Feeding Tubes-Pros and Cons

[grantsmom]

Getting the tube was the best decision I have ever made for Grant. It has been almost a year and he has gained 11pounds. He had the long tube for 2months before he got the mickey button.
<br /> The worst part has been putting the enzymes through the mickey button. He wont take them by mouth in the morning so I had no other choice but to put them through the tube. Everything was great until Pancrecarb was taken off the market. Now we do creon which tend to clog the tube. Also the mickey button fell out once at the babysitters and by the time she noticed it had already started to close. After trying two local hospitals that would not help us we were forced to go the childrens an hour away. There they were able to stretch the opening and replace the button. Now I change the button every 2-3months. But overall the tube has been a good decision.

 

[hmw]

The Enzyme Problem has been very frustrating, I agree!! It was very tricky (and very MESSY) to figure out how to get the Creon to go through the tube. She seems to absorb her feeds better now getting the second dose halfway through the feed before I go to bed and we all get more sleep now (she wasn't waking up well to take them orally when the feed finished and then couldn't wake up for school) but the Creon is a problem. I really feel for those who are far more dependent on tube feeds than we are and who cannot take the enzymes orally.

So yes, this was part of the learning / adjustment process we went through in the early months... but as I posted above & in the other thread... one of the best decisions we have made for her.

 

[hmw]

The Enzyme Problem has been very frustrating, I agree!! It was very tricky (and very MESSY) to figure out how to get the Creon to go through the tube. She seems to absorb her feeds better now getting the second dose halfway through the feed before I go to bed and we all get more sleep now (she wasn't waking up well to take them orally when the feed finished and then couldn't wake up for school) but the Creon is a problem. I really feel for those who are far more dependent on tube feeds than we are and who cannot take the enzymes orally.

So yes, this was part of the learning / adjustment process we went through in the early months... but as I posted above & in the other thread... one of the best decisions we have made for her.

 

[hmw]

The Enzyme Problem has been very frustrating, I agree!! It was very tricky (and very MESSY) to figure out how to get the Creon to go through the tube. She seems to absorb her feeds better now getting the second dose halfway through the feed before I go to bed and we all get more sleep now (she wasn't waking up well to take them orally when the feed finished and then couldn't wake up for school) but the Creon is a problem. I really feel for those who are far more dependent on tube feeds than we are and who cannot take the enzymes orally.
<br />
<br />So yes, this was part of the learning / adjustment process we went through in the early months... but as I posted above & in the other thread... one of the best decisions we have made for her.