New hurdles

Since our last visit to St. Louis two weeks ago, Sutton has made little progress in his ability to eat and drink by mouth. About a week ago, very frustrated and ready to throw in the towel, I contacted our physician and the speech pathologist. We were battling developmental hurdles like Sutton wanting to do it all himself and not wanting to allow me to help as well as a huge spike in secretions and his need to be suctioned. They gave me some tips and encouragement, but by our visit on Wednesday we had still not had any progress.

The problem isn't as much the lack of progress, as there are bound to be plateaus on this journey, but the backslide he (and I) have had. He is requiring very frequent night time suctioning again and now requires day time suctioning - something he hasn't needed in a few weeks. Maybe it's teething, maybe it's a virus, maybe it's his esophagus needing to be dilated. We don't really know at this point. We had also previously weaned him from all of his medications except the one for his reflux, but now we have added the medication to thicken his secretions back to the repertoire in the hopes that it will help him clear the secretions a little better.

At our ENT/surgery/speech visit this week they scoped Sutton again. They also gave him some puree while they were in so they could visualize his swallowing ability. He wasn't a big fan, though he never is. And Cohen, sweet kid, was very attentive to his brother's needs after they were done. What we saw was that he seemed to be very delayed in his realization there was food at the back of his throat that needed to be swallowed down his esophagus and, therefore, delayed in his response of actually swallowing. This resulted in lots of coughing and extra secretions (pretty standard at our meal times). The good news is that everything seems to be healed up nicely and it appeared that his right vocal cord had some function.

The concern with this delay is that he actually can't feel the food in the back of his throat because the nerves have not yet reestablished their pathways from all of the surgeries. The discouragement here lies in the amount of time it can take for nerves to repair, if they are able to repair themselves. With a new baby in November and Sutton's obvious vigor for learning to eat by mouth again, we were all hopeful that a more normal way of life would be in full swing by the arrival of #3. Now, we're not so sure. Realistically, it could be well into the spring before he gets some sensation back and, for those of you that have had surgery before you can understand, it's also possible it may not return. We are still hopeful this won't be the case, though, as the nerve damage that affected his face (left half responsive, right half unresponsive when upset and his droopy right eye) has improved dramatically.

So, tube feeds for the indefinite future and letting Sutton play and attempt to eat and drink even if he doesn't actually get any nutrition from that route is what we will do for now. We are scheduled for an outpatient OR visit at the end of September for ENT and surgery to look at his esophagus, airway and vocal cords. If they get in there and decide that he needs his esophagus dilated, they will do it while he is under so that he doesn't have more anesthesia than necessary. If they dilate him, he will be admitted overnight for observation.

Please keep him in your prayers for safety and continued progress and us for sanity :)