Exhausted and in bed by 6:00 PM
Wow, I don’t think we have ever had a day at Magee that went by as quickly as today. Sam and I got there a little late this morning due to the lovely Philadelphia traffic, so we only caught the last half of his first PT session. Lucky for us, though, we did get to observe his driving skills yet again, as he terrorized the employees and patients of Magee, in the power wheelchair. All kidding aside, there was much improvement since his last driving experience. There were no circles today. Honestly, I was a little disappointed, I really get a kick out of hearing his devilish laugh when he does it! After PT, we went to view a video and get information on portable showers and wheelchairs used specifically in showers. Amazing how far technology has come and even more amazing is the cost of that technology! After that we went back to his room and he did the trach collar for about 20 minutes unti lunch came. He was just beginning to eat when he had to move to a conference room where we (Aaron, Sam and I) met with Aaron’s doctor and some other key players in Aaron’s rehab. We conferenced in Aaron’s dad and step-mom, as well as Jaime, over the phone. When that was over, we went back to Aaron’s room and again he started to eat his lunch, and a doctor came in the room to talk to him. Two minutes later, while the doctor was still there, a Physical Therapist showed up to take him to PT. Rather than fight over Aaron, the PT time was changed, the doctor stayed, Sam and I left to eat lunch and poor Aaron STILL didn’t have his lunch. Finally, at 3:00, the doctor left, the Physical Therapist came back to his room to get him and I INSISTED the poor guy eat his lunch before he does one more thing!!! So, he quickly gulped down a somewhat cool Sloppy Joe and then he was off to PT. He got to play pinball for the second time today. He activates the flippers with controls placed behind his shoulders. He really does well and enjoys that.
After we returned to his room, he decided he wanted to do the trach collar again. He was hooked up, ready to go, but he just didn’t feel well doing it. He was able to last 20 minutes, but it didn’t go nearly as well as it had the day before. He asked to stop, which was fine, not a problem. After the trach collar is removed, Aaron often gets more secretions than normal and his trach has to be suctioned, not a big deal. Today, however, there was some secretion that the Respiratory Therapist couldn’t get to move up or down with normal suctioning. He used a “bag” on Aaron, which forced air down Aaron’s trach. Eventually, the secretions moved and Aaron felt much better. This kind of activity, though, really wears him out. He asked to be put into bed and that’s exactly what happened. So when we left Magee today at 6:00, Aaron was being put into his bed, extremely worn out.
Forgive me for all the details. I just want you to understand what a typical day is like for Aaron and for you to understand how days like this can really wear him out.
Tomorrow’s another day, Aaron. We’ll continue to work on gaining time on that trach collar!