Re: ABC's of the g-tube? >

[Guest guest]

My answers in CAPS! Hope this helps!

1. Connor is a belly sleeper.

PIPPIN IS ONLY A BELLY SLEEPER...SHE HAS NO PROBLEMS WITH THE

TUBE. ALSO LIKE PAT, I CUT HOLES IN THE CROTCH OF HER FUZZIES (WARM

SLEEPERS) I ALSO TRY TO FIND SLEEPERS WITHOUT ZIPPERS AS MUCH AS

POSSIBLE. I HIGHLY SUGGEST MAKING HIS BED A FEW TIMES. WATERPROOF

PAD, SHEET---WATERPROOF PAD, SHEET...IF OR SHOULD I SAY WHEN HE PULLS

THE TUBE OUT OR GETS THE MED PORT OPEN AND FORMULA IS ALL OVER, YOU

CAN JUST PULL OFF THE WET SHEETS WITHOUT HAVING TO REMAKE THE BED IN

THE MIDDLE OF THE NIGHT.

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

SAME ABOUT 1 WEEK. ONCE YOU GET THE MICKEY BUTTON IT'S A SNAP.

3. How do you handle infection at the site.

PIPPIN HAS NEVER HAD AN INFECTION. WE PUT BACTROBAN ON HER SITE

AFTER EACH BATH 3-4 TIMES PER WEEK.

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

SHE ALSO HAS HAD NO GRANULATION TISSUE. BUT I'VE HEARD THAT

EUCALYPTUS OIL IS WONDERFUL. I FOUND IT ON ONE OF THE SITES

RECOMMENDED IN PREVIOUS POSTS AND MY DOCTOR ALSO HIGHLY RECOMMENDS IT.

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

can be injected into the tube?

WE USE COMPOUNDED PREVACID/WHICH IS KEPT IN THE FRIDGE. I HAVE

HAD NO PROBLEMS WITH IT. HOWEVER IT IS EXPENSIVE. WE HAVE LOW CO-

PAYS AND IT'S $40 PER MONTH.

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

indicate that Connor needs a Pyroplasty or the NF procedure?

I KNOW IN THE BEGINNING PIPPIN VOMITED ALL THE TIME UNTIL WE

FIGURED OUT WHAT SHE COULD HANDLE. ALSO MAKING THE BED A FEW TIMES

WILL HELP WITH THE VOMITING. PIPPIN HAD THE NISSEN WHEN HER TUBE WAS

PLACED.

7. How will the feeds affect his oral feeding?

PIPPIN WAS 4MO WHEN SHE GOT HER GT...SO SHE IS JUST LEARNING TO

EAT...TODAY SHE ATE 6 NOODLES OF MAC-N-CHEESE! BY FAR A HUGE

ACOMPLISHMENT FOR HER BABY STEPS

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

WHEN PEOPLE ASK ME HOW LONG WILL SHE HAVE HER TUBE-I ALWAYS SAY

SHE'LL HAVE IT REMOVED WHEN SHE DOESN'T NEED IT ANYMORE. MY GOAL IS

BY THE TIME SHE'S 5 SHE WILL ONLY BE ON THE PUMP DURING THE

OVERNIGHT. (I HOPE)

9. What do I tell my son?

I WISH I COULD HELP. YOU HAVE A WISE AND LOVING FAMILY. LOTS OF

HUGS, LAUGHTER, PRAYER, TEARS, AND REMEMBER CONNER WILL BE A FINE,

HEALTHY ADULT ABLE TO LIVE ON HIS OWN, GET MARRIED, HAVE A FAMILY,

ETC...

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

ALWAYS KEEP A SPARE MICKEY BUTTON...WE KEEP 1 IN THE CAR AND 1 AT

HOME. THAT WAY WE'VE ALWAYS GOT ONE WITH US...ALSO TEGADERM

TAPE...IT'S GREAT! IF WE GO TO THE BEACH OR IN THE SUMMER WHEN PIP

PLAYING IN THE SANDBOX ALL DAY IT KEEP EVERYTHING AWAY FROM THE

BUTTON. AND THE BEACH...DON'T LET LAKE WATER GET NEAR THE SITE.

ALSO LIKE THE OTHERS SAID- I ALWAYS KEEP A ONSIE ON HER, IT'S JUST

ANOTHER BUFFER ZONE...PIPPIN ISN'T ON THE TUBE 24/7 SO WHEN SHE'S NOT

GETTING HER FEED (OR AS WE SAY ON THE PUMP) I MAKE SURE TO REMOVE THE

CONNECTOR TUBE.

WE DO NOT USE AN IV POLE...WE JUST PUT THE PUMP & BAG ON THE FLOOR OR

SOMETIMES INTO THE BACKPACK. WE ALSO HAVE SEVERAL CUP HOOKS PLACED

AROUND THE HOUSE AND THE RINGS THAT HOLD TOYS FOR INFANTS...WE USE

THOSE EVERYWHERE THE BAG CAN HOOK ONTO THEM SUPER EASY...WE EVEN USE

THEM IN THE CAR IF ON THE PUMP ON THE RUN. AT NIGHT HER PUMP IS AT

THE OPPOSITE END OF THE CRIB AND THE BAG IS HANGING FROM THE TOY RING

THINGS...WHAT EVER YOU DO GET THE ZEVEX PUMP! IT'S HANDS DOWN THE

VERY BEST ESPECIALLY FOR AN ACTIVE BOY LIKE CONNER.

I HAVE TO TELL YOU THAT WHEN PIPPIN GOT HER TUBE IT WAS BY FAR THE

HARDEST DECISION I'VE EVER MADE IN MY LIFE...BUT IT WAS THE CORRECT

DECISION...I REALLY DON'T THINK OUR MARRIAGE WOULD HAVE SURIVED OUR =

MY DAILY LIFE WAS ONLY PIPPIN & WHAT SHE DIDN'T EAT...TULLY SUFFERED

TREMENDOUSLY AND I TOOK ALL OF MY FRUSTRATIONS OUT ON DAN

TEAM LAPISH IS A MUCH HAPPIER AND HEALTHLIER FAMILY BECAUSE OF A GT.

THE BEGINNING WAS VERY TOUGH BUT VERY VERY WORTH IT.

Team Lapish

Jenyfer, Dan, Tully, Pippin & Ryker

[Guest guest]

Hi ,

I figured by the time I got to the end you would have received

plenty of answers, but since I keep seeing my name mentioned (lol) I

will take a stab at answering all your questions. Again, feel free

to email me directly or post with any additional questions...

> 1. Connor is a belly sleeper.

>

> JASON STILL SLEEPS ON HIS BELLY. THE ONLY THING YOU NEED TO

WATCH OUT FOR IS JASON SOMETIMES WRAPS HIMSELF IN THE TUBING. IF

THE TUBE KINKS, THE PUMP WILL BEEP AND THEN I JUST UNRAVEL HIM.

THIS HAPPENS ABOUT 1X PER WEEK. WHEN JASON WAS STILL IN A CRIB, WE

KEEP THE IV POLE AND PUMP AT THE FOOT OF THE CRIB SO HE COULDN'T

WRAP THE WIRE AROUND HIS THROAT. THE BUTTON ITSELF HAS ONE PORT.

IT IS THE CONNECTOR TUBE THAT HIS TWO, ONE FOR MEDS AND ONE FOR THE

PUMP. WE HAVE SIMPLY STOPPED USING THOSE CONNECTORS. JASON DOESN'T

REALLY EVER NEED MEDICINE WHEN HOOKED TO THE PUMP SO WE SWITCHED TO

ONLY USING BOLUS CONNECTORS (1 PORT) AT NIGHT. THEN THERE IS NO

MEDICINE PORT TO OPEN AND LEAK.

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

>

> SAME ABOUT 1 WEEK. ONCE YOU GET THE MICKEY BUTTON IT'S A

SNAP.

>

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

>

> JASON HAS NEVER HAD AN INFECTION.

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

>

> WE HAD TO USE SILVER NITRATE (AFTER NUMBING), BUT WE HAVEN'T HAD

ANY PROBLEMS IN ABOUT 2 YEARS.

>

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

that

> can be injected into the tube?

>

> I FOUND A PHARMACY IN NYC THAT COMPOUNDS THE PRILOSEC FOR US.

THEY DELIVER. I HAVE A $10 COPAY ON THIS (FOR THE GENERIC).

>

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

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

>

> I AGREE WITH PAT. YOU NEED TO FIND OUT IF CONNOR NEEDS THOSE

PROCEDURES FIRST AND DO THEM ALL TOGHETHER. I BELIEVE IF THE CHILD

HAS ANY REFLUX AT ALL, DR H WILL NOT PUT IN A GTUBE WITHOUT THE NF

BEING PERFORMED AT THE SAME TIME. SHE ALSO PREFERS TO DO A

PYLOROPLASTY AT THE SAME TIME, BUT SHE INSISTS ON A GASTRIC EMPTYING

STUDY FIRST. IF THERE IS NO DELAY THEN THE PYLOROPLASTY IS NOT

NEEDED. HOWEVER, INSERTING A GTUBE FOR A CHILD WITH REFLUX AND NOT

PERFORMING A NISSAN IS ASKING FOR MORE VOMITING AND BIGGER PROBLEMS.

>

> 7. How will the feeds affect his oral feeding?

>

> JASON HAD HIS INSERTED AT AT 2 YR 4 MONTHS AND WAS EATING

ORALLY. AT FIRST, DR H WANTED JASON ON CONTINUOUS FEEDS BUT WE

REFUSED. WE HAD WORKED TOO HARD FOR TO LONG TO GET JASON TO EAT.

WE SETTLED ON TAKING HIM OFF THE PUMP 3X DAY FOR 2 HOURS EACH TIME.

1 HOUR BEFORE THE MEAL WE WOULD TURN OFF THE PUMP AND THEN HE HAD AN

HOUR TO EAT/PLAY. BREAKFAST QUICKLY TURNED INTO 2 HOURS OF PLAYING

SINCE HE WAS TOO FULL FROM OVERNIGHT TO EAT. HOWEVER, HE WOULD EAT

A FEW BITES OF LUNCH AND DINNER THIS WAY. LITTLE BY LITTLE WE

DECREASED THE DAYTIME PUMP. NOW JASON (ON SCHOOL DAYS ONLY) COMES

OFF THE PUMP AT 6:30 AM. HE EATS BREAKFAST AT SCHOOL AT 9, THEN

LUNCH AT 11:30. AFTER LUNCH HE RECEIVES A BOLUS OF 110 ML. THEN HE

HAS AFTERNOON SNACK AT SCHOOL. WHEN HE GETS HOME FROM SCHOOL HE HAS

A SNACK THEN ANOTHER 110 BOLUS (AROUND 3:30) HE EATS DINNER AT 6.

HE RECEIVES A 60 ML BOLUS WITH MEDICINE MIXED IN AT 8. BEDTIME IS

8:30 AND WE HOOK UP THE PUMP UNTIL 6:30 AM. HE RECEIVES 48 ML PER

HOUR AT NIGHT. HE WAS NEVER REALLY ABLE TO TOLERATE MORE AT NIGHT

AND NOW HE DOESN'T REALLY NEED IT.

ON THE WEEKEND, THE ONLY BOLUS I USUALLY DO IS THE 8 PM ONE. THIS

IS BECAUSE I AM HOME AND CAN STAY ON TOP OF WHAT HE EATS BETTER. WE

ARE HOPING THAT FOR SCHOOL NEXT YEAR (KINDERGARTEN) WE CAN SKIP THE

BOLUS HE CURRENTLY GETS AT SCHOOL. THAT WILL MAKE FINDING A SCHOOL

FOR HIM MUCH EASIER.

WHEN HE IS SICK AND WONT EAT, I WILL GIVE HIM A LITTLE MORE FORMULA

THROUGH THE PUMP. OF COURSE, JASON HAS NOW FALLEN IN LOVE WITH

SOUP, SO I DON'T KNOW IF I WILL EVEN HAVE TO INCREASE THE PUMP FOR

ILLNESS ANYMORE.

>

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

>

> I AM HOPING THAT BY THE TIME HE IS 8 WE WILL BASICALLY BE DONE

WITH IT, BUT WHO KNOWS. I WOULD RATHER KEEP THE BUTTON LONGER THAN

HAVE TO RE-INSERT IF THERE ARE PROBLEMS LATER.

> 9. What do I tell my son?

>

> THIS IS A TOUGH ONE. I CAN'T REMEMBER WHAT WE TOLD JASON. I

KNOW THAT WE WERE REALLY CONCERNED BECAUSE JASON HAD JUST STARTED

WALKING AND WE WERE CONCERNED ABOUT REGRESSION. TWO DAYS AFTER

SURGERY HE WAS WALKING AROUND THE WARD DRAGGING AN IV POLE WITH

HIM. I WOULD EXPLAIN TO CONNER THAT EVEN THOUGH HE WORKS HARD TO

EAT HE ISN'T EATING ENOUGH TO GROW AND SO THE DOCTOR IS GOING TO PUT

A TUBE IN HIS TUMMY THAT HE CAN EAT THROUGH SO HE WILL GET BIG AND

STRONG. TELL HIM IT WILL HURT FOR A LITTLE WHILE BUT THEN IT WILL

GO AWAY. I REALLY DON'T HAVE ANY BETTER IDEAS. HE IS PROBABLY TOO

YOUNG TO UNDERSTAND ANY MORE THAN THAT.

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

>

> WE ALWAYS KEEP A SPARE MICKEY BUTTON...WE KEEP 1 IN THE DIAPER

BAG AND 1 AT

> HOME. THAT WAY WE'VE ALWAYS GOT ONE WITH US. ALSO MAKE SURE THE

KEEP THE TWO OF CORRECT SYRINGE (PREFERABLY 1 FILLED WITH THE RIGHT

AMOUNT OF CLEAN WATER) SO THAT YOU CAN CHANGE THE BUTTON WHEREEVER

YOU ARE.

AS FOR CHANGING THE BUTTON, STEVE ONCE SENT PAT EXPLICIT STEP BY

STEP INSTRUCTIONS. IF SHE STILL HAS THEM, MAYBE SHE CAN SEND THEM

TO YOU. HANDY TO HAVE FOR THE FIRST TIME YOU NEED TO CHANGE THE

BUTTON WHEN YOU ARE IN A PANIC.

We fought the tube for a long time. In the end, this was right for

. He has come a long way. He eats better, tries new food, and

meals have gotten so much easier.

Judith, Steve, (RSS) and (non RSS) 5 year old twins