Jackie had another good night. He never sleeps through, but he is having longer nap periods with less time in between them. He is also staying awake more during the day. All signs of getting back to some sort of normal, if that is possible in a hospital.
The Neurosurg team stopped by early this morning and decided to stay the course for yet another day. Every hour spinal fluid was once again drained from Jackie’s Lumbar drain. Tomorrow morning we will meet with them again for next steps.
Jackie had another PT session today. As planned they worked on his torso and neck strength. He then sat in the PT wheelchair for about 2.5 hours. During that time he had to get a new bed as the bed alarm malfunctioned. Even though this is not a concern with Jackie, because he cannot get out of bed on his own, it is hospital policy so the change was necessary. We also had a bed malfunction at Geisinger. I think that is a sign that it is time to break this joint.
We were disappointed as the ST team was unable to meet with Jackie again today. We will put in a request early tomorrow morning to make sure we can see them.
Jackie seemed a little down today. I can’t blame him. I can’t even imagine what it feels like to be lying there, hearing all the medical jargon about major things relating to you and not being able to talk. Somehow his strength and perseverance are getting him through. He lightened up a little bit at the end of the day. His Grandma and Grandpa and his Nana were here. Jackie enjoyed playing with a nerf basketball and hoop that Gma and Gpa found for him. Nana was telling him funny stories about the family pug that Jim grew up with and it actually brought a smile that turned into a silent laugh. That made us all feel better. We also FaceTimed Lindsay and Florent. Another smile erupted during the call. Don’t take smiles or laughter for granted. In fact, smile as much as possible and laugh until it hurts!
We now have just a small glimpse of what some parents are going through who have children with long term illness. These times call on strength that we never thought we had and faith that goes way deeper than it ever has before.
Thank you for running along side us and sending your prayers and positive thoughts to Jackie.