Will's Health

In a typical day we forget how Will has tracheoesophageal fistula. He acts just like a normal boy. Only in times when he is sick or eats too fast do you see signs of his TEF and severe tracheomalacia. Since we are moving we thought it would be good to have follow ups done with Peds GI, Peds ENT, and Peds Pulmonology. This way we have a baseline for his health when we establish care in Aberdeen.  Will and I went to the Peds ENT office to have a Fees Test done which they take a small, flexible probe with a light at the end and go down his nose to look at his swallowing. While it was in place they had him drink and eat to see how he swallows. He was a champ and followed the doctors orders when told. And his swallowing looks fine.

Yesterday we left for the hospital at 11 and he was taken back to the OR at 2:15. He was such a good boy only asking twice for juice or Cheerios. While he was under the Peds Pulmonologiest did a bronchoscopy, Peds ENT looked over his airway and vocal cords, and Peds GI did an endoscopy and a Ph probe. The Ph probe is a small, flexible tube with a receiver at the end. It is taped in his nose, goes down the back of his throat and sits above his stomach. It is then attached with a small recorder that he wears around his shoulder. This device records if any acid reflux is coming back up his esophagus and how often. Children born with TEF typically have severe acid reflux. Will has never shown any signs of reflux but it can be happening without us noticing. Will had to wear it for 24 hrs. Or that is what was suppose to happen. The GI doctor told us to be prepared for a brutal 24 hrs as it feels like something is in your nose and down your throat. Not too comfortable. Will woke up from general anesthesia in not a great mood. He screamed in the PACU for it to be taken out for almost an hour. Once we got him settled down we were able to go home and monitor it over the course of the night and next day. He ate and drank pretty good for having it in. There were plenty of cries last night but for the most part he left it alone. Then came bedtime. He had a long, tiring day but he couldn't fall asleep with it. He said it tickled when he laid down. By 1 am Will and us had no sleep. We tried everything to get him comfortable. Somewhere around the 1 am mark the probe came out. The nurse told us if it happened in his sleep it would be ok but encouraged it to stay in place for 24 hrs. Instead of worrying, we were thankful that we all finally got sleep. A huge thank you to Grandma D for coming to stay with us and take care of Evie while we tended to Will.

During his procedures all docs said everything looked good. No concerns. Now we wait for this Ph probe to get reviewed and also some biopsies from his lungs and esophagus.

We are just so thankful he is a healthy boy! We are always humbled when we are waiting in the OR waiting rooms and over hear stories of other children having surgery that day.

Right before going back to the OR. Daddy got to go back with Will.
Will did a great job going off to sleep