Issue 54: Ways to Survive ASD Parenting and Stay Thankful
Issue 58: Winning Ways to Share the Love with All of Your Children
Issue 81: When Special Education Fails to Be Special
It is the end of day 3 here at St. Joseph's...take 2. After a grueling cleaning out process, Jerry underwent his colonoscopy and endoscopy today. The results? Nothing worth writing home about as the saying goes. Besides some mild gastritis in his stomach, his scopes were not very revealing. The doctor did say that there are some things that simply cannot be seen without a microscope and so he did multiple biopsies from Jerry's esophagus, stomach, and colon. Those results should be in Friday.
So now what? Tomorrow morning Jerry will have another small bowel follow-through, his third since July. This will show if the SMAS has returned as a result of his loss of appetite and even greater loss of weight. His weight is less now than it was when he was released from the hospital back in July.
If the SMAS has returned or is even on the immediate radar, they will re-insert his NJ tube into his small intestine so that we can begin supplementing him with nutrients from special formula in an attempt to bulk him up again. Not that bulk has been any sort of descriptor for him at all over the last 10 months since this battle first began. The most he has weighed since last April is about 75 pounds. Now he is 65.
For as much as Jerry hates the feeding tube, I am giving myself the perseverance and patience pep talk having him home with one will require for us as well. It's an IV-pole-toting, formula-smelling-and-mixing, tube-leaking, booger-encrusted, sticky-face-tape-wearing, kinked-tubing, error-beeping, up-in-the-middle-of-the-night, pole-dragging-up-and-down-the-stairs, endless-supplies-ordering, line-flushing existence that takes time to see as routine. Nor do I want it to become such.
If the SMAS is not present or an impending danger, he will be evaluated for a G-tube instead. And no, it is nothing like a G-string. A G-tube is surgically inserted into his stomach and considered a more long-term feeding support system. It's also a more discreet, less embarrassing option for an active teenage boy in school.
Of course the great mystery has yet to be answered. What made Jerry stop eating, caused his subsequent weight loss and eventual SMAS, and resulted in this crazy roller coaster ride for us all in the first place? That is the million dollar question folks. And no one really knows. But one thing we are certain of at this point. If Jerry's biopsies taken today come back normal, the only other possibility is that this is behavioral.
In other words, somewhere, somehow, and at some point, Jerry associated food and eating food with a negative reaction or experience that he cannot forget. Maybe something he ate made him sick once. Maybe it had nothing to do with something he ate at all, but he developed the flu or caught a virus after eating once and so now he associates eating with getting sick and so naturally doesn't want to do it. We've all had similar experiences where the thought of a certain food or even simply smelling it conjures up some foul memory and we just can't bring ourselves to eat it again, even if it was once a favorite food. It may not be rational, but it doesn't matter. Maybe it's an autism-related sensory issue with an out-of-whack sniffer or touchy taste buds. Lord knows we have seen heightened sensory intolerances since he stopped all of his medications. Maybe it's anxiety or fear. At this point, we just don't know. And we may never know. It really doesn't matter. All that matters is getting him to eat again before his tiny self becomes so malnourished that organ damage results.
Physical versus behavioral. If there is one thing I am absolutely without a doubt certain of, it is that behavioral in Jerry will be so much more difficult to reverse and resolve than physical would be. Behaviorally speaking, we are always three steps forward and two steps back in progress-making.
I have to be honest. While I was listening to the specialist tell us that Jerry's scopes appeared to be normal overall, I couldn't help but become discouraged and disappointed. Please hear me out and don't misunderstand me. I do not want anything serious to be physically wrong with my son. But I was hoping for a logical, non life-threatening, swiftly and easily remedied solution to why I have a 65-pound teenage son. Of course, now that I re-read what I just wrote, I see the word logical. And therein lies the problem. Nothing about parenting Jeremiah has ever fallen into the realm of logical! Lol! Why should this be any different?!
Still, we have no definitive answers until the "fat lady sings" on Friday, as these scopes he had today exhaust the battery of GI tests that could reveal what's going on in his little body. And so I am going to refuse to cross that bridge until I come to it, even if it is only two days away! Gonna walk slowly people!
And so that ends day 3. Overall, it was a day that started with the beginning of a much-needed new ladies' Bible study semester, non hospital coffee (It's the little things.), a friend sitting with us while Jerry was in his procedures, a visit from Pastor Mike, another friend getting Micky out of the house for a fun afternoon, that same friend ordering us dinner, getting to go home for a few hours and eat with the other kids, Ben looking and feeling slightly better from his flu bout, Jonathan taking care of replacing two old car tires after we got a flat on the way home from the hospital, John's job and boss being flexible enough for him to work from anywhere with WiFi, a daughter who kept the house running and clean while I was here all day, one of her brothers was sick, and the other one was at work, Jerry's behavior therapist coming to visit with goodies in tow, family coming to visit with Apple pies from Checker's, friends and family from all over texting, FB posting, and calling with well wishes, prayers, support, encouragement, and offers of help, uneventful and uncomplicated anesthesia and procedures, and complete and total strangers dropping off age-appropriate fun boxes of games and activities for each of the kids in the children's hospital. Blessings. More blessings than worries, worries I have absolutely no control over anyway. It's all about perspective I guess.
I am a Christian. I am a wife. I am a mom. I am an author. In that order.