My son is such a great kid. He’s not aggressive like most boys his age (he’s 5). He is super affectionate and we could all learn from his determination.
Tuesday Roger had to have an endoscopy and 24 hour esophageal nasal tube test. I tried prepping him the night before on what to expect and showed him pictures of the nasal tube. We also kept repeating the food and drink cut off times. He nodded. He was completely disinterested.
The next morning he (we) woke nice and early. He asked for his morning snacks and water. We told him no to food and that he had 30 minutes left to drink water. We set a timer. He does well with countdowns.
The drive to the hospital was a bit lengthy due to traffic and the maps getting confused and rerouting. My husband dropped us off out front. Roger was hoping for a play area but there was none. Things moved very quickly and we were at the desk going over a ton of forms needing signatures. Roger looked at me and said, “I’m sad”. Up until that point, he was completely non-chalant. I told him mommy and daddy were going back with him.
Roger did well getting his cape on and getting his vitals taken. Usually his can never be read due to his non-stop movement. As things tend to go, our wait before getting his “silly” juice/sleepy medicine was nearly 2 hours. Roger was a trooper playing on his iPad and watching Home on their tv. The girl across from our “room” continually screamed “I’m scared!” If I were in Roger’s shoes that would’ve made me a wreck. He seemed not at all bothered (thank you, autism). Finally, he received his “juice” and started quieting down and got sleepy. They wheeled him back to the OR about 30 minutes later and he did not get upset at all (inside I was a mess).
The procedures did not take long, all went well, and we were allowed to go to the recovery room. Roger’s eyes were full of tears. He kept repeating that he wanted the tube removed. It was a circular cycle of him asking, him being denied, and him spiraling into a series of coughing that even worried the nurses. During this time, the tube also had to be moved down his esophagus further. It was all so heart-wrenching. He also needed arm casts to prevent him from touching the tube. We tried to have them off a few times but he immediately would grab at the tube.
The tube, the arm restraints, and the awful food schedule of him only being able to eat/drink every 4 hours with nothing in between was what we left the hospital with. We had a few bad moments during the day but he was so unbelievably good. I would not have been that calm and easy-going.
My son is one remarkable little boy.
4 thoughts on “A remarkable little boy”
Indeed! How’s he doing now? And what’s this all about? His reflux? Is he still struggling a lot with eating?
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He’s fine. Like it never happened. Although he does like boasting that he had an endoscopy! It’s for reflux and to see if he has food allergies. His eating is terrible. Hope we get some answers soon.
Sorry he had to go through that. Hope they found the problem and its an easy fix. Please give him some hugs and kisses from his Aunt Nancy!
I relate. It’s a way of life. Ever think of all the wasted mental space it occupies? Another thing to worry about… 🙂 Sent from my iPhone