Wednesday, August 13 – Thursday, August 14

Back At Magee

We spent the better part of Wednesday working with the Jefferson Hospital staff on the discharge process.  The PT and OT team came to the room to evaluate Jackie.  Their report was the missing piece needed for insurance approval to get back to Magee.  When all was said and done we arrived back at  Magee around 4:30pm.  Becca had sent me a text and then ordered dinner for Jackie so he would have something to eat.  Once agin we had to go through the formality of the admission process.  This is a lot of work for everyone but has to be done.  We finally got completely settled back in with all meds taken by 11pm.  Jackie was exhausted. Thursday would bring the return of a busy therapy schedule so getting as much rest as possible was key and it was already late.

We let Jackie sleep in as long as we could.   We actually fed him breakfast in bed as he tires so easily and his swallowing is still not normal.  We were glad to be back so Becca could help us with regaining his speech and proper tongue movements for swallowing.  Becca decided to keep him on a restricted diet.  It was too risky from a swallowing perspective to allow him to eat regular foods.  He did not speak much but still responds with thumbs up and down.  Our goal now is to get him to eat and drink enough to bridge him to surgery.  If possible, we do not want to have to put another feeding tube in.  That is going to be a day by day decision.

We had noticed a different wheelchair sitting outside Jackie’s door.  Because of his lethargy the therapy team decided to move him back to a chair that can tilt back for weight shifts.  Jackie cannot move this chair on his own, but right now he most likely couldn’t anyway.  Erin was back from a long weekend and got Jackie back up on his feet.  She even got him to take a couple steps again.  PTL

During a challenging lunch we spoke with the head of dietary.  She is helping us track his food and liquid intake and providing as many food alternatives as possible that are soft, high in protein and calories.  We then put Jackie back in bed for a nap with hopes he would have more energy for OT.  Paula came in and helped us in the bathroom.  She could see how tired he was. They went to the gym and ultimately went outside for their session.  Paula felt fresh air and sunshine may help.

Jackie took another nap after OT.  Once again we struggled with dinner but he was able to eat more than he had at lunch.  PTL We tried to engage him by playing with two tennis racquets and a balloon that one of the families we met had given to Jackie.  He played for a short time but was not as successful as he had been before when we played.  We went up to the sixth floor terrace for a very short time and then came back and got Jackie ready for bed. Another IV was put in so Jackie can get fluids over night.  This will help him stay hydrated.

We are looking forward to our appointment with Jackie’s neurosurgeon on Monday.  We should have more details on next steps after talking with him.

It is amazing how balanced and intricate our bodies are, all driven by the brain.  We walk around every day taking this for granted.  Take care of yourself and be kind.  Whether you realize it or not, every day is a gift filled with opportunities and blessings.