October 12, 2016

I got to hold Louis again today. Dan even sacrificed his turn, so I could hold Louis for twice as long, and he read to us from The Fantastic Mr. Fox. We have been working our way through the Roald Dahl box set (James and the Giant Peach, Fantastic Mr. Fox, Matilda, Charlie and the Chocolate Factory, etc.). We will tackle the Chronicles of Narnia next. We would welcome any book recommendations. 

When Dan and I visit Louis we call it 'going to his office.' There's a nice group here called Child Life, and their job is to make the hospital a little more comfortable for families. So they surprised us today and had this nice sign made for Louis' room. We also began putting up photos of our family in his room. 

Today, Louis had his feeding tube changed. He had a standard tube, which fed the TPN to his stomach, and then they switched to breast milk. His new feeding tube goes further past his stomach and into his small intestine. This eliminates the risk of Louis vomiting or spitting up so no possibility of aspirating again. His feedings also increased. They are weening him off the sedation, and lowering the oxygen saturation in preparation for removing the ventilator (breathing tube). The surgeon wants Louis to be breathing on his own for a few days before surgery. Tentatively, they've rescheduled his surgery for next Monday, October 17th, but that's not firm. We have learned to take progress and planning one day (sometimes half a day) at a time. 

Thanks for all the love.