A little bite to eat

It has been 5 weeks since Sutton has had anything to eat or drink by mouth. After a quiet weekend where Sutton was on his best behavior and not making anyone nervous, ENT agreed to let us work with speech therapy to begin learning how to swallow again. The first attempt was a bit futile, with a lot of coughing (but also good clearing of secretions) and very little interest from Sutton. I think it probably didn't help that he wasn't being offered the typical things that he would normally eat. However, he did have a lot of interest in his sippy with (thickened) water. The downfall was that he doesn't realize he can't guzzle it yet. So, working with him on patience will be part of this relearning process, too. 

I got a smoothie at lunch and, when I came back into the room, Sutton was watching me very intently. I asked our NP if she was opposed to me sharing and she was initially reluctant, but agreed after some thickener was added. We made A LOT more progress. He was definitely more interested in the flavor and how cold it was. Speech also came back and offered him some whole milk (this was a milestone, it was his first time getting milk) with thickener in a bottle and he did pretty well with that.

I was more encouraged after the smoothie and milk that this will just be a learning process and that I won't have to try to bribe him into eating. That is something we have to do with Cohen ;) Part of his disinterest could be that he is currently getting fed through his J tube, which means the feeds are continuous and he doesn't really feel hungry. Once we transition back to G tube feeds he should show more interest in eating by mouth. 

All in all, today has been very encouraging. It's moments like these that you endure all the difficult days and weeks for. Also, transfer orders have been put in to move us to the floor and from there guess where we go?? HOME! Social work will need to make arrangements for home health and such, but that is what we are waiting on now. The IV meds are no longer a concern as they were able to switch to oral (through his tube) for everything and his last 3 peripheral blood cultures have shown no growth. 

We pray that this is it, we are finally on our way out the door!