image

image

 
JOIN 800,000+ MEMBERS JOINJOIN Cancel
image






Adoption Forums®

Members List Photos Events Local Adoption Support Search Arcade Reviews Membership Upgrade
Welcome to the Forums. Register
If this is your first visit, be sure to check out the FAQ. You may have to register before you can post or search: click here to proceed. To start viewing messages, select a forum below that you would like to view or click View All of Todays Posts.
Forum Categories
User Name
Password

Reply
 
Thread Tools Search this Thread Display Modes
  #1  
Old 01-06-2012, 04:17 AM
hermommy's Avatar
hermommy hermommy is offline
Senior Member
Join Date: Aug 2008
Posts: 218
Total Points: 34,468.42
Donate
Mickey Button questions?

My daughter will be getting the Mickey Button soon. Right now she is not on a feeding tube. She eats by mouth but it is just not enough. I am new to all this so I have a couple questions. I have tried to research as much as I can but I am not finding what I really need.

1. what is the process of having this button in?

2. How much pain will she be in. She is only 2 with severe brain damage?

3. Do they put this button in the day of surgery, or do they put a tube in then a few weeks later put the button on?

any info would be greatly appreciated.
__________________
lisenced 11/2006
AD - born 3-10-07 placed 3-13-07.....bmom relinquished 6/2008.... final Jan. 28 2010

baby M. born 7-28-09 home 8-21-09(emergency placement) left 10-09 home for good 7/2010





fd baby A ..newborn 11-5-08... went to relative 3-25-2010
Reply With Quote
Adoption Community Information
Find Your Birth Family
Washington
Click here to visit Birth Family Finders
Our association with investigators and researchers nationwide allows us to find missing birth family members. We're fast, affordable and all investigations are handled by a personal search specialist with your privacy in mind.
Birth Family Finders
 

  #2  
Old 01-06-2012, 06:50 AM
crick's Avatar
crick crick is offline
Just a member

Join Date: Sep 2003
Posts: 16,741
Total Points: 51,983,078,195,170.30
Donate
Bumping up for the morning crowd.

Hopefully Lylac sees this among a few others that will be able to help.
Reply With Quote
  #3  
Old 01-06-2012, 08:51 AM
blminter blminter is offline
atlanta mom
Join Date: Mar 2008
Posts: 296
Total Points: 63,923.35
Donate
gtubes/buttons

i am a pediatric nurse practitioner responding. the process depends on the surgeon or gastroenterologist, but usually they put a scope down the esophagus and then go in through the abdomen.

buttons are not usually placed until the initial healing is complete. may be as long as 6 weeks. again depends on the GIs preference. you will have a longer extension tubing in place until then.

pain will be there, but most kids do really well. some common problems in the long run are gastric secretions irritating the skin about the site. granulation tissue buildup. you'll learn pretty quick about how to take care of it. it sounds harder than it really is. some kids never have problems.

other things to consider is if they are doing other procedures like a fundoplication-which is sometimes done with a gutbe placement. it tightens the esophageal sphinctor so reflux is controlled. that's a little bit more involved surgery, but the approach is the same.


HTH.
Reply With Quote
  #4  
Old 01-06-2012, 08:53 AM
blminter blminter is offline
atlanta mom
Join Date: Mar 2008
Posts: 296
Total Points: 63,923.35
Donate
Gastrostomy Tube (G-Tube) Home Care, Cincinnati Children's Hospital Medical Center
Reply With Quote
  #5  
Old 01-06-2012, 10:39 AM
momof9wantingmore's Avatar
momof9wantingmore momof9wantingmore is offline
Senior Member
Join Date: Jan 2008
Posts: 605
Total Points: 66,879.65
Donate
My daughter is also severely brain injured. She has a Mickey button. The surgery was same day and she was initially given a bard button which is just a different kind of port. She used it from the very first day, she now has a Mickey as she outgrew the bard. The Mickey needs to be replaced every 3-6 months and they will teach you how to replace it, although that sounds intimidating it is very easy to do. The surgery is usually a day surgery and my daughter was only given tylenol for pain and she did very well. Good luck and you can pm me if you have any questions I will be glad to help.
__________________
Mom of 11
DH Married for 25 years
BD M-11/27/78
BS T-1/23/80
BD S-6/17/1981
BS N-10/28/1981
BS A-9/29/1983
BD E-10/27/1986
AS D-8/17/2000
AD M-12/25/2001
AD A-12/18/2003
AS D-9/12/2008
AD E-2/8/2010
FD-placed 10/09 Left to relative placement 5/01/2010 We miss her!!
Reply With Quote
  #6  
Old 01-07-2012, 02:25 PM
BestMomEver BestMomEver is offline
Senior Member
Join Date: Sep 2004
Posts: 5,844
Total Points: 178,759.18
Donate
I am sure you are dreading it. We did everything we could for years to avoid a g-tube. The first night with it, I realized I had wasted year of my and her life fighting the g-tube when it would have significantly increased our quality of life. The surgery to put it in takes less time than it does to smoke a cigarette (ask me how I know ). They literally put a tube down her throat into her stomach with a light and then punch through the skin with a glorified paper puncher. The tube (its usually a tube but I have heard of them putting the button in right at the beginning) goes in the hole and thats it. The tube is actually like a T. once its in, the top of the T folds out and holds it in place. The button is held in place by a balloon. The button has 2 external ports. One is for food and one is to fill and replace the saline in the balloon that holds it in place. If your kid is really acidy, the balloons (and thus the button) does not last nearly as long as it is supposed to. I think we had to wait 12 hours to use it with anything besides water. Its a godsend for keeping a kid hydrated when they are sick. My DD actually ate fine and enough once she came out of her coma but since we already had the tube we decided to have it replaced with a mic-key. It lasted about 6 months before it came out in the middle of the night and closed before we noticed it was out. Because the second surgery is more extensive, we never had it replaced. We figure we can do it if we need it. We just used tylonol for pain from the surgery also.

If you get the button from the start (which it sounds like you might from your description) just make sure you know how to replace it and have a spare before you leave the surgery. Especially the first few months, the hole will close up fast (like 20 minutes fast) if you don't replace it. We actually found it very hard to find spares here in pediatric sizes.

Last edited by BestMomEver : 01-07-2012 at 02:30 PM.
Reply With Quote
  #7  
Old 01-09-2012, 01:07 PM
hermommy's Avatar
hermommy hermommy is offline
Senior Member
Join Date: Aug 2008
Posts: 218
Total Points: 34,468.42
Donate
Thank you all for the info. I am scared to death of this. I dont have a strong stomach so the thought of it coming out kills me. I will be going Friday for the first appointment. My DD's home health nurse has been trying for about a year to get me to have the surgery done. She has told me that it would make my life so much easier. I kept thinking that if she is eating there is no need for it. However, one week before Christmas my dd was life flown out to childrens hospital and put on breathing tube. She was breathing to hard and fast and her doc said that she wouldn't last long. I was told she was severly dehydrated. I thought I was feeding enough so this floored me. I felt like a bad mom. Needless to say even with my weak stomach I am now welcoming the button. I have to know that she is getting enough nutrition. Sorry for my rant.....

Do you have to get special formula to go into the tube.
__________________
lisenced 11/2006
AD - born 3-10-07 placed 3-13-07.....bmom relinquished 6/2008.... final Jan. 28 2010

baby M. born 7-28-09 home 8-21-09(emergency placement) left 10-09 home for good 7/2010





fd baby A ..newborn 11-5-08... went to relative 3-25-2010
Reply With Quote
  #8  
Old 01-09-2012, 07:09 PM
momof9wantingmore's Avatar
momof9wantingmore momof9wantingmore is offline
Senior Member
Join Date: Jan 2008
Posts: 605
Total Points: 66,879.65
Donate
My daughter is given pediasure, when she gets older it will be Ensure. You should get a nutritionist assigned to you by the company that sends you your supplies, she will tell you exactly how much to feed her and how much water to give to keep her hydrated, she has been wonderful for us because I always know if I follow her directions she will be getting what she needs. It really will make your life so much easier and your daughter will always get what she needs, you will never have to guess.
__________________
Mom of 11
DH Married for 25 years
BD M-11/27/78
BS T-1/23/80
BD S-6/17/1981
BS N-10/28/1981
BS A-9/29/1983
BD E-10/27/1986
AS D-8/17/2000
AD M-12/25/2001
AD A-12/18/2003
AS D-9/12/2008
AD E-2/8/2010
FD-placed 10/09 Left to relative placement 5/01/2010 We miss her!!
Reply With Quote

  #9  
Old 01-10-2012, 06:45 PM
BestMomEver BestMomEver is offline
Senior Member
Join Date: Sep 2004
Posts: 5,844
Total Points: 178,759.18
Donate
You can put anything in tube that will fit! But it wouldn't make such sense to give anything other than formula, water or meds. You won't need to use anything special if she is also eating regular food. You might be able to only put water in through the tube (which makes the whole process easier because you don't have to clean and flush the ports). You definately will want a good nutritionist to get you started until you figure out how to balance everything. I know people who puree regular food and put it in there. Honestly, to never have to worry about the stress of feeding a child again is just heavenly. You really can't imagine the stress it takes out of your life. For us, the big difference was not having to worry that we wouldn't be able to get enough food into DD to give her her seaizure meds or if she was on a puking kick, trying to figure out how much of the seizure meds we had just lost and should replace before we let her go to bed. By the time we got the button, we never used ours for anything other than water and meds.

When DD's tube came out unexpectedly it was disgusting. Enough to make me gag and I have a super strong stomach. But her balloon rotted through so the smell was extra special. They do come out if your child is mobile. Its just going to happen. If you make it to the 6 month mark, the hole will be healed enough (think pierced ears) that you will probably have a couple of hours to get it back in. But another benefit is that you can actually use the mickey in reverse to drain the tummy also to keep a kid from puking. I would say the ick factor is about as bad as puke.

You will get over the grossness of it a little. You should find out now if she will be getting the button initially or if she will get a tube that they will convert to a button later. The tube is a bit grosser to look at I think.
Reply With Quote
  #10  
Old 04-06-2012, 11:36 AM
hermommy's Avatar
hermommy hermommy is offline
Senior Member
Join Date: Aug 2008
Posts: 218
Total Points: 34,468.42
Donate
my dd has a mickey button. I was holding her and i felt a big wet spot on me. I checked her and it came from the button. I checked the water in the balloon and it was 5cc. (what was put into it earlier that day. So it had to be leakage right? Well a couple of hours later I gave her meds and started feeds. I checked her button and the pad around her button had her meds and formula all over it. It has always had a small leakage to it but this is a lot more than normal leakage.. Am I doing something wrong?
__________________
lisenced 11/2006
AD - born 3-10-07 placed 3-13-07.....bmom relinquished 6/2008.... final Jan. 28 2010

baby M. born 7-28-09 home 8-21-09(emergency placement) left 10-09 home for good 7/2010





fd baby A ..newborn 11-5-08... went to relative 3-25-2010
Reply With Quote
  #11  
Old 04-09-2012, 07:53 AM
MamaTay's Avatar
MamaTay MamaTay is offline
Senior Member
Join Date: Aug 2010
Posts: 671
Total Points: 69,359.10
Donate
Quote:
Originally Posted by hermommy
my dd has a mickey button. I was holding her and i felt a big wet spot on me. I checked her and it came from the button. I checked the water in the balloon and it was 5cc. (what was put into it earlier that day. So it had to be leakage right? Well a couple of hours later I gave her meds and started feeds. I checked her button and the pad around her button had her meds and formula all over it. It has always had a small leakage to it but this is a lot more than normal leakage.. Am I doing something wrong?

Not necessarily doing anything wrong no. My son has a MicKey both as a Gtube and a Rue en Y Jtube. Both leak like crazy and we have tried everything to get them to stop. Things to try are; 1. Make sure the balloon still has the 5cc in it by extracting the water and replacing it. 2. Look around the site and make sure there is no granulation tissue. 3. Make sure the length of the tube is correct. There shouldn't be a lot of "play" in the length. If there is, an extra pad or two can sometimes help the leaking.

If leaking persists, make sure you are changing out those pads very often. Wet stomach acid against skin causes nasty irritation. We sometimes use Desiden or something like that on the skin around the site to keep it from getting burned by the leaking acid.
__________________

AS "Mickey" 4yo
BioS "Snurf" 13yo
Married to "UberGeek"

Former Placements: "Muscle Man" 16yo RU 2012, "Smiley Guy" 10yo Temp EP 2013
Reply With Quote
  #12  
Old 04-09-2012, 08:43 PM
BestMomEver BestMomEver is offline
Senior Member
Join Date: Sep 2004
Posts: 5,844
Total Points: 178,759.18
Donate
Its still fairly new if I remember correctly. I think I would put a call in to your GI doc for an appointment. She may just need a bigger size button. Especially if she is growing like crazy from all the extra calories she is getting. Or you may need to have more water in the balloon. But I can't tell you that without knowing what size she currently has. The doctor would probably be able to tell you over the phone if you should fill the balloon more. My DD's never leaked but she had it put in when she was still significantly bigger from steroids from being in a coma. She really shrunk down after she had it put in.

ETA, if the balloon doesn't have 5cc's in it when you extract the water tonight, I would take her to the emergency room to be seen tonight if you don't know how to change it yourself or do not have a spare. If it has less than 5 cc tonight, you really need to change out the button before you put her to bed tonight. The hole is still to new to stay open if it falls out in the night and you don't catch it right away. (Don't ask me how I know this).

Last edited by BestMomEver : 04-09-2012 at 08:49 PM.
Reply With Quote
  #13  
Old 04-13-2012, 06:34 PM
Lylac's Avatar
Lylac Lylac is offline
Senior Member

Join Date: Jan 2006
Posts: 4,176
Total Points: 21,914,113,426.01
Donate
The only other advice that I have is..Most buttons only require the 5 ml, but Some buttons take 6 ml to be filled The extra 1ml wouldn't hurt a 5 ml one either. I'm thinking that the button sounds too big..In big I mean the length. Like Abbie's is a 14fr 2.3, Nates is a 14fr 1.7. If I was to put Abbie's in Nate, he would leak like crazy due to the depth of the stoma. nd of course Nates wouldn't fit all the way through Abbie's stoma.

I would tape, tape and tape some more before bed time, just until you can get the problem figured out..

My bet is the button is just too long..If it had 5ml of water in the balloon.

Came back to say, draw all of the water out of the balloon, then put 5ml in.
__________________
Mom to four Special Needs cuties...
Three survivors of Shaken Baby Syndrome and one with Bilateral Open Lipped Schizencephaly..
All four perfectly perfect to us.

Lyla age 10
Bremon age 9
Nate age 7
Abbie age 6

I support Special Needs Adoption and Shaken Baby Syndrome awareness
http://www.myspace.com/msblaazer

Last edited by Lylac : 04-13-2012 at 06:36 PM.
Reply With Quote
  #14  
Old 04-16-2012, 02:17 PM
BestMomEver BestMomEver is offline
Senior Member
Join Date: Sep 2004
Posts: 5,844
Total Points: 178,759.18
Donate
Interesting. I assumed different sized buttons took different amount. We were told to put 6 in DD's and check it weekly and it had less than 5 we had a leak and it needed to be replaced. (We didn't really use the button though so I am not sure checking once a week would be adaquate for someone who uses it for their only source of nutrition.)
Reply With Quote
  #15  
Old 04-17-2012, 01:23 PM
Lylac's Avatar
Lylac Lylac is offline
Senior Member

Join Date: Jan 2006
Posts: 4,176
Total Points: 21,914,113,426.01
Donate
If the water is a little low, it doesn't automatically mean it has a leak. The water evaperates a tiny bit over time also. Normally if it's a leak it wouldn't have any water at all..or thats been our case
__________________
Mom to four Special Needs cuties...
Three survivors of Shaken Baby Syndrome and one with Bilateral Open Lipped Schizencephaly..
All four perfectly perfect to us.

Lyla age 10
Bremon age 9
Nate age 7
Abbie age 6

I support Special Needs Adoption and Shaken Baby Syndrome awareness
http://www.myspace.com/msblaazer
Reply With Quote
Reply

« Previous Thread | Next Thread »

Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Points Per Thread View: 1.00
Points Per Thread: 15.00
Points Per Reply: 5.00


All times are GMT -7. The time now is 09:41 AM.