So this week has been very difficult. Zach has had his NG tube for aobut 7 weeks now and for the first 5 weeks did so well on it, he never tried to mess with it. As of today we have had to replace it 4 times in the past 10 days. He figured out how to take it out, so at night he pulls it out and I get to wake up to it hanging from his face and formula all over his bed.
We spoke to Dr Young a couple of times this week and he thinks it is time to go ahead with getting a G tube. He set up for us to meet with Pediatric Surgeon, Dr. Petty at Baptist on Tuesday at 11am to discuss when to schedule his surgery. We know it will be easier and better on him but it is still scary because this is major surgery. Dr Young feels that since his disorder is complex and we can't find any food yet he can eat (he failed eggs) that the tube feedings will be long term, how long term we don't yet but probably at least a year.
Thats all I know for now, hopefully we can keep the NG tube in over the weekend and get some answers and dates next week.