Mickey Button questions?

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.

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.

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.

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.

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.

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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.

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).

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.

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.)

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

Even for someone who is using the tube for the only source of nutrition, once a week checking the water in the balloon is standard. And the length of the tube itself is very important. My son has a 16fr 1.7 MicKey in his Gtube stoma and a 16fr 2.0 MicKey in his Jtube stoma. So even in the same kid different locations can require different lengths.

thank you all for your replies... I changed my dd's button and the leaking stopped. I'm not quite sure what happend to the button. I checked it and it was holding water. It did not appear to have anything wrong with it. Changing it was not as bad as I thought it would be. It took just a few seconds from taking the old button out and putting the new one in. I think maybe some of the leakage is due to the gratulation (sp?) tissue grows so quickly... is there something that I can buy to help stop this. Her gi doc is over 3 hours away and my dd does not travel well at all. So it is difficult to get to him once a week or so..

THere was something we put on DD's to help with the granulation build up. I can't remember what it was. Perhaps if you call they will write you a scrip over the phone.