuses. On Home IV for 10 days after December 22, 2005.

Janaury 9, 2005 Home IV for a few days and had the debriment from the sinus surgery.

October 2, 2006 thru October 11, 2006 in the hospital for IV cleanout before surgery. October 9, 2006 had another nose polup/sinus surgery.

October 23, 2006 another debriment surgery

March 1, 2007 G-tube surgery - stayed in the hospital until March 2, 2007 and got to go home.

April 26, 2007 Mickey button placed- got to go home the same afternoon.

Thru out his first 5 yrs he had to go to the emergency room 3 times because he had these spells thru the night where he couldn't breath, but we now have a medication on hand for that and haven't had to go back to the er for that reason.

May 2008 ER for stomach pain and found out had a bowel blockage, did go-lighty and got rid better.

These are times I have recorded. It is funny how he had a bad start and has kind of settled down and had a good run at it. We are talking about a possible tune-up this summer before he starts 2nd grade, we will find out in July.

Fourkidsmom

fourkidsmom · Jun 24, 2008

Remember that every child with cf is different. My son has been fortunate this past year and 1/2 that he has not been in the hospital since March 2007. He was in the hospital the first 77 days after birth. He was born 3/14/2001. He had a 4 hour bowel surgery at 6 hours old and was left with a stoma bag anad illeostomy for 2 months until he had failure to thrive. He weighed 9 pounds 10 oz at birth and got down to 8 pounds. He had 2 blood transfusions while in the hospital, numerous x-rays, barrium (bowel tests), cultured puesdo in the hospital at 2 months of age, numerous bronch's, had dehydration and low potassium several times and needed to be put back into ICU to get it back to where it needed to be. There was alot going on at that time, but that is the bulk of it.
 
 (the following are from my blog)October 1, 2001 thru October 12, 2001 he went back into the hospital for a lung cleanout. This would be his 2nd one.
 
 August 2, 2002 he caught Pneumonia and was in for his 3rd cleanout in the hospital.
 
 2002- 2005 He then went thru lots of bowel issues, we finally figured out he could not eat corn, peanuts, or popcorn or he would get blockages. When he got these we would do laxatives- 3 different kinds (lactulose, miralax & go-litely)-- 2 to 3 times daily and enemas sometimes up to 4 times daily. He would cry in pain, not beable to eat, extra extended belly, vomit, not beable to sleep and cry constantly. We had a couple of hospital stays during this time for the bowel issues. Finally he would pass the stool and we avoided surgeries. It was a really hard time thru that not knowing what was going on and he was in such pain and losing weight.
 
 Feb 21 thru March 3, 2005 in the hospital He has a lower left lobe collpse and pneumonia. Went in for a lung clean out. (We got to finish IV's at home for the first time, that was nice!)
 
 In April 2005 his port decided to quit working. It had lasted for 4 yrs since he was 2 months old. So he got a new one put in, we never considered not replacing it. It is a real blessing. I always try to do the least amount of pokes possible for him, sometimes there are nurses that want to stick his arm instead of his port and I throw a fit. Need to protect my little guy....
 
 November 11, 2005 thru November 15, 2005 Lung clean out in the hospital and then went home and finished home IV's until November 28th, 2005. Also told by Doctor that he cultured Cepecial-Genomovar III for the first time. This was not a good time, a day I will always remember when we were told that.
 
 December 19, 2005 thru December 22, 2005 First surgery for Nose polups/sinuses. On Home IV for 10 days after December 22, 2005.
 
 Janaury 9, 2005 Home IV for a few days and had the debriment from the sinus surgery.
 
 October 2, 2006 thru October 11, 2006 in the hospital for IV cleanout before surgery. October 9, 2006 had another nose polup/sinus surgery.
 
 October 23, 2006 another debriment surgery
 
 March 1, 2007 G-tube surgery - stayed in the hospital until March 2, 2007 and got to go home.
 
 April 26, 2007 Mickey button placed- got to go home the same afternoon.
 
 Thru out his first 5 yrs he had to go to the emergency room 3 times because he had these spells thru the night where he couldn't breath, but we now have a medication on hand for that and haven't had to go back to the er for that reason.
 
 May 2008 ER for stomach pain and found out had a bowel blockage, did go-lighty and got rid better.
 
 These are times I have recorded. It is funny how he had a bad start and has kind of settled down and had a good run at it. We are talking about a possible tune-up this summer before he starts 2nd grade, we will find out in July.
 
 Fourkidsmom

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