Monday, May 12

Anticipation

This looks like it may be the week we finally get to Magee.  PTL!  Our docs have given the approval to start working on the re-admission process.  Updated notes and reports need to be given to the Magee staff on Jackie’s PT,OT, ST and medical status as well as many other things that the hospital and case workers handle for us.  We just wait with anticipation for the green light to start another leg of Jackie’s journey to recovery.

Jackie had a good day.  He continues to enjoy eating ‘real’ food and is able to consume a little more each time.  So far, pureed bananas, chocolate pudding and thickened chocolate ice cream remain his favorites. Jim and I definitely work together as a team during meal time.  There are many things we have to watch and ensure happen with each bite of food.  We also have to make sure Jackie stays focused during  the entire meal.  As much as we would like to have fun, laughing could be detrimental to a proper swallow.

The dietitians have reviewed and set a new daily caloric intake for Jackie.  They now look at the calories he consumes during his meals and then adds that to the nutrition he is getting through his tube feeds.  Together they should match the number they are looking for.  Like in the past, it is not a perfect science.  Jackie continues to hit high residuals and we must turn off the tube feeds until his body is able to catch up with the absorption of what he has already consumed.

The OT/PT team worked with him today.  Even though his neck and head are still sore from the shunt surgery, he gave it his best shot.  They sat him on the side of the bed and worked on torso and neck strength.   He was then hoisted into the wheel chair and we decided to take him out for a quick taste of fresh air.  We wheeled him outside the entrance and even though the change of scenery and warm air were all positive, the noises of the city were too overwhelming.  We came back inside, took a quick trip to the walk bridge and then headed back in bed.

The rest of the day was low key for the most part.  Now that the lumbar drain is out, we are hoping to have his PT/OT session in the hospital gym tomorrow. Even though the sessions are hard work, his helmet seems to be what bothers him the most.  I’m looking forward to getting a more comfortable fitting helmet at Magee.  Jackie will need to have it on at all times when he is out of bed.

How ironic that Magee is located on Race St.  We are hoping that Jackie’s rehab there will mark the back half of his marathon.  Jackie has fought and made it through many tough miles and I’m sure there will be more hurdles he will have to face.  With continued love and support Jackie can make it to the finish line and I know we will all be cheering for him when he gets there.

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