The Ride Continues
Did you ever ride a roller coaster and wish you could have stayed on for another ride? I remember days spent at Hersheypark when I felt that way; the excitement and wind in my hair and face was such a thrill and the ride was over way too fast. On the contrary, TBI has Jackie on a roller coaster ride that he would love to stop. It is ironic because he actually doesn’t really enjoy riding coasters to begin with. The constant ups and downs keep coming and just as we think it is time to get off and take a break, another hill surfaces.
Jackie started the day having breakfast with Becca. The trend continued and Jackie struggled with swallowing. Becca was beginning to have to go down the path of coaching each chew and swallow. It was becoming laborious for Jackie and certainly not enjoyable. Since Jackie is getting all of his nutritional needs from his feeding tube, we all decided it was best to take a break from daily meal trays. We would just focus on cold, soft, snack foods that are pleasurable for Jackie to eat. As much as this is a step back, it makes sense if you look at the overall recovery plan. Jackie is still adjusting to different meds and to have him struggle with something he doesn’t have to, does not make any sense. We are hoping this break will not last long.
Jackie rested in his chair in the room until Paula came to get him for OT. She was bumping up her session timing with him and splitting it in half as she had to leave the hospital early. She took Jackie to the gym for the first half of the session and then transitioned him to Erin for PT. A highlight of PT was Jackie’s left leg movement. He was actually able to lower and then lift his left leg up and down. PTL
Jackie was getting tired but we wanted him to stay up until after his last half hour of OT, plus Grandma, Grandpa, Nana and John were here for a visit so we all sat outside on the second floor terrace for a visit, enjoying the beautiful day. The time went quickly and we returned to Jackie’s room for his noon nutrition. Then there was a little bit more time left for visiting before OT. To save Paula some time, Jim and I took Jackie to the gym. He was visibly tired and actually also voiced the same feeling. Paula had planned another try at the motorized wheelchair. Even though he was tired, Jackie wanted to give it a go. Jim and I stayed and participated in the session. Paula had Jackie maneuver the chair out of the gym, on the elevator and onto the outside sixth floor terrace. There was much coaching done along the way. Jackie’s impaired vision is a challenge as well as the fact that he forgets to look to the left. Jim and I were his targets to help keep him going in the right direction. Paula stayed by his side to take over the controls when necessary. Overall he did really well. It was such a joy to see him laughing and to see the wind in his face as Paula let him pick up the speed on the open space of the terrace. We also joked about not hitting walls and other objects. Jim and I could see first hand how using this type of wheelchair will help therapeutically in many beneficial ways until it is time to move him back to a conventional chair. Jackie still needs to get some practice under his belt before he makes the transition, but this is a work out that Jackie will look forward to.
We got Jackie in for a late nap and he fell asleep right away. He was beat and needed some time to recharge. After a little over an hour he woke up and finished visiting with his grandparents until they had to go. Instead of going to the cafeteria, Jackie enjoyed a Magnum bar on the second floor terrace. We moved up to his room so Jackie could get some meds and then we all watched some TV. Jackie said he was still hungry so we gave him a frozen dessert we still had in the freezer. It was a banana and strawberry whip and it is everything that Jackie needs, cold, nutritious and soft. Colder foods help stimulate the swallowing response and soft foods are obviously just easier to eat. After eating a good portion of the dessert we got Jackie ready for bed.
We connected with Lindsay via phone for a quick catch up. We have found that Jackie responds better when he holds the phone to his ear. To our surprise he had the longest conversation he has had with Lindsay in a while. PTL. Granted he only spoke a couple words, but this was huge progress from the last call. Lindsay is very good at mixing conversation with wait times of silence for his response. After they were done, I was able to catch up with both Lindsay and Florent! The night ended with Jackie falling asleep as he watched the opening home game of the Flyers.
Life takes all of us for rides, how we handle the bumps and hills is up to us. We can choose to complain every step of the way or choose to hold on and ride it out focusing on only the positives. Jackie is doing just that and this marathon will eventually stop at the station and it will finally be time to exit the ride.
“Success goes to the ones who do. Get up. Show up. Throw up if you have to. Do it afraid, but do it no matter.”