This is the motto of a website I stumbled upon the other day. It is called Feeding Tube Awareness. I especially love their Facebook page!
It is good for me to see all the mom's dealing with feeding tubes for a million different reasons. I don't live near anyone I know that has a child with a feeding tube. It is so frustrating some times because there is so much I don't know. I've already learned tons just by reading what others do. It has helped me realize I need to be more proactive with my insurance. I also enjoy that they discuss eating problem, suggesting foods and ways to encourage eating.
I don't know if there are any others affected by Glycogen Storage Disease, but I hope to find out soon.
Showing posts with label gtube. Show all posts
Showing posts with label gtube. Show all posts
Thursday, March 31, 2011
Wednesday, February 23, 2011
We would have to replace it every time it came out. It was traumatic for him and us. I think in some ways it was traumatic to anyone having to look at him too. Little kids always wanted to know what it was and were so concerned and careful.
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| We are so happy his belly isn't this distended any more :) |
In this procedure, the surgeons move the stomach up to the abdominial wall and stitch there. His stomach will stay attached there, forever. If I understood correctly it is done by passing a laproscopic tube through the esophagus and attaching it 'blindly' from the inside. I believe, this is the "easy" way. Evan's procedure was a little different. His liver at that time took up a majority of his abdominal cavity. His stomach was being blocked by the liver and intestines. He had to have a little extra planning done to ensure that no damage was done to those organs. Some children needing this tube have to have a lot more rearranging done to their organs, we were fortunate not to have this complication.
The stomach is stitched permanently so that
When we no longer need it, it about 10-12 years I'm guessing, We can just take it out and it should close up on it's own.
A friend of mine from Jr High/ High School, that I have become reaquainted with through facebook, reached out to me when she found out that Evan would need a feeding tube. Her daughter had one for years, for other reasons. She is a a miracle baby that survived birth at 25weeks and her story is amazing. You can read her story here.
This little girl recently got her gtube removed. All appeared to be closing well until one day her parents noticed a strange wet spot on her shirt. The stoma appears not to have closed all the way on her and she will be need a small surgery to repair it. I think that with Evan having his for so long he will most likely have to use this procedure as well.
Wednesday, January 5, 2011
The nurses swore to me it almost never happens. I should have known that Evan always played against the odds.
On Dec 23, Evan woke up with the scar at his gtube site looking really red. I'm a little obsessed with keeping it looking normal and immaculate so I was a little confused by it's redness.
I guess I should back track a little and explain that they have a tendency to leak stomach fluid. The site needs to be cleaned a few times a day and kept dry. I also apply an ointment. I keep intending to do a post about it.
I added some extra ointment and when on with the day. At noon I checked it again and this time it was more red and filled with fluid, like a blister. At that point I realize that its has done the 'impossible' and become infected. I put some Neosporin on it and call the surgical nurses to get some advice. They basically just said if it looks worse go to the ER.
YAY! the ER. Of course, its the day before Christmas Eve, people who fall ill during holidays have no other choice.
By 6pm his blister was about 1cm x 2cm and full of puss. I decide then that I will make the hour drive to the Children's Hospital. We have an ER that is closer but I don't trust them a whole lot and at least if there is a real problem, doctors who know us are close.
While getting my sweetie pie ready to go, it bursts. Gross, but nothing I can't handle.
So we finally arrive, the poor little guy had to endure a little more pain from the buckle on his car seat rubbing against it.
They were slow luckily and we are seen quickly. The doctors are a little peaked because they get to see a patient with a rare disease but overall are quite bored with the infection. They are glad that it opened on its own (they would have lanced it) and doesn't appear to be getting worse.
The diagnosis: probably a staph infection.
The treatment: Neosporin and some gauze!
WOW good thing I went to the ER.
Well, that visit will be chalked up to a paid medical lesson. Next time I will lance it myself, and slap some more Neosporin on it. If he gets a fever or spreading redness, then I will go to the ER.
It is still healing, slowly, two weeks later, so that gives me a little concern that it is getting too small and cutting into the skin. I just don't have enough experiences like this one to really say what is going on or what to do.
I'm planning on attending a class that is offered at the hospital as a little refresher and now that I've lived with it a while all the question I have now that I didn't know to ask before.
I hope all of my "life learning" with this will pay off for someone else one day. This was one time I wished I could get practical Mom advice.
On Dec 23, Evan woke up with the scar at his gtube site looking really red. I'm a little obsessed with keeping it looking normal and immaculate so I was a little confused by it's redness.
I guess I should back track a little and explain that they have a tendency to leak stomach fluid. The site needs to be cleaned a few times a day and kept dry. I also apply an ointment. I keep intending to do a post about it.
I added some extra ointment and when on with the day. At noon I checked it again and this time it was more red and filled with fluid, like a blister. At that point I realize that its has done the 'impossible' and become infected. I put some Neosporin on it and call the surgical nurses to get some advice. They basically just said if it looks worse go to the ER.
YAY! the ER. Of course, its the day before Christmas Eve, people who fall ill during holidays have no other choice.
By 6pm his blister was about 1cm x 2cm and full of puss. I decide then that I will make the hour drive to the Children's Hospital. We have an ER that is closer but I don't trust them a whole lot and at least if there is a real problem, doctors who know us are close.
While getting my sweetie pie ready to go, it bursts. Gross, but nothing I can't handle.
So we finally arrive, the poor little guy had to endure a little more pain from the buckle on his car seat rubbing against it.
They were slow luckily and we are seen quickly. The doctors are a little peaked because they get to see a patient with a rare disease but overall are quite bored with the infection. They are glad that it opened on its own (they would have lanced it) and doesn't appear to be getting worse.
The diagnosis: probably a staph infection.
The treatment: Neosporin and some gauze!
WOW good thing I went to the ER.
Well, that visit will be chalked up to a paid medical lesson. Next time I will lance it myself, and slap some more Neosporin on it. If he gets a fever or spreading redness, then I will go to the ER.
It is still healing, slowly, two weeks later, so that gives me a little concern that it is getting too small and cutting into the skin. I just don't have enough experiences like this one to really say what is going on or what to do.
I'm planning on attending a class that is offered at the hospital as a little refresher and now that I've lived with it a while all the question I have now that I didn't know to ask before.
I hope all of my "life learning" with this will pay off for someone else one day. This was one time I wished I could get practical Mom advice.
Monday, December 20, 2010
I was waiting...!
Well, it finally happened. The moment I had dreaded. There always has to be a first, right?
Yesterday, after church, I was changing Evan and getting him ready for a nap. Evan was standing next to me, naked and I saw something dribble on the ground out of the corner of my eye. I thought he had spit some food out of his mouth. When I looked up, I saw more food goo on his belly and much to my surprise, his Gtube button dangling from medical tape!!!
I'm not exactly sure what happen but I'm assuming he pulled on it a little too hard. All at once I was in a slight panic. It is very strange to see a hole in your child's gut, even if it is only about a centimeter wide.
I sent one child to call their Dad, he was still at church. One child to get the emergency kit. One child to hold his arms down, the other the legs. Then began the replay in my mind of all the information they give you in the hospital for situations just like this. You see, the 'button' is held in place by a small water balloon that holds about 1tsp of water. Over time balloon can deflate (which is what was the case for us) and it is flexible so depending on the activity level of your child or even the curiosity of other children, they are bound to come out.
The nurses try to prepare you to handle the situation. We watched videos, had someone come and give us a more hands on training, etc. But it is a lot of information, and many times I was flabbergasted thinking I didn't have to have any medical training to do the things they are telling me needs to be done.
We keep an emergency kit with us at all times. Time is of the essence. Because the stomach is a muscle, the hole can close in there within 10 minutes.
I was not able to get the tube back in. I tried and tried and it seemed just ever so slightly too big. I really wasn't wanting to go to the ER. Of course, as life would have it, in the middle of this chaos his alarm for his cornstarch treatment sounded- queue more panic!
In the emergency kit there are some catheters of varying size that are used to hold the hole open while we seek medical attention in the event the button can't be replaced. I decided that like or not this is what I'm going to have to resort to.
Luckily, my knight in shining armor came home. He was little less affected by the drama and was able to get the button in with a little more patience and pressure than I was. Crisis averted. I fumbled through refilling the balloon, and got him taped back up, with extra tape of course. And then prayed we'd done it right.
All I can say now is WHEW! I never want to do that again but I know this wont be the last time. This experience will make it a lot easier for the times when I have to change it even just for wear and tear.
Yesterday, after church, I was changing Evan and getting him ready for a nap. Evan was standing next to me, naked and I saw something dribble on the ground out of the corner of my eye. I thought he had spit some food out of his mouth. When I looked up, I saw more food goo on his belly and much to my surprise, his Gtube button dangling from medical tape!!!
I'm not exactly sure what happen but I'm assuming he pulled on it a little too hard. All at once I was in a slight panic. It is very strange to see a hole in your child's gut, even if it is only about a centimeter wide.
I sent one child to call their Dad, he was still at church. One child to get the emergency kit. One child to hold his arms down, the other the legs. Then began the replay in my mind of all the information they give you in the hospital for situations just like this. You see, the 'button' is held in place by a small water balloon that holds about 1tsp of water. Over time balloon can deflate (which is what was the case for us) and it is flexible so depending on the activity level of your child or even the curiosity of other children, they are bound to come out.
The nurses try to prepare you to handle the situation. We watched videos, had someone come and give us a more hands on training, etc. But it is a lot of information, and many times I was flabbergasted thinking I didn't have to have any medical training to do the things they are telling me needs to be done.
We keep an emergency kit with us at all times. Time is of the essence. Because the stomach is a muscle, the hole can close in there within 10 minutes.
I was not able to get the tube back in. I tried and tried and it seemed just ever so slightly too big. I really wasn't wanting to go to the ER. Of course, as life would have it, in the middle of this chaos his alarm for his cornstarch treatment sounded- queue more panic!
In the emergency kit there are some catheters of varying size that are used to hold the hole open while we seek medical attention in the event the button can't be replaced. I decided that like or not this is what I'm going to have to resort to.
Luckily, my knight in shining armor came home. He was little less affected by the drama and was able to get the button in with a little more patience and pressure than I was. Crisis averted. I fumbled through refilling the balloon, and got him taped back up, with extra tape of course. And then prayed we'd done it right.
All I can say now is WHEW! I never want to do that again but I know this wont be the last time. This experience will make it a lot easier for the times when I have to change it even just for wear and tear.
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