24 Oct Update
The plan changed yesterday after we posted. Keegan’s weight was down to 15.3 pounds, and he had been 24 hours without a bowel movement by 4pm yesterday. So with the picc line out of place, Dr. Brown advised to go ahead with starting an elemental, amino acid-based formula called Neocate in Keegan’s ng tube. He wanted to start at 5ml per hour (remember there are 30ml in 1 ounce) and increase by 5ml every 4 hours until we reach 50ml. If all goes smoothly, we should reach the 50 mark late tomorrow evening. If he is tolerating the 50ml, then we should be able to go home with the ng tube and feeding pump and begin feeding therapy on an outpatient basis. So far, we’re up to 25ml/hour and doing pretty well. He’s only had one dirty diaper. It was not great, but not enough to stop the feeds. Keegan was a bit uncomfortable overnight, but we think it was just getting used to having something in his stomach again. He is in a much better mood today, and he’s been playing and standing for longer periods of time. It’s nice to see he hasn’t lost his smile and laugh through all this. His weight is up just a touch today, which is also encouraging.
Thank you as always for keeping Keegan in your prayers. We are so blessed to be surrounded by such loving and caring friends and family. I’m trying to post a few pictures, but we’re having a bit of difficulty with that right now. Keep checking though because we’ll keep trying! Thanks again.