Addison's pulmonologist has done many tests tot try to figure out what is causing his "recurrent croup". We've done an Upper GI, a sleep study, allergy testing... and yesterday we went all the way to Eggleston to have a PH Probe inserted. I took both of the boys on the long trek to the Disneyland of hospitals. The nurse showed us the long skinny tube that would be inserted in Addison's nose, reaching all the way down to his Esophageal Sphincter (at the bottom of the espohagus, top of the stomach). On the end, there was a tiny little chip of some sort that transmitted the PH info through the wire to a little computer that was in a backpack. I had told Addison that we were going, and what we were doing. I told him that it wouldn't hurt, and he was honestly just happy it wasn't a shot!
When the nurse came in to insert it, Addison and Asa were watching "Wonder Pets" on TV. We laid Addison back, and one nurse held her arms across his legs. The other nurse put these stiff sleeves on his arms so that he couldn't reach his face, lifted his arms above his head, and asked me to hold his arms up. He didn't care what we were doing- he was watching Wonder Pets save the Caterpillar. The nurse began inserting the tube through his nose, and he never cried. When they needed him to swallow, they asked me to blow on his face... but I don't think he ever really swallowed at all. He didn't gag, he didn't cry, he didn't kick or move his arms. A tear came out and after it was over he said that he couldn't open his eyes for a few seconds, which upset him... he said that he wanted to watch the show and couldn't. The nurses were amazed. What a good boy!
We explained how important it was not to pull it out, and he understood. I was given all the info.... Addison could eat lunch when we left the hospital, and then couldn't have anything else again until 3 hours after the END of the meal. Three hours later, he could only have undiluted apple juice. Nothing else. No snack, or water, or anything. Three hours after the end of the apple juice, he could eat another meal. That is the routine- meal, three hours, apple juice, three hours, meal, etc. I have to write down the times, according to the monitor that he wears on his back. I also have to write down the times that he is laying down. Got it. We left for our 24 hour science experiment.
Addison did great with the tube. He carried his backpack, he didn't try to pull it out, he just touched it ever once in a while. By bedtime, I was ready for it to be over with. The fact that he couldn't snack was upsetting to him, and the fact that if it was pulled out we would have to start all over again was stressing me out! He went to bed, and all was well.
The next morning, we woke up with Addison in our bed. He had been awake for about 30 minutes prior to us, which is typical. He usually lays in bed for a while before getting up. I looked over and the tube was barely stuck in his nose, creating a huge loop between his nose and the tape on his cheek. He had pulled it out. My first thought... another trip, no, two more trips to Eggleston... an hour away. More anal retention with scheduling... No. No. NO!
He apologized. He was very sorry... he knew he shouldn't have, but he wanted to "see what was at the end". He told us that he pulled it out while laying beside us... no gagging, no noise. The little booger pulled the tube out, looked at the end, and then tried to put it back in his nostril to hide the evidence. I figured this because a) the thing was barely stuck in his nose, and b) he described the end before we showed it to him!
I took him and the monitor back up the the hospital. Since our 24 hours would have been up at 11:00 and he pulled it out at 7:00, we didn't miss the 24 hours by much. We may not have to repeat it... I certainly hope not. We should know the results in about a week or so... or on hospital/doctor time about 2 months.
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