Re: What are the ABC's of the g-tube?

[Guest guest]

,

Check out the web site http://www.kidswithtubes.org/ there is a lot

of good info here. My reply is in CAPS in your text. , Dad

to Grant

>

> Dear Friends,

>

> Well, next Friday Connor gets the g-tube. Today it just dawned on

> me that I have a lot of specific questions that I hope you all

will

> respond to in the next few days. I have to admit that in the past

I

> always skipped the posts that dealt with g-tubes, pyroplasty

surgery

> and the nissen fundoplication. Connor was an " eater " and we

didn't

> have to learn that. Well, now, I have to play catch up.

>

> So, in the Spirit of Letterman (Drum Roll Please!!!), Here

are

> my Top 10 Questions on how to rearrange your family's life around

a

> g-tube fed child.

>

> 1. Connor is a belly sleeper. Will he have to change this for the

g-

> tube to work properly? Will I have to manipulate his crib in any

way

> to assist the feed?

I DON'T HAVE A LOT OF TIME TO REPLY SO PLEASE FORGIVE THE BREVITY OF

MY ANSWERS.

CHANGING THE CRIB WAS NOT NECESSARY FOR US, THEY FIND THEIR OWN

COMFORT POSITION. WHEN I WATCH GRANT ROLL IN HIS SLEEP HE WILL

REACH DOWN AND GRAB HIS TUBE WHILE HE ROLLS SO IT DOESN'T PULL –

THESE KIDS ADAPT FAST.

>

> 2. How long does it usually take for the surgery site to heal?

ABOUT A WEEK, I CANT REMEMBER THE TYPE OF TUBE YOU GET RIGHT AWAY

BUT IT HAS A TUBE ATTACHED TO IT PERMINATLY, AFTER A MONTH OR SO

THEY WILL REPLACE IT WITH A BUTTON WHICH OFFERS A LOT MORE

FLEXABILITY.

> 3. How do you handle infection at the site.

BAD INFECTION=ORAL ANTIBIOTIC

MINOR INFECTION=TOPICAL CREAM ANTIBITIC (BACTOBAN)

> 4. How do you handle tissue granulation at the site?

GRANT'S HAS ALWAYS BEEN BAD.

THERE ARE STEROID CREAMS TO PUT ON TO REDUCE THE TISSUE, OTHERWISE

YOU CAUTERIZE IT WITH A SILVER NITRATE STICK – AFTER USING A NUMBING

CREAM,

> 5. Is it Prevacid or Prilosec that you can get in a liquid form

that

> can be injected into the tube?

PREVACID CAN BE FORMULATED BUT THEY HAVE THE SOLUTAB NOW, IF CONNER

WOULD TAKE THAT IT'S EASY, FOMULATED PREVACID HAS TO BE REFRIGERATED.

> 6. If the slow feeds overnight cause a lot of vomiting, would that

> indicate that Connor needs a Pyroplasty or the NF procedure?

THIS IS VERY COMPLICATED, IT COULD INDICATE THE NEED FOR CORRECTIVE

SURGURY BUT ONLY THE SCANS CAN TELL FOR SURE.

> 7. How will the feeds affect his oral feeding? We worked for 2

1/2

> long years to get Connor's mouth desensitized and get him to

> lateralize and chew his food. Even though the malocclusion of his

> jaw is prohibiting full digestion of his food, AT LEAST WE CAN GET

> IT IN HIM! Is he going to lose this function due to a lack of

> hunger?

ONLY TIME WILL TELL, BEING AWARE THAT HE MAY IS REALLY PROBEBLY THE

MOST IMPORTANT GUARD AGAINST IT. MOST ALL THE TUBE FED KIDS STILL

EAT SO THE OPPORTUNITY TO WORK WITH HIM WILL REMAIN. WE HAVE GRANT

CHEW GUM REGULARLY TO HELP MAINTAIN FUNCTION.

>

> 8. When do you get to take the tube out? What medical criteria

> determines that your child is thriving enough without it?

I'LL LET YOU KNOW IN THE FUTURE, OTHERS WILL HAVE TO FILL IN HERE.

> 9. What do I tell my son? He's two and a half and very self

aware.

> In a few days he's going through a surgery that's going to change

> his life for the better (we hope). What do I tell him?

???????????? PRAY FOR WISDOM ???????????????

> 10. As many of you know, Connor lives life at full throtle! He's

> all " boy. " I remember a post from Judith about her son popping

out

> the tube while playing at leaping lizards. Besides not sliding on

> your belly, what other things should Connor be careful of. (I.E.

> The playgroud, wrestling with Daddy and brothers, karate,

> gymnastics, etc, etc, etc.) I don't want to put my son in a

bubble,

> but I know that I don't want to deal with a popped out g-tube

> either. You know the ole' saying, " An ounce of prevention... "

GRANT IS JUST THE SAME, WE HAVE HAD A FEW MINI " HEAT ATTCAKS "

WATCHING HIM IN SOME OF HIS ACTIVITIES. ONCE HE HAS A BUTTON PLACED

IT IS A LOT EASIER. WE DRESSED GRANT IN COVERALLS FROM 2-3 YEARS OF

AGE, THEY PROTECT THE ABDOMEN WELL. I AM CONVINCED THE REASON GRANT

HAS A LOT OF GRANULATION TISSUE ISSUES IS FROM HIS CONSTANT MOTION.

> So, that's all for now. I'm sure as I obsess about this for the

> rest of the day, I'll probably come up with at least another

twenty

> questions. I would like to thank Maloy in Norfolk and Alison in

> andria for helping me thus far. Your calmness has been

greatly

> appreciated (grin).

>

> Hugs to All!

>

>

> Mom to Graham 8 ADD; Cameron 5; Connor 2 IUGR RSS Kyphosis,

> Asymmetry, Periactin, Prevacid, Zantac Nutropin in two weeks; g-

tube

> in 6 days.

[Guest guest]

Hi ,

Here are some answers for you. Hope this helps. Best of luck with

the surgery next week.

> 1. Connor is a belly sleeper. Will he have to change this for the

g-

> tube to work properly? Will I have to manipulate his crib in any

way

> to assist the feed?

COLIN SLEEPS ON HIS BACK, I DO THINK IT WOULD BE DIFFICULT TO SLEEP

ON YOUR TUMMY WITH THE MICKEY BUTTON. HE WILL PROBABLY MAKE THIS

CHANGE NATURALLY AS HIS TUMMY WILL BE SENSITIVE FOR AWHILE AFTER

SURGERY. COLIN IS IN A TWIN BED AND WE HAVE THE PUMP ATTACHED TO THE

WALL IN THE MIDDLE OF THE BED WITH A HOOK FOR THE BAG OF FORMULA.

THIS WORKS REALLY WELL FOR US. WE HAD AN IV POLE WHEN HE WAS IN A

CRIB.

>

> 2. How long does it usually take for the surgery site to heal?

COLIN'S SURGERY WAS AT AGE 7 MO. AND HE HEALED VERY QUICKLY. THEY

ONLY GAVE HIM TYLENOL FOR PAIN ONCE HE WAS OUT OF THE HOSPITAL AND

HE DID VERY WELL.

>

> 3. How do you handle infection at the site.

WE HAVEN'T HAD THIS PROBLEM

>

> 4. How do you handle tissue granulation at the site?

NOT AN ISSUE

>

> 5. Is it Prevacid or Prilosec that you can get in a liquid form

that

> can be injected into the tube?

WE USED TO USE PRILOSEC MADE INTO A LIQUID SUSPENSION BUT RECENTLY

CHANGED TO PREVACID SOLUTABS. I DISSOLVE THESE IN WATER AND GIVE

THROUGH THE TUBE WITH HIS PERIACTIN.

>

> 6. If the slow feeds overnight cause a lot of vomiting, would that

> indicate that Connor needs a Pyroplasty or the NF procedure?

COLIN ONLY VOMITED AT NIGHT WHEN HE WAS SICK WITH A COUGH. HIS PUMP

IS SET AT 70ML PER HOUR DURING THE NIGHT AND HE TOLERATES IT FINE.

HE HAS NOT HAD A PYLOROPLASTY.

>

> 7. How will the feeds affect his oral feeding? We worked for 2

1/2

> long years to get Connor's mouth desensitized and get him to

> lateralize and chew his food. Even though the malocclusion of his

> jaw is prohibiting full digestion of his food, AT LEAST WE CAN GET

> IT IN HIM! Is he going to lose this function due to a lack of

> hunger?

WELL WE HAVE GONE THE OPPOSITE ROUTE STARTING WITH THE TUBE AND

GOING TO ORAL FEEDS. NOW COLIN EATS DURING THE DAY WITH ONE BOLUS

AFTER LUNCH AND THE REST COMES AT NIGHT. HIS PUMP RUNS FROM 8PM TO

4AM AND IT ALLOWS HIM ENOUGH TIME TO GET HUNGRY FOR BREAKFAST.

THOUGH IT ISN'T HIS BEST MEAL OF THE DAY. USUALLY HE IS FED THROUGH

THE TUBE AFTER A MEAL SO IT DOESN'T INTERFERE WITH HUNGER AT THE

NEXT MEAL. I WOULD THINK SINCE CONNOR EATS NOW THAT HE WILL CONTINUE

TO DO SO.

>

> 8. When do you get to take the tube out? What medical criteria

> determines that your child is thriving enough without it?

WHEN HE IS ABLE TO GAIN WEIGHT WITHOUT USING THE TUBE FOR 6 MONTHS.

I FORSEE THIS HAPPENING AROUND AGE 7???? HE IS 4 NOW AND WE STILL

HAVE A LONG WAY TO GO. I AM NOT IN A HURRY TO GET RID OF IT BECAUSE

IT MAKES OUR LIVES SO MUCH EASIER NOT HAVING TO STRESS OVER HOW MUCH

HE EATS AT EACH MEAL.

>

> 9. What do I tell my son? He's two and a half and very self

aware.

> In a few days he's going through a surgery that's going to change

> his life for the better (we hope). What do I tell him?

THIS IS TOUGH. HOPEFULLY SOME OTHERS CAN OFFER ANSWERS FOR YOU.

JUDITH'S SON GOT HIS TUBE AROUND THE SAME AGE AND MAYBE SHE WILL

RESPOND.

>

> 10. As many of you know, Connor lives life at full throtle! He's

> all " boy. " I remember a post from Judith about her son popping

out

> the tube while playing at leaping lizards. Besides not sliding on

> your belly, what other things should Connor be careful of. (I.E.

> The playgroud, wrestling with Daddy and brothers, karate,

> gymnastics, etc, etc, etc.) I don't want to put my son in a

bubble,

> but I know that I don't want to deal with a popped out g-tube

> either. You know the ole' saying, " An ounce of prevention... "

COLIN IS A VERY ACTIVE GUY TOO AND WE HAVE HAD NO LIMITATIONS FOR

COLIN WITH THE BUTTON. HE DOES EVERYTHING THAT HIS TWIN SISTER DOES.

AND KNOCK ON WOOD, WE'VE NEVER HAD A BUTTON BREAK AND HE HAS HAD IT

FOR ALMOST 4 YEARS. THE ONLY THING HE CAN'T DO IS THE SLIP AND SLIDE

ON HIS TUMMY, BUT HE FIGURED OUT TO DO IT ON HIS KNEES.

Colin (RSS, gtube) and Hayden - 4 year 2 mo. twins

Grant - 13.5 mo.

[Guest guest]

Dear

I'll try and answer the questions that I can add too rather than go

over the same suggestions. Charlie had a Gtube placed at 14mths (6

months ago. He has had a couple of bouts of granulation tissue, the

first just after surgery, the second when his button came out and

had to be replaced in day surgery and occasionally if it leaks a

bit, granulation tissue will build up. The BEST thing we have found

is copper sulphate crystals (rub or hold for a few seconds on

granulation tissue and it won't harm other skin around it). Tim is a

high school tissue and he can get this really easily in the science

lab, so you could try schools or chemists. We also used mylanta

mixed as a powder to alleviate acid build up after surgery.

Charlie has had no infection and the site looks great 99% of the

time.

The only time Charlie's button has " popped out " was when he had a

very bad cough and coughed constantly all night, this decreased the

water in the balloon and the button came out. If he has a cough we

always check the amount of water in the balloon before he goes to

bed.

Charlie has been much more resiliant to illness and more energetic

and happy since he has been getting more calories via the g tube.

Hope it all goes really well -

Alison in Sydney ( 3yrs, Charlie 20mths RSS G Tube Zantac just

about to start GH)

[Guest guest]

,

It looks like you've gotten a lot of responses. I'll try to add my 2 cents

without being too

repetitive.

> 1. Connor is a belly sleeper. Will he have to change this for the g-

> tube to work properly? Will I have to manipulate his crib in any way

> to assist the feed?

MY SON SLEEPS IN THE MOST AWKWARD POSITIONS. HE SLEEPS ON HIS BELLY A LOT, AND

IT DOESN'T INTERFERE WITH HIS TUBE FEEDING, EXCEPT CAUSING THE PUMP TO ALARM

OCCASIONALLY DUE TO THE TUBING BEING KINKED.

>

> 2. How long does it usually take for the surgery site to heal?

IT HAS BEEN A LONG TIME FOR US (ALMOST 11 YEARS AGO), BUT I AGREE WITH EVERYONE

ELSE'S RESPONSES - ABOUT A WEEK.

>

> 3. How do you handle infection at the site.

THIS ISN'T TOO COMMON, BELIEVE IT OR NOT. MATTHEW MAY HAVE HAD 1 INFECTION IN

11 YEARS, BUT I DON'T REMEMBER WHAT WE DID FOR IT.

>

> 4. How do you handle tissue granulation at the site?

WE HAVEN'T DEALT WITH THIS FOR AWHILE, BUT WHEN WE DID, WE USED SILVADENE

CREAM (THIS IS REALLY A PRESCRIPTION BURN CREAM, BUT IT DID THE TRICK). THERE

IS

ALSO SOMETHING CALLED STOMAHESIVE POWDER, WHICH I THINK YOU CAN GET AT A

MEDICAL SUPPLY STORE OR SPECIALIZED PHARMACY.

>

> 5. Is it Prevacid or Prilosec that you can get in a liquid form that

> can be injected into the tube?

I DON'T KNOW THE ANSWER TO THIS, AS MATTHEW TAKES THIS BY MOUTH. IS CONNOR

TAKING THIS TYPE OF MED NOW? IF SO, WHY NOT CONTINUE GIVING IT TO HIM THE WAY

YOU HAVE BEEN?

>

> 6. If the slow feeds overnight cause a lot of vomiting, would that

> indicate that Connor needs a Pyroplasty or the NF procedure?

MATTHEW HAD THE FUNDO DONE AT THE SAME TIME AS HIS G-TUBE SURGERY. I WAS

TOLD THAT IF YOU WERE PUTTING A G-TUBE IN THAT YOU ALSO HAD TO DO THE FUNDO.

I KNOW NOW THAT THIS IS NOT ALWAYS THE CASE. I NEVER EVEN HEARD OF A

PYLORPLASTY UNTIL JOINING THIS LISTSERVE & ATTENDING THE CONVENTIONS. MY

FEELING IS THAT IF YOU AND THE DOCTOR FELT THERE WAS A NEED FOR EITHER OF THESE

PROCEDURES, YOU SHOULD DO THEM AT THE SAME TIME AS THE G-TUBE INSERTION TO

AVOID ANOTHER SURGERY.

>

> 7. How will the feeds affect his oral feeding? We worked for 2 1/2

> long years to get Connor's mouth desensitized and get him to

> lateralize and chew his food. Even though the malocclusion of his

> jaw is prohibiting full digestion of his food, AT LEAST WE CAN GET

> IT IN HIM! Is he going to lose this function due to a lack of

> hunger?

THIS WILL DEPEND ON THE SCHEDULE HE IS ON. WILL HE USE THE TUBE ONLY AT NIGHT OR

WILL IT BE CONTINUOUS THROUGHOUT THE DAY TOO? MY SON NEVER WAS AN ORAL

EATER, BUT AFTER YEARS OF INTENSIVE THERAPY & ATTENDANCE AT A FEEDING

PROGRAM, HE HAS THE ABILITY TO EAT BY MOUTH NOW. HE DOESN'T PREFER THIS

THOUGH & STILL GETS PROBABLY 95% OR MORE OF HIS CALORIES VIA G-TUBE. HE

RECENTLY WENT ON CONTINUOUS FEEDS DURING THE DAY, BUT WE STOP THE PUMP FOR 2

HOURS DURING LUNCHTIME AND THEN HE IS OFF FOR 4 HOURS FROM DINNERTIME TO

BEDTIME. MATTHEW RARELY IS HUNGRY, & THIS WAS TRUE EVEN WHEN HE WAS ONLY ON

CONTINUOUS FEEDS AT NIGHT. FOR CONNOR THOUGH, I THINK IF YOU COULD ESTABLISH

A SCHEDULE THAT WOULD ALLOW HIM TO CONTINUE EATING MEALS & SNACKS, YOU WILL

HAVE A NICE BALANCE.

> 8. When do you get to take the tube out? What medical criteria

> determines that your child is thriving enough without it?

UNFORTUNATELY FOR US, WE ARE A LONG WAY FROM THIS. I THINK THE CRITERIA IS 6

MONTHS OF NO USE OF THE G-TUBE WITH CONTINOUS WEIGHT GAIN.

> 9. What do I tell my son? He's two and a half and very self aware.

> In a few days he's going through a surgery that's going to change

> his life for the better (we hope). What do I tell him?

TOUGH QUESTION - I DIDN'T HAVE TO DEAL WITH THIS. I WILL TELL YOU THOUGH

MATTHEW IS VERY CONCERNED WITH HOW HE PRESENTS TO OTHERS, BUT HIS G-TUBE HAS

NEVER BEEN IN ISSUE WHEN IT COMES TO MAKING FRIENDS OR BEING MADE FUN OF, ETC.

I AM SO THANKFUL FOR THAT!

> 10. As many of you know, Connor lives life at full throtle! He's

> all " boy. "

IN THE BEGINNING, HE MAY NEED TO BE MORE CAREFUL UNTIL HE IS ABLE TO GET A

BUTTON. AFTER THAT, HE REALLY SHOULD BE ABLE TO DO MOST OF WHAT HE HAS

ALWAYS DONE. MATTHEW IS VERY ACTIVE. HE ROLLER BLADES & SKATE BOARDS WITH HIS

FEEDING PUMP. WE TRIED KARATE WHEN HE WAS YOUNGER, BUT HE DIDN'T LIKE IT TOO

MUCH. HE BELLY FLOPS INTO THE POOL. THERE REALLY AREN'T TOO MANY LIMITATIONS

FOR HIM HAVING A G-TUBE. I WOULD RECOMMEND THAT CONNOR GET THE ZEVEX

ENTERALITE PUMP IF HE WILL BE WEARING IT DURING THE DAY. IT IS LIGHTWEIGHT & IS

CARRIED IN A SMALL BACKPACK THAT HAS THE WEIGHT EQUALLY DISTRIBUTED ON THE

SHOULDERS/BACK. SINCE CONNOR HAS KYPHOSIS LIKE MATTHEW (MATTHEW ALSO WEARS

A BACK BRACE), THIS WOULD BE PREFERRED OVER THAN KANGAROO PET, WHICH IS

HEAVIER & IS CARRIED IN A SHOULDER BAG (THIS BAG WOULD BE TOO BIG FOR CONNOR

ANYWAY). WE HAD THE KANGAROO PUMP FOR OVER 10 YEARS AND JUST SWITCHED TO

THE ZEVEX LAST MONTH WHEN HE WENT BACK ON CONTINUOUS FEEDS DURING THE DAY.

THE KANGAROO PET WAS FINE FOR USE AT NIGHT, BUT I COULD NOT USE THIS FOR

DAYTIME FEEDS FOR HIM. I HAD A LOT OF TROUBLE GETTING THE ZEVEX. OUR DME

COMPANY & INSURANCE COMPANY DOES NOT PROVIDE " BRAND SPECIFIC " PUMPS. WE

NEEDED A LETTER FROM DR. H JUSTIFYING WHY HE NEEDED THIS PUMP ALONG WITH HIS

MEDICAL RECORDS & THEN HAD TO WAIT FOR IT TO GO THROUGH THE MEDICAL REVIEW

BOARD. THIS PUMP PROBABLY COSTS 2-3 TIMES THE COST OF THE KANGAROO PET. THE

BIGGEST REASON WE WERE ABLE TO GET THIS PUMP APPROVED WAS BECAUSE OF

MATTHEW'S KYPHOSIS/SCOLIOSIS.

I WISH YOU & CONNOR LOTS OF LUCK & FEEL FREE TO THROW MORE QUESTIONS OUR WAY

AS THEY ARISE!

KIM C.

[Guest guest]

,

Thanks for sharing this wonderful website. There is a lot of relevant

information on here.

Of particular interest to me was under kids with tubes news. If you click

there, you get a

choice of a few topics. Click on the nutrition for the tube-fed child link. I

found answers

to a lot of questions I had there, such as the # of calories/kilo a child needs

to grow ( Pat,

wasn't this a question we were just discussing?) & how to calculate the amount

of fluid a

child needs at various weights (good to know when your child is dehydrated). It

also tells

you the amount of vitamins & minerals recommended by the RDA and things you can

add

to foods to increase calories. Of recent debate, the food pyramid is there & a

bit of info

about good fasts vs. bad fats. Information comparing various types of formula &

how to

choose the right formula is discussed as well as a recipe for blended tube

feeding formula.

The link for therapies is also good too. Just wanted to give a quick summary in

case

anyone missed this. Jenn, there is a lot of info in here that would be good for

the RSS

guidebook.

Check out the web site http://www.kidswithtubes.org/

Kim C.

[Guest guest]

HI MARY,

BEST OF LUCK TO YOU, CONNOR AND YOUR FAMILY THIS WEEK. ALL I CAN SAY IS THE

G-TUBE HAS BEEN A MIRACLE FOR HENRY. I PUT SOME THOUGHTS IN CAPS NEXT TO YOUR

QUESTIONS.

DENISE

HENRY 4 1/2 YRS RSS, GTUBE, FUNDO,PYLORO,NUTROPIN,PRILOSEC,ZANTAC,PERIACTIN

CATHERINE 9YRS NONRSS

Dear Friends,

Well, next Friday Connor gets the g-tube. Today it just dawned on

me that I have a lot of specific questions that I hope you all will

respond to in the next few days. I have to admit that in the past I

always skipped the posts that dealt with g-tubes, pyroplasty surgery

and the nissen fundoplication. Connor was an " eater " and we didn't

have to learn that. Well, now, I have to play catch up.

So, in the Spirit of Letterman (Drum Roll Please!!!), Here are

my Top 10 Questions on how to rearrange your family's life around a

g-tube fed child.

1. Connor is a belly sleeper. Will he have to change this for the g-

tube to work properly? Will I have to manipulate his crib in any way

to assist the feed?

WE JUST LET HENRY GO - THEY SEEM TO FIGURE OUT WHAT WORKS BEST FOR THEMSELEVES

2. How long does it usually take for the surgery site to heal?

HENRY HEALED VERY QUICKLY AFTER SURGERY BUT THE AMOUNT OF TIME HE WAS ON THE

PUMP (ZEVEX IS THE BEST IF CONNOR IS GOING TO BE ON THE PUMP WHILE HE IS

AWAKE)WAS WHAT WE STRUGGLED WITH. HENRY WAS ON FOR ABOUT 18HOURS A DAY WHICH IS

A LARGER EFFORT THAN JUST AT NIGHT. I NEEDED TO MAKE SURE HENRY'S CAREGIVER WAS

COMFORTABLE WITH THE WHOLE PROCESS. I ENDED UP TAKING MORE TIME FROM WORK THAN

I THOUGHT AFTER SURGERY. IT TOOK SOME TIME GETTING THE ROUTINE DOWN

3. How do you handle infection at the site.

WE NEVER HAD TO DEAL WITH INFECTION

4. How do you handle tissue granulation at the site?

HENRY STILL HAS GRANULATION TISSUE AND DRAINAGE TWO YEARS LATER IF WE DON'T

MANAGE THE SITUATION. I AVOID THE CORTIZONE IF THE SIGHT IS RAW (IT HURTS) BUT

LATELY WE HAVE HAD FANTASTIC LUCK WITH CALMOSEPTINE CREAM. WE APPLY THE CREAM

AFTER A BATH AND PLACE A NON-STICK PAD AROUND THE TUBE AND IT HAS KEPT THE

DRAINAGE AND TISSUE LOOKING GREAT.

5. Is it Prevacid or Prilosec that you can get in a liquid form that

can be injected into the tube?

WE USE LIQUID PRILOSEC, THE PREVACID WAS CLOGGING UP THE TUBE.

6. If the slow feeds overnight cause a lot of vomiting, would that

indicate that Connor needs a Pyroplasty or the NF procedure?

DOES CONNOR HAVE DELAYED GASTRIC EMPTYING AND REFLUX?

HENRY HAS DELAYED GASTRIC EMPTYING AND HIS RATE IS PRETTY LOW AT 40ML PER HOUR.

I REALLY WONDER HOW EFFECTIVE HIS PYLORO WAS FOR HIM? I DON'T THINK HIS DGE HAS

CHANGED THAT MUCH MUCH. HIS REFLUX HAS CERTAINLY IMPROVED AFTER THE FUNDO AND

WITH MEDS, BUT THE DGE????

7. How will the feeds affect his oral feeding? We worked for 2 1/2

long years to get Connor's mouth desensitized and get him to

lateralize and chew his food. Even though the malocclusion of his

jaw is prohibiting full digestion of his food, AT LEAST WE CAN GET

IT IN HIM! Is he going to lose this function due to a lack of

hunger?

I HEAR YOU LOUD AND CLEAR ON THAT ONE. WE STOP THE PUMP 2HOURS BEFORE HE EATS

BREAKFAST AT A MINIMUM, OTHERWISE HE HAS RESIDUAL AND HAS NO HUNGER FOR

BREAKFAST

8. When do you get to take the tube out? What medical criteria

determines that your child is thriving enough without it?

I THINK THERE ARE MANY CRITERIA, WEIGHT GAIN, EATING FOR NUTRITION, BEING ABLE

TO MANAGE SICKNESS WITHOUT SUPPLEMENTAL FEEDING.

9. What do I tell my son? He's two and a half and very self aware.

In a few days he's going through a surgery that's going to change

his life for the better (we hope). What do I tell him?

WE CALL HENRY'S AMT MINI BUTTON(WE SWITCHED FROM A MIC-KEY BECAUSE THE TUBING IS

BETTER ON THE AMT AND THERE AREN'T AS MANY TANGLES AT NIGHT WITH THE PUMP

BEEPING DUE TO NO FLOW) A TUMMY BUTTON. EVERYONE HAS A BELLY BUTTON BUT HE IS

SPECIAL AND NEEDS A TUMMY BUTTON TO HELP HIM GROW. IT WAS WONDERFUL THE FIRST

TIME WE WENT TO A MAGIC CONVENTION AND THERE WAS A POOL FULL OF KIDS WITH TUMMY

BUTTON'S JUST LIKE HENRY. HE WAS 2 1/2YRS.

10. As many of you know, Connor lives life at full throtle! He's

all " boy. " I remember a post from Judith about her son popping out

the tube while playing at leaping lizards. Besides not sliding on

your belly, what other things should Connor be careful of. (I.E.

The playgroud, wrestling with Daddy and brothers, karate,

gymnastics, etc, etc, etc.) I don't want to put my son in a bubble,

but I know that I don't want to deal with a popped out g-tube

either. You know the ole' saying, " An ounce of prevention... "

LITTLE BOYS MUST BE LITTLE BOYS, THE FIRST TIME IT POPS OUT YOU FREAK OUT THEN

THE NEXT TIME IT'S OKAY WE ALL KNOW THE DRILL. HENRY TAKES GYMNASTICS AND

KARATE, LOVES TO PLAY HARD (INCLUDING SLIDING ON HIS TUMMY) - KIDS ADAPT, THEY

ARE WIRED FOR IT BETTER THAN US!

So, that's all for now. I'm sure as I obsess about this for the

rest of the day, I'll probably come up with at least another twenty

questions. I would like to thank Maloy in Norfolk and Alison in

andria for helping me thus far. Your calmness has been greatly

appreciated (grin).

Hugs to All!

Mom to Graham 8 ADD; Cameron 5; Connor 2 IUGR RSS Kyphosis,

Asymmetry, Periactin, Prevacid, Zantac Nutropin in two weeks; g-tube

in 6 days.