Jackie woke from a somewhat restless night. Since we have been back at Magee we have been trying to max out Jackie’s nutritional needs through his feeding tube overnight. Once again we were not successful. Jackie had stomach cramps and the feeds had to be turned off. We were able to turn them back on very early in the morning but for only a short time. Hoping to have a better night tonight, as nutritional needs are a huge part of his recovery. Jackie is starting to eat a little on his own but at this point it is considered pleasure eating and does not have a significant impact on his total calories for the day. Like before when he was on the feeding tube, the goal is to continually increase what he is eating by mouth and ultimately decrease the tube feeds to nothing.
Jackie went to Becca’s office for speech. She continues to observe his cognitive vs motor skills during her sessions. Right now it is easier and faster for Jackie to answer questions with his fingers than to respond by voice. It will just take a while for his brain and body to recover and reconnect after this last set of surgeries. Patience. We have never been challenged with the need for so much patience in our lives until now.
Speech ran right into PT. Erin tested Jackie’s endurance for laying on his stomach. Having the feeding tube in adds a complexity to this exercise, but the therapists know how to handle every situation. After the session was over Jackie was given lunch via his tube. It is called a bolus feeding and is given to simulate eating a meal. It also is packed with calories and nutrients. This way Jackie can save his energy and put it toward therapy sessions instead of working so hard to eat as much as possible by mouth.
Paula worked with Jackie earlier than normal. She had him doing many things including standing and working on his posture. Paula had him stand in front of a mirror which makes it easy for him to see what needs to be self corrected. Speaking of vision, Jackie will be reevaluated to see if his vision has changed since his surgeries. We anticipate this happening in the next couple days.
A nap was next on the agenda. Grandma and Grandpa were visiting and sat with Jackie while Jim and I met with our entire Magee team. Dr. K led the meeting which included 10+ Magee staffers. It was the first time in many months that I sat at a large conference table for a meeting. This used to be something I did all the time at work. It felt oddly familiar yet totally different, if that makes any sense. It was time to talk about the new plan for Jackie. New strategies and goals are in place to help Jackie gain more independence. Everyone on the team has a role and agreed on next steps. Weekly updates will keep the team on track. I was moved by the teams level of passion and commitment. It completely reinforced our decision to bring Jackie here. PTL Hopefully Jackie will rise up to the challenge of the new plays that will drive this next phase of his recovery. It’s game day.