This is Feeding Tube Awareness Week. This time last year, I would have never guessed that I would be spreading awareness about feeding tubes. In fact, this time last year we were in the middle of our six week Day Feeding Program at Mt. Washington Pediatric Hospital. Autumn went to the program everyday for six weeks, having 3 meals a day there. We entered the feeding clinic after doing 2 years of feeding therapies with a speech therapist and an occupational therapist.
Autumn was a tough case. Like everything else in her life, she was inconsistent. There was no real progress. Autumn wasn't not eating for behavior reasons( although she is very selective)she just often didn't feel well enough to eat. Because of her mitochondrial dysfunction, fasting is a problem. Even going for the typical eight hours of sleep without food caused increased problems.
In May, after being discharged from the feeding clinic for 6 weeks, Autumn had lost more weight. Her GI doctor decided it was time to place a g-tube for failure to thrive. I was crushed. As soon as I got into the car, the tears started falling. I felt like a parental failure. How could I not get my child to eat enough to the point of needing a feeding tube? The six weeks of scheduling and sacrificing activities to complete the Feeding Day Program felt like a waste. Everything seemed to be happening so quickly.
Fast forward 9 months, and we are so happy to have the feeding tube. We no longer have to stress about Autumn not feeling well enough to eat. We are able to keep her hydrated. At night she gets a continuous feed as she sleeps. We no longer gave to find creative ways to get her to eat uncooked corn starch before bed(corn starch is a complex carbohydrate that gives the body something to break down during the nighttime fast). Her medications that taste terrible can be placed directly into the tube. No more wondering how much of her seizure meds ended up spit out instead of in.
Ironically, she eats more by mouth now than she ever has. We think the continuous feeds allow her to wake up feeling good enough to be ready to eat by mouth.
People often ask how long she will need the feeding tube. We really don't know for sure, but I am guessing it will be her friend for life. Mitochondrial dysfunction does not have a cure. I have learned that not everything that seems bleak and drastic is a bad thing. It could be a blessing in disguise.
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