44/43 sweat test results.......lots of questions???????

clawson5104 · May 30, 2007

Thanks for the replies Nichole and Melissa,

I know everybody is different, I was just curious. I've learned so much here, and still have alot to learn I'm sure. Wade goes to pediatric gastroenterologist tomorrow. I'm looking forward to it in a way, answer questions, get the treatment he needs, but dreading it too, seems like no matter how much good news we get, there's always a catch.......which I guess is what we have to look forward to now. Still thankful though.

Thanks for the compliment Nichole, I shave the little ones heads during the summer, I cant talk the two older ones into it. Cant bribe them either!!!! I like short headed boys, and they're in the long hair phase. my oldest has agreed to get his cut a LITTLE shorter if I get his highlighted....better than nothing. the 2nd one wont budge, I refuse to color his hair in a wild color, so he refuses to get his cut...lol. I keep telling him I didn't want girls, and God gave me the boys I asked for, so what's he trying to do ruin it? He just laughs at me. He's crazy. They both say the girls think their hair is HOT....lol. they haven't even started puberty. although i wonder sometimes...lol.

so thanks again, i'll post more tomorrow after gastro appointment. keep us in your prayers!

clawson5104 · May 30, 2007

Thanks for the replies Nichole and Melissa,

I know everybody is different, I was just curious. I've learned so much here, and still have alot to learn I'm sure. Wade goes to pediatric gastroenterologist tomorrow. I'm looking forward to it in a way, answer questions, get the treatment he needs, but dreading it too, seems like no matter how much good news we get, there's always a catch.......which I guess is what we have to look forward to now. Still thankful though.

Thanks for the compliment Nichole, I shave the little ones heads during the summer, I cant talk the two older ones into it. Cant bribe them either!!!! I like short headed boys, and they're in the long hair phase. my oldest has agreed to get his cut a LITTLE shorter if I get his highlighted....better than nothing. the 2nd one wont budge, I refuse to color his hair in a wild color, so he refuses to get his cut...lol. I keep telling him I didn't want girls, and God gave me the boys I asked for, so what's he trying to do ruin it? He just laughs at me. He's crazy. They both say the girls think their hair is HOT....lol. they haven't even started puberty. although i wonder sometimes...lol.

so thanks again, i'll post more tomorrow after gastro appointment. keep us in your prayers!

clawson5104 · May 30, 2007

Thanks for the replies Nichole and Melissa,

I know everybody is different, I was just curious. I've learned so much here, and still have alot to learn I'm sure. Wade goes to pediatric gastroenterologist tomorrow. I'm looking forward to it in a way, answer questions, get the treatment he needs, but dreading it too, seems like no matter how much good news we get, there's always a catch.......which I guess is what we have to look forward to now. Still thankful though.

Thanks for the compliment Nichole, I shave the little ones heads during the summer, I cant talk the two older ones into it. Cant bribe them either!!!! I like short headed boys, and they're in the long hair phase. my oldest has agreed to get his cut a LITTLE shorter if I get his highlighted....better than nothing. the 2nd one wont budge, I refuse to color his hair in a wild color, so he refuses to get his cut...lol. I keep telling him I didn't want girls, and God gave me the boys I asked for, so what's he trying to do ruin it? He just laughs at me. He's crazy. They both say the girls think their hair is HOT....lol. they haven't even started puberty. although i wonder sometimes...lol.

so thanks again, i'll post more tomorrow after gastro appointment. keep us in your prayers!

clawson5104 · May 30, 2007

Thanks for the replies Nichole and Melissa,

I know everybody is different, I was just curious. I've learned so much here, and still have alot to learn I'm sure. Wade goes to pediatric gastroenterologist tomorrow. I'm looking forward to it in a way, answer questions, get the treatment he needs, but dreading it too, seems like no matter how much good news we get, there's always a catch.......which I guess is what we have to look forward to now. Still thankful though.

Thanks for the compliment Nichole, I shave the little ones heads during the summer, I cant talk the two older ones into it. Cant bribe them either!!!! I like short headed boys, and they're in the long hair phase. my oldest has agreed to get his cut a LITTLE shorter if I get his highlighted....better than nothing. the 2nd one wont budge, I refuse to color his hair in a wild color, so he refuses to get his cut...lol. I keep telling him I didn't want girls, and God gave me the boys I asked for, so what's he trying to do ruin it? He just laughs at me. He's crazy. They both say the girls think their hair is HOT....lol. they haven't even started puberty. although i wonder sometimes...lol.

so thanks again, i'll post more tomorrow after gastro appointment. keep us in your prayers!

clawson5104 · Jun 1, 2007

<img src="i/expressions/face-icon-small-confused.gif" border="0">

AS IF I WASN'T CONFUSED ENOUGH!!!!! AND YES, I WILL PROBABLY END UP WITH A SMALL BOOK BY THE TIME I FINISH THIS MOMENT OF SHARING...SORRY.

I thought I was starting to understand this stuff, well, here I am again....confused even more. We go to Gastro..., He tells me that he did not receive any records, so he will not test Wade for anything, so he doesn't have to go thru more than what he has to. So he asks me ALOT of questions.....which I answered mostly with....sometimes....not all the time. which is how everything is with wade. He asked if we done a 72 hour stool collection w/ food diary. No. so now he says he doesn't know how the pulmonologist came up with wade malabsorbing. If she isn't comparing fat intake, with fat output at the same time, how does she know he is malabsorbing? Yeah, now we gotta do this. feels like i'm starting over. He says all of his digestive issues may even NOT be from cf, but from not eating good. which i've told EVERYONE all along. And we wont know till this test is done, and monitoring his intake and output. Was not happy with the nutritionist trying to convince me to cut wade's juice until he drinks pediasure, or other supplement. then letting him have it. Said good thing I didn't listen. I told him I WILL NOT refuse wade drinks or food of any kind, i'm just so happy he wants something that I'd let him eat dirt if I knew it'd do any good. whether he does the supplements or not. I cannot FORCE him to eat/drink when he doesn't want to. And if he is having these symptoms from cf, cutting the only things he'll drink (juice, gatorade, some water) could really mess up his sodium level. Agrees he definitely has reflux, luckily wade had hiccups and burping with swallowing while we were there....so i wasn't crazy. Gave him DISSOVABLE prevacid....<img src="i/expressions/face-icon-small-smile.gif" border="0"> no more capsules. which were a mistake in the first place, but couldn't change it, insurance. His height and head measurements are great. still not gaining ANY weight. recommended adding carb powder to his foods in the meantime.

My next problem.....gotta tell a story on this one. Last wednesday, wade is snoozing and i break out the stethoscope...checking respirations.....for wheezing or cracking...etc. I notice his heart beat was not regular....so i listen ALL NIGHT....making sure I wasn't hallucinating. I recruit my MIL to confirm I'm not officially insane and trying to find things wrong with wade. confirmed. I call my pediatrician...who is recently too busy.....his reply is I"m on my way out be back next tuesday.....as many docs, hospitals, etc.....somebody would have caught a murmur. and he has never noticed any. so not satisfied i speak with my own doc, who is a friend, she said little ones' heart rate changes alot with their breathing. may even have to do with albuterol. and sounds like a murmur but may not be. if i was concerned take him to er,,, they can clarify if it is or not, and what i would be hearing if not. if i could wait till gastro appointment, dont mention it and see if he hears it on his own, if not then mention it and he can explain what i'm hearing. so i dont mention it to gastro.....and he says''''''were you aware he has a murmur?'""" so i tell him the story, and he says,,, may be innocent, but it's clear enough to be concerned and have a cardiologist check it. if it's not new....it should have been detected sooner, could mean something.....even with weight. could be just innocent murmur. SOOOOO NOW WE'RE DEALING WITH THE HEART. and he said albuterol would not cause a murmur like that.....just speed up heart rate.

In a nutshell, i'm confused as to what symptoms are cf related with wade now, is he maybe malnourished, instead of malabsorbing.....(((not my fault.....i have snacks, and meals offering to him all the time.....and the pregnant dog & I are not having any trouble gaining weight thanks wade refusing to eat and to my " no wasting" issues.))

soooo please pray I may still have a brain cell or two left, I'm fried. I know ALOT of people are dealing with so much more and much worse. just overwhelmed right now. 4 kids, between fights and end of school functions, hubby works away, so i handle EVERYTHING inside and out of this house, on top of wade and his health trivia right now. I dont want to find things wrong. I just wanna know something is wrong when it is, and I wanna know nothing's wrong when it ain't. thanks for letting me vent....good night.

clawson5104 · Jun 1, 2007

<img src="i/expressions/face-icon-small-confused.gif" border="0">

AS IF I WASN'T CONFUSED ENOUGH!!!!! AND YES, I WILL PROBABLY END UP WITH A SMALL BOOK BY THE TIME I FINISH THIS MOMENT OF SHARING...SORRY.

I thought I was starting to understand this stuff, well, here I am again....confused even more. We go to Gastro..., He tells me that he did not receive any records, so he will not test Wade for anything, so he doesn't have to go thru more than what he has to. So he asks me ALOT of questions.....which I answered mostly with....sometimes....not all the time. which is how everything is with wade. He asked if we done a 72 hour stool collection w/ food diary. No. so now he says he doesn't know how the pulmonologist came up with wade malabsorbing. If she isn't comparing fat intake, with fat output at the same time, how does she know he is malabsorbing? Yeah, now we gotta do this. feels like i'm starting over. He says all of his digestive issues may even NOT be from cf, but from not eating good. which i've told EVERYONE all along. And we wont know till this test is done, and monitoring his intake and output. Was not happy with the nutritionist trying to convince me to cut wade's juice until he drinks pediasure, or other supplement. then letting him have it. Said good thing I didn't listen. I told him I WILL NOT refuse wade drinks or food of any kind, i'm just so happy he wants something that I'd let him eat dirt if I knew it'd do any good. whether he does the supplements or not. I cannot FORCE him to eat/drink when he doesn't want to. And if he is having these symptoms from cf, cutting the only things he'll drink (juice, gatorade, some water) could really mess up his sodium level. Agrees he definitely has reflux, luckily wade had hiccups and burping with swallowing while we were there....so i wasn't crazy. Gave him DISSOVABLE prevacid....<img src="i/expressions/face-icon-small-smile.gif" border="0"> no more capsules. which were a mistake in the first place, but couldn't change it, insurance. His height and head measurements are great. still not gaining ANY weight. recommended adding carb powder to his foods in the meantime.

My next problem.....gotta tell a story on this one. Last wednesday, wade is snoozing and i break out the stethoscope...checking respirations.....for wheezing or cracking...etc. I notice his heart beat was not regular....so i listen ALL NIGHT....making sure I wasn't hallucinating. I recruit my MIL to confirm I'm not officially insane and trying to find things wrong with wade. confirmed. I call my pediatrician...who is recently too busy.....his reply is I"m on my way out be back next tuesday.....as many docs, hospitals, etc.....somebody would have caught a murmur. and he has never noticed any. so not satisfied i speak with my own doc, who is a friend, she said little ones' heart rate changes alot with their breathing. may even have to do with albuterol. and sounds like a murmur but may not be. if i was concerned take him to er,,, they can clarify if it is or not, and what i would be hearing if not. if i could wait till gastro appointment, dont mention it and see if he hears it on his own, if not then mention it and he can explain what i'm hearing. so i dont mention it to gastro.....and he says''''''were you aware he has a murmur?'""" so i tell him the story, and he says,,, may be innocent, but it's clear enough to be concerned and have a cardiologist check it. if it's not new....it should have been detected sooner, could mean something.....even with weight. could be just innocent murmur. SOOOOO NOW WE'RE DEALING WITH THE HEART. and he said albuterol would not cause a murmur like that.....just speed up heart rate.

In a nutshell, i'm confused as to what symptoms are cf related with wade now, is he maybe malnourished, instead of malabsorbing.....(((not my fault.....i have snacks, and meals offering to him all the time.....and the pregnant dog & I are not having any trouble gaining weight thanks wade refusing to eat and to my " no wasting" issues.))

soooo please pray I may still have a brain cell or two left, I'm fried. I know ALOT of people are dealing with so much more and much worse. just overwhelmed right now. 4 kids, between fights and end of school functions, hubby works away, so i handle EVERYTHING inside and out of this house, on top of wade and his health trivia right now. I dont want to find things wrong. I just wanna know something is wrong when it is, and I wanna know nothing's wrong when it ain't. thanks for letting me vent....good night.

clawson5104 · Jun 1, 2007

<img src="i/expressions/face-icon-small-confused.gif" border="0">

AS IF I WASN'T CONFUSED ENOUGH!!!!! AND YES, I WILL PROBABLY END UP WITH A SMALL BOOK BY THE TIME I FINISH THIS MOMENT OF SHARING...SORRY.

I thought I was starting to understand this stuff, well, here I am again....confused even more. We go to Gastro..., He tells me that he did not receive any records, so he will not test Wade for anything, so he doesn't have to go thru more than what he has to. So he asks me ALOT of questions.....which I answered mostly with....sometimes....not all the time. which is how everything is with wade. He asked if we done a 72 hour stool collection w/ food diary. No. so now he says he doesn't know how the pulmonologist came up with wade malabsorbing. If she isn't comparing fat intake, with fat output at the same time, how does she know he is malabsorbing? Yeah, now we gotta do this. feels like i'm starting over. He says all of his digestive issues may even NOT be from cf, but from not eating good. which i've told EVERYONE all along. And we wont know till this test is done, and monitoring his intake and output. Was not happy with the nutritionist trying to convince me to cut wade's juice until he drinks pediasure, or other supplement. then letting him have it. Said good thing I didn't listen. I told him I WILL NOT refuse wade drinks or food of any kind, i'm just so happy he wants something that I'd let him eat dirt if I knew it'd do any good. whether he does the supplements or not. I cannot FORCE him to eat/drink when he doesn't want to. And if he is having these symptoms from cf, cutting the only things he'll drink (juice, gatorade, some water) could really mess up his sodium level. Agrees he definitely has reflux, luckily wade had hiccups and burping with swallowing while we were there....so i wasn't crazy. Gave him DISSOVABLE prevacid....<img src="i/expressions/face-icon-small-smile.gif" border="0"> no more capsules. which were a mistake in the first place, but couldn't change it, insurance. His height and head measurements are great. still not gaining ANY weight. recommended adding carb powder to his foods in the meantime.

My next problem.....gotta tell a story on this one. Last wednesday, wade is snoozing and i break out the stethoscope...checking respirations.....for wheezing or cracking...etc. I notice his heart beat was not regular....so i listen ALL NIGHT....making sure I wasn't hallucinating. I recruit my MIL to confirm I'm not officially insane and trying to find things wrong with wade. confirmed. I call my pediatrician...who is recently too busy.....his reply is I"m on my way out be back next tuesday.....as many docs, hospitals, etc.....somebody would have caught a murmur. and he has never noticed any. so not satisfied i speak with my own doc, who is a friend, she said little ones' heart rate changes alot with their breathing. may even have to do with albuterol. and sounds like a murmur but may not be. if i was concerned take him to er,,, they can clarify if it is or not, and what i would be hearing if not. if i could wait till gastro appointment, dont mention it and see if he hears it on his own, if not then mention it and he can explain what i'm hearing. so i dont mention it to gastro.....and he says''''''were you aware he has a murmur?'""" so i tell him the story, and he says,,, may be innocent, but it's clear enough to be concerned and have a cardiologist check it. if it's not new....it should have been detected sooner, could mean something.....even with weight. could be just innocent murmur. SOOOOO NOW WE'RE DEALING WITH THE HEART. and he said albuterol would not cause a murmur like that.....just speed up heart rate.

In a nutshell, i'm confused as to what symptoms are cf related with wade now, is he maybe malnourished, instead of malabsorbing.....(((not my fault.....i have snacks, and meals offering to him all the time.....and the pregnant dog & I are not having any trouble gaining weight thanks wade refusing to eat and to my " no wasting" issues.))

soooo please pray I may still have a brain cell or two left, I'm fried. I know ALOT of people are dealing with so much more and much worse. just overwhelmed right now. 4 kids, between fights and end of school functions, hubby works away, so i handle EVERYTHING inside and out of this house, on top of wade and his health trivia right now. I dont want to find things wrong. I just wanna know something is wrong when it is, and I wanna know nothing's wrong when it ain't. thanks for letting me vent....good night.

clawson5104 · Jun 1, 2007

<img src="i/expressions/face-icon-small-confused.gif" border="0">

AS IF I WASN'T CONFUSED ENOUGH!!!!! AND YES, I WILL PROBABLY END UP WITH A SMALL BOOK BY THE TIME I FINISH THIS MOMENT OF SHARING...SORRY.

I thought I was starting to understand this stuff, well, here I am again....confused even more. We go to Gastro..., He tells me that he did not receive any records, so he will not test Wade for anything, so he doesn't have to go thru more than what he has to. So he asks me ALOT of questions.....which I answered mostly with....sometimes....not all the time. which is how everything is with wade. He asked if we done a 72 hour stool collection w/ food diary. No. so now he says he doesn't know how the pulmonologist came up with wade malabsorbing. If she isn't comparing fat intake, with fat output at the same time, how does she know he is malabsorbing? Yeah, now we gotta do this. feels like i'm starting over. He says all of his digestive issues may even NOT be from cf, but from not eating good. which i've told EVERYONE all along. And we wont know till this test is done, and monitoring his intake and output. Was not happy with the nutritionist trying to convince me to cut wade's juice until he drinks pediasure, or other supplement. then letting him have it. Said good thing I didn't listen. I told him I WILL NOT refuse wade drinks or food of any kind, i'm just so happy he wants something that I'd let him eat dirt if I knew it'd do any good. whether he does the supplements or not. I cannot FORCE him to eat/drink when he doesn't want to. And if he is having these symptoms from cf, cutting the only things he'll drink (juice, gatorade, some water) could really mess up his sodium level. Agrees he definitely has reflux, luckily wade had hiccups and burping with swallowing while we were there....so i wasn't crazy. Gave him DISSOVABLE prevacid....<img src="i/expressions/face-icon-small-smile.gif" border="0"> no more capsules. which were a mistake in the first place, but couldn't change it, insurance. His height and head measurements are great. still not gaining ANY weight. recommended adding carb powder to his foods in the meantime.

My next problem.....gotta tell a story on this one. Last wednesday, wade is snoozing and i break out the stethoscope...checking respirations.....for wheezing or cracking...etc. I notice his heart beat was not regular....so i listen ALL NIGHT....making sure I wasn't hallucinating. I recruit my MIL to confirm I'm not officially insane and trying to find things wrong with wade. confirmed. I call my pediatrician...who is recently too busy.....his reply is I"m on my way out be back next tuesday.....as many docs, hospitals, etc.....somebody would have caught a murmur. and he has never noticed any. so not satisfied i speak with my own doc, who is a friend, she said little ones' heart rate changes alot with their breathing. may even have to do with albuterol. and sounds like a murmur but may not be. if i was concerned take him to er,,, they can clarify if it is or not, and what i would be hearing if not. if i could wait till gastro appointment, dont mention it and see if he hears it on his own, if not then mention it and he can explain what i'm hearing. so i dont mention it to gastro.....and he says''''''were you aware he has a murmur?'""" so i tell him the story, and he says,,, may be innocent, but it's clear enough to be concerned and have a cardiologist check it. if it's not new....it should have been detected sooner, could mean something.....even with weight. could be just innocent murmur. SOOOOO NOW WE'RE DEALING WITH THE HEART. and he said albuterol would not cause a murmur like that.....just speed up heart rate.

In a nutshell, i'm confused as to what symptoms are cf related with wade now, is he maybe malnourished, instead of malabsorbing.....(((not my fault.....i have snacks, and meals offering to him all the time.....and the pregnant dog & I are not having any trouble gaining weight thanks wade refusing to eat and to my " no wasting" issues.))

soooo please pray I may still have a brain cell or two left, I'm fried. I know ALOT of people are dealing with so much more and much worse. just overwhelmed right now. 4 kids, between fights and end of school functions, hubby works away, so i handle EVERYTHING inside and out of this house, on top of wade and his health trivia right now. I dont want to find things wrong. I just wanna know something is wrong when it is, and I wanna know nothing's wrong when it ain't. thanks for letting me vent....good night.

clawson5104 · Jun 1, 2007

<img src="i/expressions/face-icon-small-confused.gif" border="0">

AS IF I WASN'T CONFUSED ENOUGH!!!!! AND YES, I WILL PROBABLY END UP WITH A SMALL BOOK BY THE TIME I FINISH THIS MOMENT OF SHARING...SORRY.

I thought I was starting to understand this stuff, well, here I am again....confused even more. We go to Gastro..., He tells me that he did not receive any records, so he will not test Wade for anything, so he doesn't have to go thru more than what he has to. So he asks me ALOT of questions.....which I answered mostly with....sometimes....not all the time. which is how everything is with wade. He asked if we done a 72 hour stool collection w/ food diary. No. so now he says he doesn't know how the pulmonologist came up with wade malabsorbing. If she isn't comparing fat intake, with fat output at the same time, how does she know he is malabsorbing? Yeah, now we gotta do this. feels like i'm starting over. He says all of his digestive issues may even NOT be from cf, but from not eating good. which i've told EVERYONE all along. And we wont know till this test is done, and monitoring his intake and output. Was not happy with the nutritionist trying to convince me to cut wade's juice until he drinks pediasure, or other supplement. then letting him have it. Said good thing I didn't listen. I told him I WILL NOT refuse wade drinks or food of any kind, i'm just so happy he wants something that I'd let him eat dirt if I knew it'd do any good. whether he does the supplements or not. I cannot FORCE him to eat/drink when he doesn't want to. And if he is having these symptoms from cf, cutting the only things he'll drink (juice, gatorade, some water) could really mess up his sodium level. Agrees he definitely has reflux, luckily wade had hiccups and burping with swallowing while we were there....so i wasn't crazy. Gave him DISSOVABLE prevacid....<img src="i/expressions/face-icon-small-smile.gif" border="0"> no more capsules. which were a mistake in the first place, but couldn't change it, insurance. His height and head measurements are great. still not gaining ANY weight. recommended adding carb powder to his foods in the meantime.

My next problem.....gotta tell a story on this one. Last wednesday, wade is snoozing and i break out the stethoscope...checking respirations.....for wheezing or cracking...etc. I notice his heart beat was not regular....so i listen ALL NIGHT....making sure I wasn't hallucinating. I recruit my MIL to confirm I'm not officially insane and trying to find things wrong with wade. confirmed. I call my pediatrician...who is recently too busy.....his reply is I"m on my way out be back next tuesday.....as many docs, hospitals, etc.....somebody would have caught a murmur. and he has never noticed any. so not satisfied i speak with my own doc, who is a friend, she said little ones' heart rate changes alot with their breathing. may even have to do with albuterol. and sounds like a murmur but may not be. if i was concerned take him to er,,, they can clarify if it is or not, and what i would be hearing if not. if i could wait till gastro appointment, dont mention it and see if he hears it on his own, if not then mention it and he can explain what i'm hearing. so i dont mention it to gastro.....and he says''''''were you aware he has a murmur?'""" so i tell him the story, and he says,,, may be innocent, but it's clear enough to be concerned and have a cardiologist check it. if it's not new....it should have been detected sooner, could mean something.....even with weight. could be just innocent murmur. SOOOOO NOW WE'RE DEALING WITH THE HEART. and he said albuterol would not cause a murmur like that.....just speed up heart rate.

In a nutshell, i'm confused as to what symptoms are cf related with wade now, is he maybe malnourished, instead of malabsorbing.....(((not my fault.....i have snacks, and meals offering to him all the time.....and the pregnant dog & I are not having any trouble gaining weight thanks wade refusing to eat and to my " no wasting" issues.))

soooo please pray I may still have a brain cell or two left, I'm fried. I know ALOT of people are dealing with so much more and much worse. just overwhelmed right now. 4 kids, between fights and end of school functions, hubby works away, so i handle EVERYTHING inside and out of this house, on top of wade and his health trivia right now. I dont want to find things wrong. I just wanna know something is wrong when it is, and I wanna know nothing's wrong when it ain't. thanks for letting me vent....good night.

clawson5104 · Jun 1, 2007

<img src="i/expressions/face-icon-small-confused.gif" border="0">

AS IF I WASN'T CONFUSED ENOUGH!!!!! AND YES, I WILL PROBABLY END UP WITH A SMALL BOOK BY THE TIME I FINISH THIS MOMENT OF SHARING...SORRY.

I thought I was starting to understand this stuff, well, here I am again....confused even more. We go to Gastro..., He tells me that he did not receive any records, so he will not test Wade for anything, so he doesn't have to go thru more than what he has to. So he asks me ALOT of questions.....which I answered mostly with....sometimes....not all the time. which is how everything is with wade. He asked if we done a 72 hour stool collection w/ food diary. No. so now he says he doesn't know how the pulmonologist came up with wade malabsorbing. If she isn't comparing fat intake, with fat output at the same time, how does she know he is malabsorbing? Yeah, now we gotta do this. feels like i'm starting over. He says all of his digestive issues may even NOT be from cf, but from not eating good. which i've told EVERYONE all along. And we wont know till this test is done, and monitoring his intake and output. Was not happy with the nutritionist trying to convince me to cut wade's juice until he drinks pediasure, or other supplement. then letting him have it. Said good thing I didn't listen. I told him I WILL NOT refuse wade drinks or food of any kind, i'm just so happy he wants something that I'd let him eat dirt if I knew it'd do any good. whether he does the supplements or not. I cannot FORCE him to eat/drink when he doesn't want to. And if he is having these symptoms from cf, cutting the only things he'll drink (juice, gatorade, some water) could really mess up his sodium level. Agrees he definitely has reflux, luckily wade had hiccups and burping with swallowing while we were there....so i wasn't crazy. Gave him DISSOVABLE prevacid....<img src="i/expressions/face-icon-small-smile.gif" border="0"> no more capsules. which were a mistake in the first place, but couldn't change it, insurance. His height and head measurements are great. still not gaining ANY weight. recommended adding carb powder to his foods in the meantime.

My next problem.....gotta tell a story on this one. Last wednesday, wade is snoozing and i break out the stethoscope...checking respirations.....for wheezing or cracking...etc. I notice his heart beat was not regular....so i listen ALL NIGHT....making sure I wasn't hallucinating. I recruit my MIL to confirm I'm not officially insane and trying to find things wrong with wade. confirmed. I call my pediatrician...who is recently too busy.....his reply is I"m on my way out be back next tuesday.....as many docs, hospitals, etc.....somebody would have caught a murmur. and he has never noticed any. so not satisfied i speak with my own doc, who is a friend, she said little ones' heart rate changes alot with their breathing. may even have to do with albuterol. and sounds like a murmur but may not be. if i was concerned take him to er,,, they can clarify if it is or not, and what i would be hearing if not. if i could wait till gastro appointment, dont mention it and see if he hears it on his own, if not then mention it and he can explain what i'm hearing. so i dont mention it to gastro.....and he says''''''were you aware he has a murmur?'""" so i tell him the story, and he says,,, may be innocent, but it's clear enough to be concerned and have a cardiologist check it. if it's not new....it should have been detected sooner, could mean something.....even with weight. could be just innocent murmur. SOOOOO NOW WE'RE DEALING WITH THE HEART. and he said albuterol would not cause a murmur like that.....just speed up heart rate.

In a nutshell, i'm confused as to what symptoms are cf related with wade now, is he maybe malnourished, instead of malabsorbing.....(((not my fault.....i have snacks, and meals offering to him all the time.....and the pregnant dog & I are not having any trouble gaining weight thanks wade refusing to eat and to my " no wasting" issues.))

soooo please pray I may still have a brain cell or two left, I'm fried. I know ALOT of people are dealing with so much more and much worse. just overwhelmed right now. 4 kids, between fights and end of school functions, hubby works away, so i handle EVERYTHING inside and out of this house, on top of wade and his health trivia right now. I dont want to find things wrong. I just wanna know something is wrong when it is, and I wanna know nothing's wrong when it ain't. thanks for letting me vent....good night.

JazzysMom · Jun 1, 2007