The swallow study and upper GI yesterday were very informative. A video x-ray documented him drinking and eating, and we were able to see (as it was happening) that Asher does indeed regularly aspirate when he drinks thin liquids. When they had him lay down for the upper GI (which is another video imaging process), we observed two very large reflux episodes in less than 4 minutes.
The doctor who did all the testing explained to us the physiology of what we had seen, and then shared her suspicion. She believes that Asher has severe silent reflux (meaning he has reflux that works it's way up his esophagus, but doesn't get 'spit up', instead it goes up then goes back down, and that it has probably been going on his whole life. Because it went untreated for so long, it eventually damaged the tissue in his throat to the point that the mechanisms that protect the airway no longer function (on the imaging he aspirated right away, as the liquid was going down his throat, because the flap that protects the trachea never closed). This likely started really taking root in October when we noticed his constant cough and wheeze, as he was probably aspirating every time he drank. The doctor wants to have Asher scoped (send a camera down his throat) to visualize the extent of the damage, and to make sure that there isn't an additional structural problem. He started on acid reflux medication yesterday, and we will also be keeping our appointment with pulmonology next week to make sure he hasn't damaged his lungs from chronic aspiration.
Reflux (even silent) is a disorder that should be caught early on by pediatricians- we have heard that message now from the ENT, ER doctors, attending physician during Asher's hospitalization, and the doctor we saw yesterday. There is no reason that this should have gone on as long as it did, and a lot of the damage and Asher's suffering could have been avoided if our pediatrician had been more competent. It is possible that Ash will have some long-term effects from this. We don't know how bad the tissue damage is, but it is possible that it could affect his coordination with eating and drinking. Some kids with untreated reflux also develop aversions to feeding because they associate eating with pain. The list goes on... needless to say Ben and I are not very happy.
The first call I made when we left the fluoroscopy suite yesterday was to After Hours Pediatrics, Asher's old pediatrician's office. I left a message with the receptionist asking to have the medical director call me back regarding a complaint, and told her it was in their best interest to return my call by the end of the day. I received a call back almost immediately from an HR person who wanted to document the details of the complaint. After hearing the story, she assured me someone would call me back soon, and said it was a serious complaint that would require investigation. Around 5:00 last night, Asher's old pediatrician (who also happens to be one of the medical directors) called me. She apologized for what had happened, and explained that there had been a communication breakdown on their end. That since December, she had not received any notification from the nurses or other providers about Asher's declining condition. She said that any time a nurse took a call, or another doctor saw him, they should have consulted her... but they didn't. Her exact words were, "I'm so sorry, we should have done better." I appreciated her call, but the truth is mistakes were made over and over again, and the person who paid for them was our son.
Ben and I haven't decided what the next step is for us, but it definitely does not end with a single apology from a single provider. Right now though, our focus is on getting Asher started on the right treatment and having him feel better.
After his appointment I took him to Panera where he devoured a cupcake, broccoli cheese soup, and yogurt. At least he can eat solids again!!
Harlan snoozing on me as I write this...
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