we had Emily's put in about 1 1/2 years ago at age three. She was around 20% and relatively healthy. However, it was a job getting her there and if you tracked her weight, any sniffle, not feeling well, etc would result in weight loss. Also, she didn't look healthy, still looked a little malnorished. We have friends with kids that are small, are below 5% on the chart. But that's their normal genitic spot and they look very healthy, just small. Emily wasn't like that, she appeared lacking. Also, that was when they came out with the new study saying you needed to be at 50% to maintain good healthy lungs. Thats when we went with the tube. I think of all her treatments its the best thing we've done for Emily. That maybe a stretch, but its one of the top things we have done.
As far as enymes. She takes Creon, takes 4 (???) before bed and then 4 (????) when she wakes up. I can't remember the exact number. The feeding tube runs all night.
I strongly encourage it. It seems drastic and there's a stigma with it. Like they are truely sick if they need a tube. But as far as I can tell, there are no real complications with it, other than standard surgery issues. After the sugery, you have a hole to your stomach, which you have anyway with your mouth and throat. We asked what happens if big brother decides to pour sand down her tube? Doctor looked at us and said "same thing as if she ate sand." There is little care, but some getting used to. Main thing is it affects your schedule because of the long feeding time. However, CF kids affect your schedule anyway with all their treatments.
What's nice is you can also feed her when she's sick and doesn't feel like eating. Emily seems to overheat real easy, well, just pour some gatoraid down her tube and she's off and running again.
As far as enymes. She takes Creon, takes 4 (???) before bed and then 4 (????) when she wakes up. I can't remember the exact number. The feeding tube runs all night.
I strongly encourage it. It seems drastic and there's a stigma with it. Like they are truely sick if they need a tube. But as far as I can tell, there are no real complications with it, other than standard surgery issues. After the sugery, you have a hole to your stomach, which you have anyway with your mouth and throat. We asked what happens if big brother decides to pour sand down her tube? Doctor looked at us and said "same thing as if she ate sand." There is little care, but some getting used to. Main thing is it affects your schedule because of the long feeding time. However, CF kids affect your schedule anyway with all their treatments.
What's nice is you can also feed her when she's sick and doesn't feel like eating. Emily seems to overheat real easy, well, just pour some gatoraid down her tube and she's off and running again.