Tuesday, June 18, 2013


James has been pushing himself to the point of complete exhaustion. He has been falling asleep earlier in the evening, and often, the afternoon, and sleeping in to late in the morning (and almost afternoon). Yesterday, James was only awake for four hours (and could barely keep his eyes open). We were not able to do a spontaneous breathing trial, because of James' exhaustion. There has been a trend of progressive fatigue throughout the ventilation weaning process. It takes an enormous amount of energy for him to breathe independent of the machine.

The team has made a decision to slow down the aggressive weaning process. James will return to pressure control settings overnight. The machine will breathe for him in his sleep. This will allow him to conserve energy in his sleep, and achieve some well-earned and well-deserved sleep. James will be able to build strength and endurance through participation in physiotherapy. As always, it is all about balance. We continue to move forward, but at a different pace. It is essential to listen to your body.

James has been meeting all of his goals for moving forward. It is all very promising and hopeful. It is with absolute joy that I share James' accomplishments. James is no longer on TPN. This was a major leap of faith for James. He is getting all of his nutritional needs met through nasogastric feeds (despite a long standing history of nausea and vomiting episodes in association with feeds). This eliminates the risk of sepsis from TPN. It also starts the process of redeveloping the function of his digestive system. (James has not had anything by mouth in almost six months). James is also weaning down on his narcotics (with slow and careful pain management). This will help improve the function of his digestive system, and allow for weaning from his extensive bowel routine.

James' participation in physiotherapy is also impressive. He walks the entire unit every morning, and in the afternoon, James independently takes on exercise. He stands every hour to stretch and do exercises from the treadmill room routine. He is able to stand without support and remain standing for several minutes. He also does arm weights and leg weights. He is even considering the pedal bicycle for the afternoons. That is motivation and determination at its best. He is doing his best, and I am so proud of him.

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