Some answers.....more questions

We are home and catching up on some rest after a long two days at Childrens. Eli did very well through it all and flirted with all the nurses and doctors like always. The nurse was having trouble placing the probe for his impedance study (like an NG tube) because Eli was fighting her so I stepped in and did it. Thankfully Eli wasn't mad at me at all and said, "Thank you mommy. Can I have a hug?" afterwards. We had a "constant" for the 24 hours of the impedance study to record every time Eli had any symptoms like coughing, burping, retching, gagging, choking, or vomiting. It was amazing how many times Eli coughed during those 24 hours. The doctors were right.....we do tune it out because it is just such a familiar thing at our house that we don't even notice most of the time that Eli is coughing. Eli called his NG probe his "tubie" and didn't mess with it the entire stay. I was quite impressed because most kiddos yank them out any chance they get.



We went down to the sleep lab around 5:30 Wednesday to get Eli wired up for his EEG, ECG, O2, CO, breathing movement, and sat monitoring. Eli could not figure out what was happening but he loved looking in the mirror at all of the new wires his head and body were accumulating. He held on to my compact for half an hour just staring at it all. Al left to go pick up Carson from my parents around 7:00 and Eli and I settled in for bedtime stories. He fell asleep around 7:30. Unfortunately he kept waking himself up every 15 minutes or so for the first 3 hours coughing. He would cough, wake up (sort of), look around, see me in the other bed, see the constant by the computer, look drugged and half asleep, and then pass out again. The little many snored most of the time too. In the morning they woke us up at 5:15 to start getting all of the leads off and ready to go back upstairs to our room. He did great throughout the whole ordeal. We had great constant and nurses but the day took forever!!



By 3pm they were ready to pull his impedance probe and send the results to his GI/motility specialist. His normal GI doc stopped by to chat and play with Eli for a bit in the late afternoon and by 6:30pm his motility doc and her team came in to share their preliminary results. We were out the door and home by 7:30 to see our buddy man Carson.



The results were okay.....

Impedance Study:

1.) No acid reflux, only non-acidic reflux episodes.
2.) After reflux episodes, E's esophagus empties very slowly.
3.) E coughs A LOT and they believe it is associated with his reflux.
4.) The coughing is most likely tied to aspiration.

Recommendation- Continue with the 15mg Prevacid Solutabs. We will be going back for more extensive motility testing of Eli's entire GI system in 2-4 weeks (as soon as scheduling permits). They will focus on his esophageal motility especially with reflux episodes. They believe this slow esophageal motility after refluxing could be contributing to his aspiration and declining respiratory status because the refluxed contents just sit there at the esophageal/tracheal junction. They said another option could be that the upper GI was somehow wrong and his Nissen fundoplication is not unwrapped, but instead too tight. They will investigate this during his testing in the coming weeks. We will see if fundo #2 is happening post-motility testing.

Sleep study:

1.) No apnea, bradycardia, or obstructive breathing.
2.) No spike waves indicating seizure activities on the EEG.
3.) PLM index of 3, meaning he moves his legs rhythmically at night but not often enough to be classified at a sleep disorder or RLS.
4.) Mean oxygen sats of 94% (YEAH for this one!!!! WHHOOHOHOOO)
5.) 10 episodes of coughing that awakened Eli from stage 4 sleep (the deepest sleep).
6.) 15% of the night slept supine.
7.) 50% of the night spent snoring.

Recommendations: Review the impedance study and evaluate the extensive coughing during stage 4 sleep that is intrusive and interrupting. No oxygen needed at night.