Thursday, May 22

Test results

Jackie’s night was not near as peaceful as in the past.  The pulse ox study required the hard plastic probe be placed on a finger or toe all night.  We chose the toe since putting the probe on a finger was risky as it could reach his head. I asked why we could not use the adhesive probes which are much smaller and comfortable for the patient – there were none available.  As we had predicted, the probe continued to fall off and alarmed fairly often throughout the night.  The positive is that he passed the overnight test, proving his oxygenation level stayed at acceptable levels with the trach closed. PTL. The trach will still need to stay in for the next couple of days.

Before Jackie got out of bed, the skin and wound care team stopped by.  They examined Jackie and made recommendations for areas of concern, which were not many.  They also work with the therapy teams and based on their observations, make suggestions for the type of wheelchair cushions to use as well as an estimate of the amount and timing of wheelchair weight shift changes.

Jackie then ate a big breakfast and then it was time for his third swallow test,  Becca picked us up and we headed down to the testing room. Jackie sampled many different foods, the X-Ray confirmed the food was being swallowed correctly,  He passed all the tests!  This means he is moving from a purée diet to a ground diet and in a couple of days may be moved to an almost non-restricted diet. From a liquid perspective, Jackie has been cleared to drink anything.  We just have to take things slow which is easy for us, not for Jackie. We finished up the session in Jackie’s room where Becca treated him with small bites of soft pretzel and even some sips of Mountain Dew.

Physical Therapy was next.  Erin came and picked Jackie up in the room.  We headed to the gym.  First item on the agenda – a new seat cushion for the wheelchair,  All Jackie wanted to do was pull off his helmet,  Erin did a great job of explaining how many minutes of the session would require Jackie to wear his helmet and how many did not.  They knocked out the exercises needing the helmet first and then moved to mat/table exercises.  Jackie did have to put his helmet back on at the end because the last exercise was standing.  Each time, Jackie is using more of his strength to stand up.

When we got back to the room, Becca brought Jackie a turkey and cheese sandwich as well as an egg salad sandwich,  He ate both of them and then proceeded to eat the majority of his last puréed lunch.

At 1:30 the Recreational therapist stopped by to talk with us.  She asked Jackie questions about what he liked to do for fun; of course basketball and X-box were at the top of the list.  She reviewed many options for Jackie’s participation and will work with our regular therapists to either combine or work in extra sessions for recreational therapy.  We can also start on the weekends first until Jackie becomes stronger.  Part of this program includes art and horticultural therapy sessions.  We are so excited about all of the therapy options that are available to Jackie and will plan to participate in as many as we can.

Before we knew it we were heading to the gym for OT.  Paula took us to the quiet room and worked on stretching tight muscles.  Since Jackie has been bedridden for so long, there are many muscle groups that are extremely tight.  Loosening these up are key to later success when it comes to unassisted sitting up and eventually walking. She also worked on posture and head strength.  She did a brief eye exam and has planned for Jackie to see eye docs tomorrow.

At this point, Jackie was exhausted.  Paula came back to the room with us and helped us get him in bed.  We were hoping he would take a nap before dinner.  The nap lasted about 5 minutes.  All Jackie was thinking and talking about was food.  We finally got him up and he ate his first ground meal; cut up meatballs and spaghetti.  He loved it!!

After sitting in his chair for 30 minutes after dinner, we moved him back in bed.  He continued to be restless until about 1am.  I’m hoping the rest of the night will be peaceful.

Thank you for your continued positive thoughts, prayers and support.