Surgery AGAIN! (and pool and cf 101)

[Guest guest]

Hi all,

Oh, wow, where to begin...

May 16th we had what was suppose to be our last visit to Children's

Mercy Hospital and Clinics before moving to Ft. Belvoir in July or

August. The cf clinic ordered a chest x-ray for the transfer packet.

It showed a possible hernia in/around Adam's esophagus.

Today we went back to Children's Mercy and had an upper GI performed

and then waited for 2 and one-half hours for a surgeon and/or GI doc

to look at the results and tell if surgery is needed. It is.

Anyone else had a nissen fundoplication and then a hernia? It seems

that Adam's recent bout with a cold that got down into his chest and

turned into croup caused this. They believe that the combination of

the fundo and coughing (stress from his diaphragm on his stomach)

caused a part of his stomach to stretch upward above the fundo area.

It is a situation that they said has to have surgery and could

possibly pinch off or " strangulate " (?) and cause more severe

problems. In fact the last couple of nights we've had to shut off his

nighttime feed 4 hours early because his poor little belly was hard

and maxed out! It's gross, but last night I put in the bolus feeding

tube with the other end open and just let the excess pour back out of

his stomach. He calmed down so quick and went back to sleep so well it

was hard on us to wake him this morning.

I'm so sick of surgeries! The poor kid is only 16 mo old and this

will be his 5th time under. (The first time they didn't yet know he

had cf).

I just had to get that off my chest. I love my little guy and he's

such a trooper! He's so happy all the time (except when we have to

get up at 5am for appts 2 hrs away and then wait for another 2+ hrs

after the appt to get OFFICIAL results and then drive 2 hrs home.

He's a little cranky this evening -- go figure!

RE: the kiddie pool issue -- I wondered the same thing about the

water. So my Dad when to Wal-Mart and got the 10ft diameter pool with

a filter. Is that clean enough for a kid with a mic-key button? I

presume he can go in the water, he takes bathes, the girl in the

video they showed us at the hospital talked about swimming.

RE: CF 101 -- read the above. We are just like you. Adam is 16mo and

he has had primarily GI problems. In fact he's done well fighting off

his colds. Only twice now have we needed antibiotics for SINUS

infection. And this cold (in May) is the first one that they had us

use a nebulizer for -- in fact it was albuterol we used twice a day

for a while. Like I said his cough developed into croup, something

" normal " kids get. To kick it they prescribed pulmocort as a two-day

treatment and it's pretty much gone. My biggest concern during this

last cold was when Adam developed the " barking seal " cough at night.

I've read so many posts about that type of cough. But it's gone. He's

still fighting another sinus infection but that's it now.

Sorry I've taken up so much space. Have a good weekend all. I'll be

packing like made before the movers arrive on Wednesday.

Crystal

mom to Adam 16mo w/cf, le 3 1/2yr nocf

(moving from KS to VA this summer, whenever the Military says we have

a home available....)

[Guest guest]

Crystal,

I took my daughter on Wednesday to Arkansas Childrens Hospital for another Upper

GI because we thought that she was starting to reflux again. In November she

had a Nissen and a GT button placed. Well it turned out that she is not

refluxing, but that she has a para-esophageal hernia. Luckily it is very small

right now, and they said that as long as we keep her from gagging at the end of

her feeds that it should be o-kay. Turns out that she too gets too full during

some of her feeds and we also have to put her decompression tube in to let some

excess run out. So, don't feel like you are alone : )

About the swimming pool, I was concerned also about Piper swimming with her

button, and they said as long as she is in a chlorinated pool that is cleaned

daily, that it would be fine.

I hope that things go well with your son and his surgery, I will be thinking of

ya'll.

Take care,

Katy

Mom to Austin almost 4 w/o CF & Piper 11 months w/CF

Crystal H wrote:

Hi all,

Oh, wow, where to begin...

May 16th we had what was suppose to be our last visit to Children's

Mercy Hospital and Clinics before moving to Ft. Belvoir in July or

August. The cf clinic ordered a chest x-ray for the transfer packet.

It showed a possible hernia in/around Adam's esophagus.

Today we went back to Children's Mercy and had an upper GI performed

and then waited for 2 and one-half hours for a surgeon and/or GI doc

to look at the results and tell if surgery is needed. It is.

Anyone else had a nissen fundoplication and then a hernia? It seems

that Adam's recent bout with a cold that got down into his chest and

turned into croup caused this. They believe that the combination of

the fundo and coughing (stress from his diaphragm on his stomach)

caused a part of his stomach to stretch upward above the fundo area.

It is a situation that they said has to have surgery and could

possibly pinch off or " strangulate " (?) and cause more severe

problems. In fact the last couple of nights we've had to shut off his

nighttime feed 4 hours early because his poor little belly was hard

and maxed out! It's gross, but last night I put in the bolus feeding

tube with the other end open and just let the excess pour back out of

his stomach. He calmed down so quick and went back to sleep so well it

was hard on us to wake him this morning.

I'm so sick of surgeries! The poor kid is only 16 mo old and this

will be his 5th time under. (The first time they didn't yet know he

had cf).

I just had to get that off my chest. I love my little guy and he's

such a trooper! He's so happy all the time (except when we have to

get up at 5am for appts 2 hrs away and then wait for another 2+ hrs

after the appt to get OFFICIAL results and then drive 2 hrs home.

He's a little cranky this evening -- go figure!

RE: the kiddie pool issue -- I wondered the same thing about the

water. So my Dad when to Wal-Mart and got the 10ft diameter pool with

a filter. Is that clean enough for a kid with a mic-key button? I

presume he can go in the water, he takes bathes, the girl in the

video they showed us at the hospital talked about swimming.

RE: CF 101 -- read the above. We are just like you. Adam is 16mo and

he has had primarily GI problems. In fact he's done well fighting off

his colds. Only twice now have we needed antibiotics for SINUS

infection. And this cold (in May) is the first one that they had us

use a nebulizer for -- in fact it was albuterol we used twice a day

for a while. Like I said his cough developed into croup, something

" normal " kids get. To kick it they prescribed pulmocort as a two-day

treatment and it's pretty much gone. My biggest concern during this

last cold was when Adam developed the " barking seal " cough at night.

I've read so many posts about that type of cough. But it's gone. He's

still fighting another sinus infection but that's it now.

Sorry I've taken up so much space. Have a good weekend all. I'll be

packing like made before the movers arrive on Wednesday.

Crystal

mom to Adam 16mo w/cf, le 3 1/2yr nocf

(moving from KS to VA this summer, whenever the Military says we have

a home available....)

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

Katy and Crystal,

Has anyone suggested you slow down the rate of the tube feeds? or give smaller

more frequent feeds? (I have a thing about those night feeds and complications)

This is what we did when was little, we just did a small feed after

breakfast and lunch, then after dinner we did her nebs and PT and put her down

with the last tube feed. That last one never went longer than as hour and one

of us was always with her during all feeds. That way if she started gagging we

could stop everything right away. Just an idea to pass along to your clinic if

you are interested. still has her g-tube and yup they can swim with

it-she has had it since before she was 2. If any water gets in around it-it

shouldn't- it's ok since the stomach is not a sterile environment.

I'm sorry to hear that Adam has to have this surgery. never had a hernia

after the nissan- she just opened her nissan when she was sick (she vomited all

over) I'll be thinking of Adam and your family. I hope all goes well.

Re: Surgery AGAIN! (and pool and cf 101)

Crystal,

I took my daughter on Wednesday to Arkansas Childrens Hospital for another

Upper GI because we thought that she was starting to reflux again. In November

she had a Nissen and a GT button placed. Well it turned out that she is not

refluxing, but that she has a para-esophageal hernia. Luckily it is very small

right now, and they said that as long as we keep her from gagging at the end of

her feeds that it should be o-kay. Turns out that she too gets too full during

some of her feeds and we also have to put her decompression tube in to let some

excess run out. So, don't feel like you are alone : )

About the swimming pool, I was concerned also about Piper swimming with her

button, and they said as long as she is in a chlorinated pool that is cleaned

daily, that it would be fine.

I hope that things go well with your son and his surgery, I will be thinking

of ya'll.

Take care,

Katy

Mom to Austin almost 4 w/o CF & Piper 11 months w/CF

Crystal H wrote:

Hi all,

Oh, wow, where to begin...

May 16th we had what was suppose to be our last visit to Children's

Mercy Hospital and Clinics before moving to Ft. Belvoir in July or

August. The cf clinic ordered a chest x-ray for the transfer packet.

It showed a possible hernia in/around Adam's esophagus.

Today we went back to Children's Mercy and had an upper GI performed

and then waited for 2 and one-half hours for a surgeon and/or GI doc

to look at the results and tell if surgery is needed. It is.

Anyone else had a nissen fundoplication and then a hernia? It seems

that Adam's recent bout with a cold that got down into his chest and

turned into croup caused this. They believe that the combination of

the fundo and coughing (stress from his diaphragm on his stomach)

caused a part of his stomach to stretch upward above the fundo area.

It is a situation that they said has to have surgery and could

possibly pinch off or " strangulate " (?) and cause more severe

problems. In fact the last couple of nights we've had to shut off his

nighttime feed 4 hours early because his poor little belly was hard

and maxed out! It's gross, but last night I put in the bolus feeding

tube with the other end open and just let the excess pour back out of

his stomach. He calmed down so quick and went back to sleep so well it

was hard on us to wake him this morning.

I'm so sick of surgeries! The poor kid is only 16 mo old and this

will be his 5th time under. (The first time they didn't yet know he

had cf).

I just had to get that off my chest. I love my little guy and he's

such a trooper! He's so happy all the time (except when we have to

get up at 5am for appts 2 hrs away and then wait for another 2+ hrs

after the appt to get OFFICIAL results and then drive 2 hrs home.

He's a little cranky this evening -- go figure!

RE: the kiddie pool issue -- I wondered the same thing about the

water. So my Dad when to Wal-Mart and got the 10ft diameter pool with

a filter. Is that clean enough for a kid with a mic-key button? I

presume he can go in the water, he takes bathes, the girl in the

video they showed us at the hospital talked about swimming.

RE: CF 101 -- read the above. We are just like you. Adam is 16mo and

he has had primarily GI problems. In fact he's done well fighting off

his colds. Only twice now have we needed antibiotics for SINUS

infection. And this cold (in May) is the first one that they had us

use a nebulizer for -- in fact it was albuterol we used twice a day

for a while. Like I said his cough developed into croup, something

" normal " kids get. To kick it they prescribed pulmocort as a two-day

treatment and it's pretty much gone. My biggest concern during this

last cold was when Adam developed the " barking seal " cough at night.

I've read so many posts about that type of cough. But it's gone. He's

still fighting another sinus infection but that's it now.

Sorry I've taken up so much space. Have a good weekend all. I'll be

packing like made before the movers arrive on Wednesday.

Crystal

mom to Adam 16mo w/cf, le 3 1/2yr nocf

(moving from KS to VA this summer, whenever the Military says we have

a home available....)

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

,

Our Pulmonoligist wants Piper to feed every three to four hours at a volume of

no less than 8 oz. On my own I did start breaking up her feeds. I'll give her

say 6 oz, and then an hour later I'll give her four, that way she is actually

consuming more calories and ounces than before. The down side is that it seems

like she is eating all day long. We don't do night feeds, I let her sleep, and

we aren't on a pump, we do bolus feeds. Since I started giving her less more

often her gagging really seems to be under control.

Thanks,

Katy

Mom to Austin almost 4 w/o CF & Piper 11 months w/CF

ANDREA FITTING wrote:

Katy and Crystal,

Has anyone suggested you slow down the rate of the tube feeds? or give smaller

more frequent feeds? (I have a thing about those night feeds and complications)

This is what we did when was little, we just did a small feed after

breakfast and lunch, then after dinner we did her nebs and PT and put her down

with the last tube feed. That last one never went longer than as hour and one of

us was always with her during all feeds. That way if she started gagging we

could stop everything right away. Just an idea to pass along to your clinic if

you are interested. still has her g-tube and yup they can swim with

it-she has had it since before she was 2. If any water gets in around it-it

shouldn't- it's ok since the stomach is not a sterile environment.

I'm sorry to hear that Adam has to have this surgery. never had a hernia

after the nissan- she just opened her nissan when she was sick (she vomited all

over) I'll be thinking of Adam and your family. I hope all goes well.

Re: Surgery AGAIN! (and pool and cf 101)

Crystal,

I took my daughter on Wednesday to Arkansas Childrens Hospital for another Upper

GI because we thought that she was starting to reflux again. In November she had

a Nissen and a GT button placed. Well it turned out that she is not refluxing,

but that she has a para-esophageal hernia. Luckily it is very small right now,

and they said that as long as we keep her from gagging at the end of her feeds

that it should be o-kay. Turns out that she too gets too full during some of her

feeds and we also have to put her decompression tube in to let some excess run

out. So, don't feel like you are alone : )

About the swimming pool, I was concerned also about Piper swimming with her

button, and they said as long as she is in a chlorinated pool that is cleaned

daily, that it would be fine.

I hope that things go well with your son and his surgery, I will be thinking of

ya'll.

Take care,

Katy

Mom to Austin almost 4 w/o CF & Piper 11 months w/CF

Crystal H wrote:

Hi all,

Oh, wow, where to begin...

May 16th we had what was suppose to be our last visit to Children's

Mercy Hospital and Clinics before moving to Ft. Belvoir in July or

August. The cf clinic ordered a chest x-ray for the transfer packet.

It showed a possible hernia in/around Adam's esophagus.

Today we went back to Children's Mercy and had an upper GI performed

and then waited for 2 and one-half hours for a surgeon and/or GI doc

to look at the results and tell if surgery is needed. It is.

Anyone else had a nissen fundoplication and then a hernia? It seems

that Adam's recent bout with a cold that got down into his chest and

turned into croup caused this. They believe that the combination of

the fundo and coughing (stress from his diaphragm on his stomach)

caused a part of his stomach to stretch upward above the fundo area.

It is a situation that they said has to have surgery and could

possibly pinch off or " strangulate " (?) and cause more severe

problems. In fact the last couple of nights we've had to shut off his

nighttime feed 4 hours early because his poor little belly was hard

and maxed out! It's gross, but last night I put in the bolus feeding

tube with the other end open and just let the excess pour back out of

his stomach. He calmed down so quick and went back to sleep so well it

was hard on us to wake him this morning.

I'm so sick of surgeries! The poor kid is only 16 mo old and this

will be his 5th time under. (The first time they didn't yet know he

had cf).

I just had to get that off my chest. I love my little guy and he's

such a trooper! He's so happy all the time (except when we have to

get up at 5am for appts 2 hrs away and then wait for another 2+ hrs

after the appt to get OFFICIAL results and then drive 2 hrs home.

He's a little cranky this evening -- go figure!

RE: the kiddie pool issue -- I wondered the same thing about the

water. So my Dad when to Wal-Mart and got the 10ft diameter pool with

a filter. Is that clean enough for a kid with a mic-key button? I

presume he can go in the water, he takes bathes, the girl in the

video they showed us at the hospital talked about swimming.

RE: CF 101 -- read the above. We are just like you. Adam is 16mo and

he has had primarily GI problems. In fact he's done well fighting off

his colds. Only twice now have we needed antibiotics for SINUS

infection. And this cold (in May) is the first one that they had us

use a nebulizer for -- in fact it was albuterol we used twice a day

for a while. Like I said his cough developed into croup, something

" normal " kids get. To kick it they prescribed pulmocort as a two-day

treatment and it's pretty much gone. My biggest concern during this

last cold was when Adam developed the " barking seal " cough at night.

I've read so many posts about that type of cough. But it's gone. He's

still fighting another sinus infection but that's it now.

Sorry I've taken up so much space. Have a good weekend all. I'll be

packing like made before the movers arrive on Wednesday.

Crystal

mom to Adam 16mo w/cf, le 3 1/2yr nocf

(moving from KS to VA this summer, whenever the Military says we have

a home available....)

-------------------------------------------

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

------------------------------------

[Guest guest]

,

Our GI doc wanted the feedings to be at night and for Adam to eat

" normally " during the day. Just in the last week, I made the decision

myself to drop his nighttime feeds in half and still we have

problems.

I'm toying with the idea of skipping tonight totally.

Crystal

> Hi all,

>

> Oh, wow, where to begin...

>

> May 16th we had what was suppose to be our last visit to

Children's

> Mercy Hospital and Clinics before moving to Ft. Belvoir in July

or

> August. The cf clinic ordered a chest x-ray for the transfer

packet.

> It showed a possible hernia in/around Adam's esophagus.

>

> Today we went back to Children's Mercy and had an upper GI

performed

> and then waited for 2 and one-half hours for a surgeon and/or GI

doc

> to look at the results and tell if surgery is needed. It is.

>

> Anyone else had a nissen fundoplication and then a hernia? It

seems

> that Adam's recent bout with a cold that got down into his chest

and

> turned into croup caused this. They believe that the combination

of

> the fundo and coughing (stress from his diaphragm on his stomach)

> caused a part of his stomach to stretch upward above the fundo

area.

> It is a situation that they said has to have surgery and could

> possibly pinch off or " strangulate " (?) and cause more severe

> problems. In fact the last couple of nights we've had to shut off

his

> nighttime feed 4 hours early because his poor little belly was

hard

> and maxed out! It's gross, but last night I put in the bolus

feeding

> tube with the other end open and just let the excess pour back

out

of

> his stomach. He calmed down so quick and went back to sleep so

well it

> was hard on us to wake him this morning.

>

> I'm so sick of surgeries! The poor kid is only 16 mo old and this

> will be his 5th time under. (The first time they didn't yet know

he

> had cf).

>

> I just had to get that off my chest. I love my little guy and

he's

> such a trooper! He's so happy all the time (except when we have to

> get up at 5am for appts 2 hrs away and then wait for another 2+

hrs

> after the appt to get OFFICIAL results and then drive 2 hrs home.

> He's a little cranky this evening -- go figure!

>

> RE: the kiddie pool issue -- I wondered the same thing about the

> water. So my Dad when to Wal-Mart and got the 10ft diameter pool

with

> a filter. Is that clean enough for a kid with a mic-key button? I

> presume he can go in the water, he takes bathes, the girl in the

> video they showed us at the hospital talked about swimming.

>

> RE: CF 101 -- read the above. We are just like you. Adam is 16mo

and

> he has had primarily GI problems. In fact he's done well fighting

off

> his colds. Only twice now have we needed antibiotics for SINUS

> infection. And this cold (in May) is the first one that they had

us

> use a nebulizer for -- in fact it was albuterol we used twice a

day

> for a while. Like I said his cough developed into croup,

something

> " normal " kids get. To kick it they prescribed pulmocort as a

two-day

> treatment and it's pretty much gone. My biggest concern during

this

> last cold was when Adam developed the " barking seal " cough at

night.

> I've read so many posts about that type of cough. But it's gone.

He's

> still fighting another sinus infection but that's it now.

>

> Sorry I've taken up so much space. Have a good weekend all. I'll

be

> packing like made before the movers arrive on Wednesday.

>

> Crystal

> mom to Adam 16mo w/cf, le 3 1/2yr nocf

> (moving from KS to VA this summer, whenever the Military says we

have

> a home available....)

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Crystal,

Yeah, they tried to get me to do night feeds too. My problem with it was that

food was being forced into her stomach with no supervision. Considering how

much gagged and needed to be " vented " by putting the open tube in to let

some of the formula and excess gas out, she and I both would have been up all

night. I was mostly concerned about the Nissan. They can " break through " the

Nissan and have other complications like the herniated stomach, if they are

still refluxing or gagging a lot. broke through her Nissan within about

6 months of getting it. If they are getting a tube feed and break through the

Nissan they can aspirate very easily. I was very concerned about the

possibility of lung damage. So, I put my foot down about it. It is an

alternative to the night feeds, if you are interested and the doc OK's it. I

know most people do night feeds with no problem but I'm just not comfortable

with it. All of 's feeds were after meals or snacks where she ate

" normally " (of course normal for her was next to nothing). I hope you are able

to get it worked out.

Re: Surgery AGAIN! (and pool and cf 101)

,

Our GI doc wanted the feedings to be at night and for Adam to eat

" normally " during the day. Just in the last week, I made the decision

myself to drop his nighttime feeds in half and still we have

problems.

I'm toying with the idea of skipping tonight totally.

Crystal

> Hi all,

>

> Oh, wow, where to begin...

>

> May 16th we had what was suppose to be our last visit to

Children's

> Mercy Hospital and Clinics before moving to Ft. Belvoir in July

or

> August. The cf clinic ordered a chest x-ray for the transfer

packet.

> It showed a possible hernia in/around Adam's esophagus.

>

> Today we went back to Children's Mercy and had an upper GI

performed

> and then waited for 2 and one-half hours for a surgeon and/or GI

doc

> to look at the results and tell if surgery is needed. It is.

>

> Anyone else had a nissen fundoplication and then a hernia? It

seems

> that Adam's recent bout with a cold that got down into his chest

and

> turned into croup caused this. They believe that the combination

of

> the fundo and coughing (stress from his diaphragm on his stomach)

> caused a part of his stomach to stretch upward above the fundo

area.

> It is a situation that they said has to have surgery and could

> possibly pinch off or " strangulate " (?) and cause more severe

> problems. In fact the last couple of nights we've had to shut off

his

> nighttime feed 4 hours early because his poor little belly was

hard

> and maxed out! It's gross, but last night I put in the bolus

feeding

> tube with the other end open and just let the excess pour back

out

of

> his stomach. He calmed down so quick and went back to sleep so

well it

> was hard on us to wake him this morning.

>

> I'm so sick of surgeries! The poor kid is only 16 mo old and this

> will be his 5th time under. (The first time they didn't yet know

he

> had cf).

>

> I just had to get that off my chest. I love my little guy and

he's

> such a trooper! He's so happy all the time (except when we have to

> get up at 5am for appts 2 hrs away and then wait for another 2+

hrs

> after the appt to get OFFICIAL results and then drive 2 hrs home.

> He's a little cranky this evening -- go figure!

>

> RE: the kiddie pool issue -- I wondered the same thing about the

> water. So my Dad when to Wal-Mart and got the 10ft diameter pool

with

> a filter. Is that clean enough for a kid with a mic-key button? I

> presume he can go in the water, he takes bathes, the girl in the

> video they showed us at the hospital talked about swimming.

>

> RE: CF 101 -- read the above. We are just like you. Adam is 16mo

and

> he has had primarily GI problems. In fact he's done well fighting

off

> his colds. Only twice now have we needed antibiotics for SINUS

> infection. And this cold (in May) is the first one that they had

us

> use a nebulizer for -- in fact it was albuterol we used twice a

day

> for a while. Like I said his cough developed into croup,

something

> " normal " kids get. To kick it they prescribed pulmocort as a

two-day

> treatment and it's pretty much gone. My biggest concern during

this

> last cold was when Adam developed the " barking seal " cough at

night.

> I've read so many posts about that type of cough. But it's gone.

He's

> still fighting another sinus infection but that's it now.

>

> Sorry I've taken up so much space. Have a good weekend all. I'll

be

> packing like made before the movers arrive on Wednesday.

>

> Crystal

> mom to Adam 16mo w/cf, le 3 1/2yr nocf

> (moving from KS to VA this summer, whenever the Military says we

have

> a home available....)

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>

[Guest guest]

Oops, I forgot to tell ya that I have a section on our site called " Adventures

in G-Tubeland " http://groups.msn.com/TeamJane

Re: Surgery AGAIN! (and pool and cf 101)

,

Our GI doc wanted the feedings to be at night and for Adam to eat

" normally " during the day. Just in the last week, I made the decision

myself to drop his nighttime feeds in half and still we have

problems.

I'm toying with the idea of skipping tonight totally.

Crystal

> Hi all,

>

> Oh, wow, where to begin...

>

> May 16th we had what was suppose to be our last visit to

Children's

> Mercy Hospital and Clinics before moving to Ft. Belvoir in July

or

> August. The cf clinic ordered a chest x-ray for the transfer

packet.

> It showed a possible hernia in/around Adam's esophagus.

>

> Today we went back to Children's Mercy and had an upper GI

performed

> and then waited for 2 and one-half hours for a surgeon and/or GI

doc

> to look at the results and tell if surgery is needed. It is.

>

> Anyone else had a nissen fundoplication and then a hernia? It

seems

> that Adam's recent bout with a cold that got down into his chest

and

> turned into croup caused this. They believe that the combination

of

> the fundo and coughing (stress from his diaphragm on his stomach)

> caused a part of his stomach to stretch upward above the fundo

area.

> It is a situation that they said has to have surgery and could

> possibly pinch off or " strangulate " (?) and cause more severe

> problems. In fact the last couple of nights we've had to shut off

his

> nighttime feed 4 hours early because his poor little belly was

hard

> and maxed out! It's gross, but last night I put in the bolus

feeding

> tube with the other end open and just let the excess pour back

out

of

> his stomach. He calmed down so quick and went back to sleep so

well it

> was hard on us to wake him this morning.

>

> I'm so sick of surgeries! The poor kid is only 16 mo old and this

> will be his 5th time under. (The first time they didn't yet know

he

> had cf).

>

> I just had to get that off my chest. I love my little guy and

he's

> such a trooper! He's so happy all the time (except when we have to

> get up at 5am for appts 2 hrs away and then wait for another 2+

hrs

> after the appt to get OFFICIAL results and then drive 2 hrs home.

> He's a little cranky this evening -- go figure!

>

> RE: the kiddie pool issue -- I wondered the same thing about the

> water. So my Dad when to Wal-Mart and got the 10ft diameter pool

with

> a filter. Is that clean enough for a kid with a mic-key button? I

> presume he can go in the water, he takes bathes, the girl in the

> video they showed us at the hospital talked about swimming.

>

> RE: CF 101 -- read the above. We are just like you. Adam is 16mo

and

> he has had primarily GI problems. In fact he's done well fighting

off

> his colds. Only twice now have we needed antibiotics for SINUS

> infection. And this cold (in May) is the first one that they had

us

> use a nebulizer for -- in fact it was albuterol we used twice a

day

> for a while. Like I said his cough developed into croup,

something

> " normal " kids get. To kick it they prescribed pulmocort as a

two-day

> treatment and it's pretty much gone. My biggest concern during

this

> last cold was when Adam developed the " barking seal " cough at

night.

> I've read so many posts about that type of cough. But it's gone.

He's

> still fighting another sinus infection but that's it now.

>

> Sorry I've taken up so much space. Have a good weekend all. I'll

be

> packing like made before the movers arrive on Wednesday.

>

> Crystal

> mom to Adam 16mo w/cf, le 3 1/2yr nocf

> (moving from KS to VA this summer, whenever the Military says we

have

> a home available....)

>

>

>

> -------------------------------------------

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

> ------------------------------------

>

>

>