Posted By Posting
Sep 12, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
New Comer with G-tube Leakage and other problems
Hi. I am a dad with 11 month daughter, Kailey. Kailey has had G-tube and nissen placed for 5 month now. The leakage has been the biggest problem for us. we have been applying Calmoseptine and triamcinolone ointment and change the dressing twice a day but I was never able to make it stop leaking. The granula tissue has been there on the site ever since and now it has a big hole around the button that makes leak more. Another problem is that we anchor the button all the way down to the skin but it never stays down so Kailey always need thick dressing. she is on bi-pap for her respitory insufficiency. G-tube doctor says bi-pap pressure and her thin stomach wall does not hold the button down so there is nothing he can do. Her original button was 1.5cm but now she has 1.0cm mini one 16 french. We tried 0.8 cm(the shortest available) mickey button but even that came up. Mickey button was bigger in size so we changed back to 1.0cm. Putting more water in the balloon didn't help either. She has 8ml now. Maximum is 10ml but we were advised not to put anymore. Her doctor's approach has been like some babies just leak foreever but that is not acceptable for us. If anyone knows great G-tube specialist or GI doctor in Manhattan or long Island area in NY, please let us know. Any parent who has good ideas or tips on her G-tube problem please let us know. You can e-mail me anytime and phone call would be great too. Kailey is going through issues so please read our story and any help and advice would be appreciated.
Sep 12, 2009
marcyk.momoftwo
I do not have any experience with what you are going thru with the g-tube... but my prayers are with your daughter and your family.
Sep 12, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
i know a couple moms who have (had) babies with G-tubes who might be able to help, i am also going to e-mail you as well *hugs*
Sep 12, 2009
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
oh i am sorry i thought your e-mail was in your profile, you can e-mail me at wicked_lg@yahoo.com if you would like
Sep 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
OK, I worked this weekend but was directed here, thanks Kat. :-)

Is the leaking coming from the stoma or from the button itself??

Have you had any or did you have any type of motility testing prior to have the Nissen done?? How was the button placed, did you have the long tube or go directly to a button, was it placed open or closed?? Sorry about the ?? but I need a little more info.

Some kids are just leaking around the stoma. It really stinks. What "could" be happening is that her stomach is not emptying fast enough and the pressure builds up and since she has a Nissen done, the fluid has NO where to go, so, it goes out the path of least resistance.

I will log back in after church today, so it will be a few hours until I can get back to you.

Sep 13, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
more information about kailey's G-tube problem
Thanks Kathryn and Jessica. Ok, Kailey had empty stomach test befor G-tube placed and came out noraml. When she had first G-tube(mushroom) placed, we were close feeding her using right angle feeding tube and burfed her every two hours. The buttom slowly came up and popped out from the stomach in less than a week. Doctors believed so, due to the pressure from Bi-pap and Kailey being extermely gasy. They recommended swiching to ballon type and open chimney feeding using shorter decompression tube. the button did not pop out afterwards. Later on, we were able to close feed her with right angle tube again. we still do. we have her tube attatched to the button at all times beacuese given her dignosis she does not tolerate any more than 2.5oz at a time. We run it 75cc an hour and rest for an hour during daytime and open feed her at 45cc an hour at night bacause she is very gasy. We usually gas her every thirty minutes so we have to use tube all the time. So this whole time, it has been leaking. Leaking comes from stoma. We use strecthable band to put around her stomach to secure the button from moving so much. Her site gets better and worse but now it is real bad looking. It is not infected though. It leaks the most when she gets her PT and OT done and when put on her stomach. will be wationg for the response. Thanks! Also, You can e-mail me at jaejoon0828@yahoo.com
Sep 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
I'll shoot an email off to you when I get back from church tonight.

Do you use Farrel Valve Bags when you do feedings?? Those might help. they can be tricky to get to work, but once you do, they work well.

As far as GES, they can be pretty unreliable...Jedd's were. You can do an at home Motility test...LOL We used to feed Jedd wait all the way until 30 mins prior to a feed. Then, we would hook him up to a bolus feeding extension that was clamped. Then we would attach the end of the extension onto an empty 60cc syringe.

We would sit Jedd on the counter top and unclamp the clamp. then make sure the syringe is LOWER than her body. Fluid will start to drain out of her body and into the syringe. You'll get lots of air as well. We would push on Jedd's belly and move him around. We even laid him down to try and get ALL of the fluid out that we could.

This would take both my husband and I BTW...can be tricky because you really really don't want to get that fluid onto you...YUCK.

Once done, you can clamp and see how much came out. then you will want to put it all back in so that you don't mess up the electrolyte balance in the body.

with Jedd, he was on 3 hour feed with boluses. He would get 90cc. We could feed him, wait 2.5 hours, drain him and he would still have around 75ccs left. REALLY bad motility.

We would give him his Reglan and drain all the fluid back into his body and do the process all over again in 30 mins right before his feed. At that time we would get around 15ccs of fluid. Classic DGE. And this was after having 2 Gastric Emptying Studies that came back as normal.

He did have an Antro-Duodinal Manometry test done at a major children's hospital in Ohio. It came back with results of slowness in some regards but he did have periods of normalcy. So, it was a mixed bag of results. Because he was still having times where he showed slowness, they sent us home (to Virginia) ON his motility meds.

with Jedd as well, we firmly believe that some of his DGE issues stemmed from his need for a high HIGH dose of Prilosec. PPIs can be known to cause DGE. IF you google DGE and PPIs you will find medical articles that will state t his, I found them.

Once we got on the right balance of his PPI and a motility med (EES erythromycin) we were able to have better success with his motility. We have been able to wean from the PPI to an H2blocker and come off the EES all together now. It took over a year for both of those to take place though. We did it slowly.

Could you possibly put a Foley Cath. in place for a bit to allow the stoma to close up and then put a button back in??? Jedd had a foley in overnight once because he had yanked his tube and the ER could NOT get one back in. The surgical office was able to the next day. He shrunk from a 14F to an 8foley. So, he shrunk by about half.

Sep 13, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
Thank you Jessica for your advice. I will definitly try foley cath as soon as I get it. Is there a chance to close up to much to put back in original button leaving overnight? Also, have you used 14french afterwards? Kailey has 16 french and if 14 works well, maybe I should go lower in size? Kailey uses infinity bags now. She has real bad gas problem so I will look it to Farrel Valve Bags also. Kailey usually empties food pretty well. We use the way to check the residual the same way you did. She just does not tolerate 5oz feeding I guess. Kailey suffers whenver she gets sick or catches virus or infection. It starts with gagging and I stop feeding her. She would have same residual even day after. Her system just shuts down. She gets really uncomfortable, pushes everything out in the stomach and get extremely gasy even with no food. Sometimes it takes up to three days for her to take food again. So we end up in ER about twice a month. Maybe I can ask GI to prescribe Reglan? What about EES erythromycin? Kailey had couple bacterial infection and pneumonia once. What does EES erythromycin exatly do?
Sep 13, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Make sure you and the GI feel totally comfortable with using Reglan. It does have/can have some serious side affects. Most prevalant in kids with Nureo. kids. Jedd was very irritable on it so we had to stop after 16 weeks. But boy did it work great. EES worked but not as well.

Drs will RX the EES in low doses. It is known to move food throw the stomach. that's why when you do the higher doses for sickness, some kids will get diarrhea on you. Jedd's highest dose of EES was around 1.8cc 4x's a day.

During illness, Jedd's motiltity completely and utterly sucked. No bones about it, he would come to an almost complete stand still. When that happened, this is what we would do and what most of the tube feeders (I know hundreds of them online..LOL) do as well.

We immediately go to straight pedialyte through the pump. If this means we have to go all the way back to continuous feeds instead of bolus feeds, we do it and made him wear the back pack when he was big enough. When he was tiny, I just had to move the back pack as he crawled around.

After he tolerated that pretty well.....I would go to 50/50 during the day. Meaning, I would mix the formula and pedialyte and try a full feed amount.

At night though, sometimes I would still have to do straight pedialyte for longer. He tolerated formula during the day after an illness much faster than he would it at night.

For night feeds, we would gradually mix in formula 1 ounce at a time. We had issues with night feeds and the mix of formula and pedialyte. So, we would mix water and formula instead. For some reason, the pedialyte would separate and float to the top. Then, Jedd would be getting straight formula from the bottom of the Feeding bag and that would make him ill. Not a good thing.

So, in his night bad we would mix 16ounce so it would last all night long. We always hung 10 hours of a feed at one time, with NO medical issues for Jedd. Again, I don't know how long you hang night feeds for, but the websites for enternal formulas will tell you the longer safe hang times. It was nice to finally get sleep when I learned this.

This is what I would mix....

15oz water, 1 oz formula. If he tolerated that I would do:

14oz water, 2 oz formula...if he tolerated that I would do:

13oz water 3 oz formula. You get the picture.

If at any point, he did not tolerate this, I would back up a couple of days and then restart this schedule.

By doing this, you should avoid any ER or admission trips for dehydration. The body will do much better during an illness as long as they are hydrated. We did this will every illness Jedd had and he didn't have a single admission for dehydration ever.

Once a child is ill like that and they have a tube and they have motility issues......you pretty much have to abandon trying to add weight onto them and just keep them hydrated.

Jedd got hand foot and mouth once and it completely shut his GI tract down. Who would have thought?? right??? but it was horrid. I found out after the fact that HFM is an entero virus (SP?) that lives in the GI Tract....NOT good for a kid with GI tract issues. It was by far the WORSE illness that Jedd every caught, hands down.

With that illness, he ended up on continuous feeds for about 3 weeks. He could tolerate formula at about 1 week into the illness for day and night feeds, but he couldn't do any boluses during the day, so we had NO choice but to do continuous 24/7 with two 30mins periods off to try and empty him out for meds. It was NOT fun.

As far as using a foley overnight......they had to use a MicKey button with a wooden medical Qtip inside of it to stiffen it, in order to get the tube into his stoma. It was not fun, but it was affective. That is how our surgical office stretches the stoma in order to "force" the tube back in.

They lube in up really well, and then applied straight on, steady constant pressure to his site to get it to pop back in. And sure enough, after about 45 seconds of screaming Jedd and the NP constant pressure on his site, it went POP right back in. ....LOL It was pretty funny actually.

Too bad we had wasted the ER trip, they were totally NOT helpful. They kept telling me Jedd was going to have to go back to the OR to have his tube redone. I kept telling them NO call the surgical office. I'm sure the surgeon on call was yelling a blue streak at them that Sunday afternoon!!!!! The residents should have listened more closely when the NP of the surgical center did her speech to them on what to do when a kid like Jedd comes in after they have yanked their Tube out....LMAO

Sep 13, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
Thanks again Jessica for your kind and prompt advice. I feel really stupid not knowing these things as father. I will try that feeding method if Kailey gets sick again. I was gonna try to use Foley Cath myself at home, but I guess I need to take her to her surgeon? And, Could you e-mail me? It it is ok, there are more things I want to ask.
Sep 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
You are sooo not stupid for not knowing these things. Nurses never taught me these things. I learned them from other Mom and Dad's who have tube feeders. I have actually taught some hospital nurses a few things about tube feeding they didn't know. You'd be amazed...LOL

I sent you off an email a few hours ago around breakfast time.

I would def. talk to the surgeon first before putting a foley in overnight. Just to make sure.

Sep 14, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
You shouldn't do the erythromycin though. It is toxic to mitochondria and should not be taken by kids with mito.
Sep 14, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Kailey's dad - I am sending you an email with doctor's recommendations in NYC. Susie
Sep 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
thanks Jessica. I will need to remember that next time. How is Brent doing these days??
Sep 14, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Well, doing about the same really, he is hangin in there.He switched to J tubefeeds and it is finally helping his reflux symptoms, but he is still having a lot of abdominal pain/distension, he has intestinal issues too so though...thanks so much for asking! We saw genetics/metabolism last week and they are pretty sure all of my kids have mitochondrial disease, and dx them all with dysautonomia and a connective tissue disorder,which has me reeling..Brent could be on the fantastic 4 his skin is SO stretchy lol..There are pics on my blog, we actually just realized it was like that. I hope Jedd is doing well! I see he is tubefree! Congratulations!
Sep 14, 2009
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Sorry for the side track Kailey's Dad. :-)
I am soo sorry Jessica. I added your blog ot my bookmarks. I know you have your hands full with your brood so we haven't crossed paths here or on P2P in a while. Brent is such a cutie.

Thanks for the congrats, Jedd has been tube free about 2.5 months or so now. He's doing pretty well in the eating dept but still does not like to suck up fluids. Oh well, I'll take what I can get. He had another surgery about 3 weeks ago to rerepair his hypospadias for a third time!! We can't figure out why oh why his repairs keep failing.

What I do now is...if this one fails we are NOT doing another one for at least a year. He has had 3 each 6 months apart. He needs a break from the O.R. and so do me and hubby. It's not life threatening, so it can wait.

Sep 14, 2009
kaileysdad
Jay,dad to 11 month old princess, Kailey with mitochondrial depletion syndrome along with reflux disease(G-tube and nissen placement), respitory problem(Bi-pap dependent), muscle contractures and hypertension.
Thanks all !!
Big thanks to all for support and advice. I recently joined and I am just busy asking for help. Kailey is going through many challenges like you all are and I am not so knolwegable but I hope I can be helpful to someone like you all are, soon. Kailey has stopped eating orally for a while now, and I will be posting a message with new topic, so please check it out. . Susie! I have not recieved your e-mail. It will be great help. Could you send it again?
Sep 14, 2009
susiegal
Mom to Charlie - cleft palate and reflux. Meds - zantac, prevacid, mylanta and reglan.
Just resent the email. It will be coming from Susan Neill. If you don't see it, send me a note at susan.neill@gs.com.
Nov 04, 2009
jillmomma
ERYTHROMYCIN
This message is for Jessica. You say that Erythromycin is toxic to mitochondria. Why? my daughter has a mitochondrial disease and is on EES for low motility. It has helped her and we have not had any more trouble but i have heard this from another parent but when I question the doctors they say it is fine and that the drug i should be concerned with is Reglan. I have stopped the EES just in fear that I may be poisoning my daughter with it. Can you give me any information that backs this up? Thank you so much for your time! Jill
Check with your
doctor first!