Day 20

Yesterday was the G-tube trial and it was miserable. I was secretly hoping Noah would shock us all and tolerate stomach feeds, but I wasn't expecting it to go well. It was even worse than I had imagined, and he was absolutely in agony with retching, crying and choking on secretions. We had to stop after a couple of hours as his lungs started sounding crappy and the risk of aspiration was too high. Radiology put his GJ tube back in and we are back to where we began. At least we now have an answer as to what he can tolerate and we can cross that one off our list.

As far as where we go from here, I'm not exactly sure yet. We may be looking at another surgery, but that is still up for discussion. Noah still needs another few days of IV antibiotics and another week or so of the antifungal by IV, so no plans for home yet. He is also still having issues with the feeds. We are slowly going up on the Neocate, but the loose, watery stools are still happening, and as long as he has that, he requires the extra IV fluids and potassium to keep his lytes stable. He is looking good though, and was even able to go to playroom this morning for the first time this admission.

And so we continue to sit and wait this out, praying that this will all be worth it in the end and we will be able to go home with no central line, hopefully reducing our hospital admissions. So, although this admission seems incredibly long and never ending, I have to focus on the bigger picture here and pray that we are doing the best thing for Noah.