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05-03-2013, 02:20 PM   #61
Mylittlesunshine
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Aw Hun I know lack of sleep ain't good.
Lucy has 3-4 feeds though the day then
The night feed awell which runs most of the
Night I tend to start it late so I don't have
To get up early in the night .
Hugs to all
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05-03-2013, 07:45 PM   #62
Farmwife
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Grace can drink 2-4 juice boxes (EO28 Splash) by mouth a day. So what's left (2-4 juice boxes) go into her tube. We start her pump at 4 or 5 pm and try to get it all through before bed. That way I'm not up at night trying to figure out why her pump alarm is going off (I feel for ya EthanClark). Our goal is to do bolus feeds but we're not even close to that yet. I can get her pump to about 120ml an hour right now.

A question to all the g-tubers (new name).
Did you or your kids have a lot of leaking around their mickey buttons? When did it start? Right aways or a couple days later?
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I'm mom to............... Little Farm Girl 8 yr old
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Ehlers-Danlos Syndrome dx (1/26/17)
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05-04-2013, 12:44 PM   #63
vtfamily
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Sounds like everyone is making their way with the "equipment."

We usually just clean the MicKey site with soap and water. That seems to do the trick very nicely.

Our GI doc applied the silver nitrate once, in the office. It was not a big deal at all. The applicator looked like a long match stick. He rubbed it over the site and everything looked much better very quickly. No pain or discomfort at all.

Also, placing a gauze patch around the site can help reduce rubbing while the site is healing over.

05-05-2013, 01:06 PM   #64
CarolinAlaska
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I'm glad there are several of you in the same boat with the g-tubes participating in this site and can help answer questions.
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
05-06-2013, 01:59 PM   #65
EthanClark
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Clark's tube leaks a little daily. We are changing the dressing once a day now. I let the shower do the cleaning so that I don't traumatize him then dry the site well and apply the steroid cream. It doesn't seem like the granulation is getting worse but it doesn't really look any better either. It has only been 4 days so I will just keep an eye on things. It does make it hard to get a good look because of the plastic stopper located on the top of the G tube.
05-06-2013, 02:13 PM   #66
Mylittlesunshine
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Farmwife for the first week Lucy's used to
Leak a bit, but seems to have settled down
Now.
05-08-2013, 06:25 AM   #67
Farmwife
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Question for all.......with g-tube.

Did blood show up on around the stoma? Like 7 or 8 days LATER?

Yes, Grace's nurse is coming over this morning!



05-08-2013, 09:35 AM   #68
EthanClark
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Farmwife, a little bleeding is normal. Clark had some bleeding when the granulation tissue started forming. I hope that isn't what is happening to Grace. Good Luck with the nurse.
05-08-2013, 10:21 AM   #69
Mylittlesunshine
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Farmwife Lucy had some aswell
I was told its part of the healing process
Hope it goes ok with the nurse
Hugs
05-09-2013, 08:03 AM   #70
Spooky1
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lol, 9 and a half years down the line and yes, mine still has some amount of blood too. good luck to all the kiddies with PEGs.

What is a Mickey device? I have a low profile peg. (corflo cubby)
05-09-2013, 08:07 AM   #71
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I google imaged it. similar to mine then. better than the garden hose isn't it?
05-09-2013, 09:16 AM   #72
EthanClark
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Spooky- I am sure it will be. We are excited to get Clark's changed to a MIC-KEY button in a few more weeks.
05-09-2013, 11:51 AM   #73
Spooky1
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I'm convinced he will be delighted with it! I also hope it helps his crohns too.
05-21-2013, 06:29 PM   #74
vtfamily
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After Gus' 21 days in the hospital...we found a new use for his Mic-Key button. We used it as a gravity drain post surgery! He was able to come home with it that way and it gave us an idea of how his bowels were recuperating from the surgery. Docs finally gave him permission to eat again (after five weeks)! We are starting to use the Mic-Key button to run feed again at night too. Will be a trade off between going off of the PICC line and TPN back to the g-tube and elemental nutrition.
05-22-2013, 01:21 AM   #75
Spooky1
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Speedy recovery and good luck with the progression!
05-22-2013, 08:08 AM   #76
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I'm glad your home and I hope and pray Gus can get back to normal soon.
I'm serious you look just like my older sister. I was going to call her and say look at your pic BUT.....she might get too excited at the idea of being adopted.
05-22-2013, 03:57 PM   #77
vtfamily
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Farmwife...that is sooo funny!
05-30-2013, 02:13 PM   #78
Farmwife
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I found a new love for the g-tube.
Venting!!!! Grace is having a lot of acid reflux and the GI said vents the tube 3 times a day.
It works like a charm!!!!
05-30-2013, 03:46 PM   #79
Spooky1
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yes, and for extreme wind too.
05-30-2013, 11:35 PM   #80
vtfamily
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That's awesome! Wonder if I could have one "installed" in my other (non-crohn's) gassy kids???
05-31-2013, 12:12 PM   #81
CarolinAlaska
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My daughter is extremely frightened of having a MICkey. Is it bad at all?
05-31-2013, 04:14 PM   #82
vtfamily
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CarolinAlaska,

Gus genuinely LOVE his g-tube. He has had both the Mic-Key button and a G-J tube. It takes the "pressure" off of him to eat when he doesn't really feel like it. His strictures are illusive, so contrast scans and MRI's are the best test we have to locate the problem(s). Gus HATES to drink the contrast material. In fact, he just won't and the tests have had to be cancelled or results minimal because of it.

Running the feed while he sleeps is not a problem. He is "free" from the pump all day for school and his regular activities.

He does have a little "drainage" at the site. I am told that it is not unusual. We have become pretty accustomed to it. If the area is wet, he just wipes it with a clean tissue and moves on. That part was a little strange at first. There were many "reports" to the doctor (early on) because of it. Now it is no big deal.

He can swim all summer without any worries. He can ride roller coasters. He can do everything he always did before the tube...except wrestling. He isn't comfortable wrestling (even with a protective belt) with it in.

I hope that helps.
Cheryl
05-31-2013, 08:38 PM   #83
Farmwife
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Yes, that's the biggest thing for me. I can feed Grace even when she doesn't feel like it. Her nasty tasting meds can go in her g-tube.
We do bolus feeds, most of the time now. If she goes down hill, I'll start doing longer feeds.
06-01-2013, 12:12 AM   #84
Spooky1
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Yes, definitely good for feeding meds through. Carol, try not to be apprehensive, a proper surgery is far worse. Mind, children get over things quick. good luck
06-01-2013, 03:05 PM   #85
Mylittlesunshine
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Giving Lucy the mickey has been the best thing
Not only for the feeding, but also the meds,
And yes as FW said venting is really good
As Lucy suffers badly with gas, as before
The mickey gave her a lot of pain and trouble.

Carol how is Jayden doing with feeds?
I'm sure if you decide to go ahead with
Mickey you and her will find it a lot easier.
Hugs
06-01-2013, 03:24 PM   #86
Ki3
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Hey, I know I only posted like once on this, but I feel awkward being subscribed to this now as I've got my Ng tube out, but reading your posts, I didn't realise sometimes you get g tubes and stuff done as a permanent thing? I had my tube for the six week diet.. I didn't realise sometimes you need them for other problems? Sorry if im being dumb..i dont know much :/
06-01-2013, 07:49 PM   #87
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No your not being dumb Ki3. Grace needs her g-tube full time because of her Eos disease and being so young. She still have a long road and the top priority has to be to keep her growing. So the g-tube is being used.
HOWEVER, a word of caution, if you have crohn's you do run the risk of crohn's flaring down the road where the g-tube was put. Still we felt it was worth the small risk.
06-02-2013, 01:05 AM   #88
vtfamily
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Hey, I know I only posted like once on this, but I feel awkward being subscribed to this now as I've got my Ng tube out, but reading your posts, I didn't realise sometimes you get g tubes and stuff done as a permanent thing? I had my tube for the six week diet.. I didn't realise sometimes you need them for other problems? Sorry if im being dumb..i dont know much :/
Ki3,

It's all a learning process, so don't knock yourself. Ultimately, it's all about nutrition...giving each person the best opportunity to receive the most nutrition possible.

As far as "permanent"...although the g-tube is placed surgically, it can be removed at a later date with little fuss. Though, I have to say that Gus does not want to have his g-tube removed. Even if he weren't using it for nutrition, he would want to keep it for meds and contrast for the CT/MRI scans.

Even Gus' PICC line (use to administer Total Parental Nutrition) had be inserted on an outpatient basis and can be removed when that form of nutrition is no longer necessary.

Cheryl
06-02-2013, 02:15 AM   #89
Ki3
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Oh ok thanks. They said to me about nutrition when I came off my tube and I'm meant to drink one to two drinks a day...but I dont.. Lets just hope they think I weigh enough so they dont give me a tube!
(P.S- Cheryl, I know it sounds weird, but Gus is lucky to have a PICC line, I asked about it when I was going to start remicade(but never started) and they wouldn't let me, they said I had to have a port because my veins are difficult. I really don't want a port.
06-02-2013, 02:26 AM   #90
vtfamily
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Ki3,

Gus did Remicade infusions for a year and a half...no port or PICC line. The just put the IV in when we arrived and removed when we were finished.

I'm sorry to hear your veins are going to make the process more difficult than need be.

Take heart though. Remicade was the first medicine that really helped us manage Gus' pain! Unfortunately, it didn't do much to halt his disease. Still working on that. I'll say a prayer for you that you have wonderful success with Remicade.

You'll have to share your port stories.

Take care.
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