Today I cleaned my house, not because it needed it, because that’s what I do when I’m stressed out and feel that parts of my life are out of my control. Today we meet with a gastrointestinal surgeon who will operate on our daughter next week.
Our daughter, Olivia has had severe difficulty with digestion since birth and we have been told it is attributed to the fact she has Cerebral Palsy. Olivia’s stomach doesn’t empty properly. It will hold food in it for hours after she has eaten. This usually causes her to vomit frequently and as a result, she has trouble gaining weight. We have tried everything over the last 4 years. We have sat down and worked with feeding therapists and have tried every recommendation they suggested. Nothing works! So now, after 4 years of struggling, Olivia has been deemed “failure to thrive”. This means she is dangerously underweight for her age and height. If she were to get sick, her body wouldn’t have the reserves necessary to help fight off any germs. We have been guided to consider Olivia may need a G-tube for feeds.
This decision process killed me emotionally. My husband and I struggled if this was the right choice for her. We questioned ourselves, did we exhaust all possible avenues? We struggled with this decision for over a year. After tirelessly exhausting all professional views and speaking with other families whose children have G-tubes and the benefits they’ve seen it do for them, we decided to move forward with it.
So today we meet with the surgeon. I am sick to my stomach with stress. I know this is the best for her, but it’s the one more thing to scar her beautiful little body. It’s the one more time she will need to be sedated. It’s the one more time we call a hospital our home for a week. It’s all of that and sadly I know it won’t be the last.