July 27, 2015

Steele Hanging Out on Monday Morning

This past week went fairly well. He is doing well without the use of the oxygen tanks, which has made his care much easier than before. The new challenge is getting him increase the daily feeding goals. Currently, he will take about 1/2 of the bottle every 3 hours, the remaining milk & medications are given to him through the NG tube. Rachel and I had a difficult weekend with the feeding schedule. We would get through the initial bottle phase and then switch over to the tube and he began spitting up after nearly each feeding, which dropped his overall intake and weight. We were concerned about his weight loss and holding down medications. OHSU gave us a list of "Red Flags" to watch for, one flag is a weight loss of .3kg in 24 hrs. We kept a close eye on him and tried to slow down the tube intake, and he seems more stable today. It is stressful when you are trying your best to meet hourly nutrition goals and you fail. We are going to change the type of dietary supplement that is added to the milk, nearly all his tube feeds seem to cause stomach issues. We are consulting with the nutrition team at OHSU to find a solution. We really would be happy if he did not have to have the NG tube in for the duration of 6 months. I mentioned in the last post, that if he can reach higher bottle intake goals on a regular basis, the tube will be removed.

This week is free of appointments, finally!

                                             Ryleigh is learning the ropes of child care: