Discharge orders

Sutton's tests in the OR yesterday showed great healing. His vocal cords and airway are recovering well since the mass has been removed and his esophagus is well healed and functioning properly. They dilated the upper portion of his esophageal repair, but said that the amount they stretched was pretty negligible.

The good news is his esophagus didn't really have any narrow areas. This is a bit frustrating for me, because I had hoped that was the key and we would see great strides in his ability to eat and drink by mouth after this. So, more slow and steady progress. Our ENT referred to him as a "moving target." Since he is 15 months old we are not only trying to train the new portion of his esophagus to work well with his existing esophagus, but we are battling developmental milestones and independence issues as well. The really great part of him not having really constricted scar tissue that needed to be dilated? It could mean that he doesn't spend his entire life fighting a constantly tightening esophagus and may not require dilation throughout his life. It stinks now for Kedric and me, but this is absolutely the best case scenario for him to have minimal lifetime repercussions from this. For those of you that have children you can understand --- I would much rather this be hard on us now than hard for him forever.

Also, his GJ button was traded out yesterday for a G button which is allowing us to have lower maintenance for his button cares and, since it sits much closer to his skin, hopefully less interest as a toy for Sutton :) He has been tolerating all feeds into his stomach for a few weeks now which is big relief and now we can move to only feeding him during the day (instead of around the clock). This is a huge blessing because his secretions are markedly decreased when he doesn't get feeds through the night. This means less suctioning and, for this tired mama and daddy, getting this big guy back into his own room before the new baby joins us!

So, we will head home today and resume our monthly follow up plan with ENT. We will have one more visit before Sutton and Cohen's new brother arrives. Please pray for our patience and Sutton's persistence as we continue to progress through his ability to eat and drink by mouth.