Waiting at the ENT
The Nissen Fundoplication: everyone is in agreement that the surgery has been a success. "Success" does not mean that the reflux is entirely gone, but that the symptoms are mostly controlled. He has only had one ear infection and one sinus infection in four months - for Nolan, this is a major win.
The G-Tube: due to continuing stridor and the use of C-Pap, the g-tube will remain in place for as long as Nolan has the need for mechanical ventilation at night.
The stridor: I showed our ENT a video of Nolan's stridor and she agreed that it is most likely due to the laryngomalacia. He's been through a lot lately, but she wants to do another scope in the fall or winter. She would like to try to cure the stridor surgically, but we aren't so sure about that route since past attempts have failed.
Diarrhea: We aren't sure if the diarrhea is due to the fundoplication, the medication, or something else (read: intestinal issues or enteropathy). It comes and goes, and isn't as severe as it was a month or so ago. His ENT agreed to a trial wean from the Nexium (he must stay on the Zantac). This is rather convenient, as he has been off Nexium for about a week due to yet another insurance denial. If the diarrhea ceases, we'll know that is the cause. Since he's been off the Nexium for about a week, I doubt it is the medication (he had an episode last night). I also doubt it is due to the fundoplication, since it was present even before the surgery. We'll take it as it comes.
Weight: Despite some stellar days with eating, Nolan's weight hovers at 33 pounds. He's between the 5-10% for weight. The non-stellar days with eating keep him from gaining well. This is another watch-and-wait thing. He's still on the charts - little, but still on the charts. Yet another reason for the g-tube to stay put - if we remove it, we could very well be having one put in again in a few months as he falls off the charts (unless he starts to gain).
Falling episodes: It is hard to do formal vestibular testing on a young child, but the consensus is that Nolan's falls are vestibular in nature. There isn't much to do about this particular situation, since the attacks are random in nature.
Gross motor skills: Nolan is on "alert" with gross and fine motor skills through the school, since he has some muscle weakness. He can run just fine, but his throwing skills, jumping, and balance are not age-appropriate (as measured by the DIAL preschool scale). Not really the ENT's domain, but we discussed it. He'll probably end up with physical therapy or occupational therapy sometime during kindergarten. Another thing we'll take as it comes.
Fatigue: we aren't sure if this is due to stomach pain/dysfunction or if he has true fatigue. Watching and waiting on this one.
Progressive hearing loss: I brought up Nolan's new hearing level. This is one time I wish he did have fluid or a sinus infection to explain the additional loss. Sadly, this is simply a drop in his sensorineural hearing level. There is nothing to do for it but watch, wait, and increase amplification. I asked our ENT if most kids with progressive losses just level off at some point. She smiled and shook her head sadly, but then said, "Well, sometimes. We have no way to tell what is going to happen." Considering that Nolan started life with a normal hearing level and present OAE's in the high frequencies and now has a 70dB loss in that ear, things aren't looking promising. It could take a long time for his other ear to drop or for either ear to progress beyond the help of hearing aids, but we are probably going to see his hearing slowly slip away.
We'll return to the ENT on October 15 for another routine appointment. An endoscopy will probably be ordered to look at his esophagus and larynx at that time. We'll also be able to discuss his hearing loss, since I should have the audiograms from the July 6 test and the October 8 test by that time.
