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Aiden's update

R

Ratatosk

Administrator
Staff member
I'd also try to get an earlier GI appointment -- DS was born with a bowel obstruction/meconium illeus and when we spoke with the surgeon he explained there was blockage, volvus (stretched out area), dead tissue AND lots of twisting. Is it mucus he's throwing up, bile or greenish stuff. DS vomited bright green stuff shortly after he was born.

There are LOTS of Cfers that are a "good weight" -- symptoms vary from person to person.
 
R

Ratatosk

Administrator
Staff member
I'd also try to get an earlier GI appointment -- DS was born with a bowel obstruction/meconium illeus and when we spoke with the surgeon he explained there was blockage, volvus (stretched out area), dead tissue AND lots of twisting. Is it mucus he's throwing up, bile or greenish stuff. DS vomited bright green stuff shortly after he was born.

There are LOTS of Cfers that are a "good weight" -- symptoms vary from person to person.
 
R

Ratatosk

Administrator
Staff member
I'd also try to get an earlier GI appointment -- DS was born with a bowel obstruction/meconium illeus and when we spoke with the surgeon he explained there was blockage, volvus (stretched out area), dead tissue AND lots of twisting. Is it mucus he's throwing up, bile or greenish stuff. DS vomited bright green stuff shortly after he was born.

There are LOTS of Cfers that are a "good weight" -- symptoms vary from person to person.
 
R

Ratatosk

Administrator
Staff member
I'd also try to get an earlier GI appointment -- DS was born with a bowel obstruction/meconium illeus and when we spoke with the surgeon he explained there was blockage, volvus (stretched out area), dead tissue AND lots of twisting. Is it mucus he's throwing up, bile or greenish stuff. DS vomited bright green stuff shortly after he was born.

There are LOTS of Cfers that are a "good weight" -- symptoms vary from person to person.
 
A

Aidenmurphy

Guest
He had an intussception at 8 mo, and the mucus is just snot but a lot of it. I would like to get into the GI earlier but it's a childrens hopital and it the only childrens hsopital for like 4 states so they are always busy.

The other issue is his ears, he's had 2 sets of tubes and the last set was put in april, he's had drainage in his left (always been his bad ear) for the past 2 weeks and they aren't doing much about it at this point.

He just has always had a lot of mucus that he's not able to process.
 
A

Aidenmurphy

Guest
He had an intussception at 8 mo, and the mucus is just snot but a lot of it. I would like to get into the GI earlier but it's a childrens hopital and it the only childrens hsopital for like 4 states so they are always busy.

The other issue is his ears, he's had 2 sets of tubes and the last set was put in april, he's had drainage in his left (always been his bad ear) for the past 2 weeks and they aren't doing much about it at this point.

He just has always had a lot of mucus that he's not able to process.
 
A

Aidenmurphy

Guest
He had an intussception at 8 mo, and the mucus is just snot but a lot of it. I would like to get into the GI earlier but it's a childrens hopital and it the only childrens hsopital for like 4 states so they are always busy.

The other issue is his ears, he's had 2 sets of tubes and the last set was put in april, he's had drainage in his left (always been his bad ear) for the past 2 weeks and they aren't doing much about it at this point.

He just has always had a lot of mucus that he's not able to process.
 
A

Aidenmurphy

Guest
He had an intussception at 8 mo, and the mucus is just snot but a lot of it. I would like to get into the GI earlier but it's a childrens hopital and it the only childrens hsopital for like 4 states so they are always busy.

The other issue is his ears, he's had 2 sets of tubes and the last set was put in april, he's had drainage in his left (always been his bad ear) for the past 2 weeks and they aren't doing much about it at this point.

He just has always had a lot of mucus that he's not able to process.
 
A

Aidenmurphy

Guest
He had an intussception at 8 mo, and the mucus is just snot but a lot of it. I would like to get into the GI earlier but it's a childrens hopital and it the only childrens hsopital for like 4 states so they are always busy.

The other issue is his ears, he's had 2 sets of tubes and the last set was put in april, he's had drainage in his left (always been his bad ear) for the past 2 weeks and they aren't doing much about it at this point.

He just has always had a lot of mucus that he's not able to process.
 
A

Aidenmurphy

Guest
He had an intussception at 8 mo, and the mucus is just snot but a lot of it. I would like to get into the GI earlier but it's a childrens hopital and it the only childrens hsopital for like 4 states so they are always busy.

The other issue is his ears, he's had 2 sets of tubes and the last set was put in april, he's had drainage in his left (always been his bad ear) for the past 2 weeks and they aren't doing much about it at this point.

He just has always had a lot of mucus that he's not able to process.
 
K

kayleesgrandma

New member
ARRR, "looks too healthy to have CF", makes me want to grab that Dr. by his tie and show him the site! I hate the waiting--darn it<img src="i/expressions/face-icon-small-frown.gif" border="0"> Guess I'll have to just wait with everyone else--can you see the whole crowd of us peering over your should<img src="i/expressions/face-icon-small-wink.gif" border="0">er?
 
K

kayleesgrandma

New member
ARRR, "looks too healthy to have CF", makes me want to grab that Dr. by his tie and show him the site! I hate the waiting--darn it<img src="i/expressions/face-icon-small-frown.gif" border="0"> Guess I'll have to just wait with everyone else--can you see the whole crowd of us peering over your should<img src="i/expressions/face-icon-small-wink.gif" border="0">er?
 
K

kayleesgrandma

New member
ARRR, "looks too healthy to have CF", makes me want to grab that Dr. by his tie and show him the site! I hate the waiting--darn it<img src="i/expressions/face-icon-small-frown.gif" border="0"> Guess I'll have to just wait with everyone else--can you see the whole crowd of us peering over your should<img src="i/expressions/face-icon-small-wink.gif" border="0">er?
 
K

kayleesgrandma

New member
ARRR, "looks too healthy to have CF", makes me want to grab that Dr. by his tie and show him the site! I hate the waiting--darn it<img src="i/expressions/face-icon-small-frown.gif" border="0"> Guess I'll have to just wait with everyone else--can you see the whole crowd of us peering over your should<img src="i/expressions/face-icon-small-wink.gif" border="0">er?
 
K

kayleesgrandma

New member
ARRR, "looks too healthy to have CF", makes me want to grab that Dr. by his tie and show him the site! I hate the waiting--darn it<img src="i/expressions/face-icon-small-frown.gif" border="0"> Guess I'll have to just wait with everyone else--can you see the whole crowd of us peering over your should<img src="i/expressions/face-icon-small-wink.gif" border="0">er?
 
K

kayleesgrandma

New member
ARRR, "looks too healthy to have CF", makes me want to grab that Dr. by his tie and show him the site! I hate the waiting--darn it<img src="i/expressions/face-icon-small-frown.gif" border="0"> Guess I'll have to just wait with everyone else--can you see the whole crowd of us peering over your should<img src="i/expressions/face-icon-small-wink.gif" border="0">er?
 
B

beleache

New member
Hi Rikki, This was a pulmonary dr. at a c/f clinic... I would run not walk to the next dr... We cfers come in all shapes and sizes... (i hope and pray it's not, but if it is, it's better if you know so that you can deal with it the right way) also i would speak directly w/ the gastro about the results of the upper g.i. and if he or she reassures you that it's o.k. to a wait , then maybe i would feel a little better. It sucks having to wait.. Praying for a good outcome.. Sorry, but it pisses me off w/ drs make stupid comments... i was miss dx for 44 yrs. and my sister for 50 yrs.. Let us know if anything changes... Joni 55 y/o f w c/f (and at the moment fat as a cow)
 
B

beleache

New member
Hi Rikki, This was a pulmonary dr. at a c/f clinic... I would run not walk to the next dr... We cfers come in all shapes and sizes... (i hope and pray it's not, but if it is, it's better if you know so that you can deal with it the right way) also i would speak directly w/ the gastro about the results of the upper g.i. and if he or she reassures you that it's o.k. to a wait , then maybe i would feel a little better. It sucks having to wait.. Praying for a good outcome.. Sorry, but it pisses me off w/ drs make stupid comments... i was miss dx for 44 yrs. and my sister for 50 yrs.. Let us know if anything changes... Joni 55 y/o f w c/f (and at the moment fat as a cow)
 
B

beleache

New member
Hi Rikki, This was a pulmonary dr. at a c/f clinic... I would run not walk to the next dr... We cfers come in all shapes and sizes... (i hope and pray it's not, but if it is, it's better if you know so that you can deal with it the right way) also i would speak directly w/ the gastro about the results of the upper g.i. and if he or she reassures you that it's o.k. to a wait , then maybe i would feel a little better. It sucks having to wait.. Praying for a good outcome.. Sorry, but it pisses me off w/ drs make stupid comments... i was miss dx for 44 yrs. and my sister for 50 yrs.. Let us know if anything changes... Joni 55 y/o f w c/f (and at the moment fat as a cow)
 
B

beleache

New member
Hi Rikki, This was a pulmonary dr. at a c/f clinic... I would run not walk to the next dr... We cfers come in all shapes and sizes... (i hope and pray it's not, but if it is, it's better if you know so that you can deal with it the right way) also i would speak directly w/ the gastro about the results of the upper g.i. and if he or she reassures you that it's o.k. to a wait , then maybe i would feel a little better. It sucks having to wait.. Praying for a good outcome.. Sorry, but it pisses me off w/ drs make stupid comments... i was miss dx for 44 yrs. and my sister for 50 yrs.. Let us know if anything changes... Joni 55 y/o f w c/f (and at the moment fat as a cow)
 
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