Gut reflections, 4 years into g-tube life.
Orson has had his g-tube for four years now. It is still strange, incredibly cool, and can be emotionally draining for him all at once. He loves having a trap door for liquid meds. He loves watching youtube (studio C, and kid snipets) videos while his morning bolus feed is accomplished. He typically does not like talking about his g-tube with people. Sometimes however he will randomly offer up the information depending on the social environment. He hates that it is always there. He hates the scared feeling he gets when someone on the playground accidentally kicks/bumps him in the stomach or it gets snagged on something unexpectedly. He has adapted exceptionally well to having a piece of plastic hooked into him every second of the day for the past 4 years. He still plays rough with siblings and dad, swims, does full participation in PE at school, and runs around like a maniac on the playground at recess. He has one skip night a week so if you add up the skip nights (52 and round up to include when his stomach is too upset to hook up at nights, or he skips for other reasons to 65 total skip nights a year) and get him doing his button 300 days a year every night for 4 years, he has run 1,200 nights of 6 hour continuous feeds. Approximate total hours tethered to his formula pump for the past 4 years is 7,200. That also means Frank or I have gotten up to unhook our buddy and get him to the bathroom 1,200 times.
It has blessedly never had to have been surgically placed again since its original placement in 2015. We have become experts in removing the old button and replacing it quickly for him. We have learned the best kind of tape to use and how to prevent it from tugging on him while he sleeps like a wild wiggly child each night. His teachers or myself have taken a “foley” and/or tape with us on each field trip he has ever gone on, or anytime we leave the house at all for just in case emergencies of it coming out and needing to save the sight from closing up.
He continues to not have the desire to eat much orally. I continue to wonder if I’m doing the right thing using the canned formula or if I should use a fancy blender and do custom formulations for him like other g-tube moms I know who do that very successfully. I tried it for a while back in December of 2017 when he had tonsil/adenoid/sinus/bronch done on the same day and afterwards couldn’t eat orally for 9 days. It was really neat to do the blends but for several reasons we went back to the canned formula.
He periodically asks when he can get rid of the g-tube. We explain that it would be a slow process over a year or more where he would taper the use of it while continuing to maintain or gain weight and then finally end use of it and then the decision could be made at that point to remove it or not.
I went back and read the post I wrote after his surgery and it really was a terrible time. We had no idea how awful the entire anesthesia experience would be for him. Four years and a handful of other anesthesia’s later we see that its just extremely taxing on him mentally and physically every time he goes under. Torturous on the kid. It was also our first experience in a negative hospital environment. Insurance had us use a different facility than we were used to and it was not great. A huge miscommunication between the surgeon and the hospitalists happened and no one wanted to contact the surgeon to clarify so Orson ended up fasting unnecessarily for 39 hours. My hindsight and gained experience over the past 4 years of life with hospitalized chronically ill children has me seeing the situation he was in with anger. I would do it so differently with my now knowledge. I’m sick to my stomach now thinking about how we let him suffer because we were afraid to defy the “hospital” when we knew better from the surgeon. But then I try to remember that anger solves nothing and that we have learned a truckload since then and most importantly I remember the sweet sweet King Of Brave who fed his bear when he could not eat himself. What a sweet daddy he will be.
The g-tube has been a mighty lesson for Orson in strength, endurance, compassion, and courage. We’ve definitely learned about all those things from watching him.
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| King Of Brave 2019 |
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| 2019 April vs. 2015 April family photo |
