Update:12:30am on 2/19

Forrest had a very good day today. It started with him trying and almost accomplishing getting out of bed this morning trying to go to the bathroom but happily no harm was done and more stringent procedures to keep him in bed were instituted tonight. We had a good talk with his lead Doctor today and the final opinion was to pull the tracheostomy tube which happened at noon today. This has made him vastly more comfortable and reduced his coughing substantially.

He had a good breakfast, if pureed eggs and watery oatmeal can be considered as such. He started with a rigorous PT and speech schedule in the morning and then had his casts cut off in the morning and turned into splints that he wears at night to keep his ankles and calf’s stretched out.

He went to lunch and they tried him in a standing contraption to eat which he distinctly did not like. He asked to be let down out of it and the therapist’s complied and took him for a long walk in a stroller instead and he did very well walking almost normally. He then chowed down on pureed hamburger and mashed potatoes and gravy with pureed pears and his comment to me was “ We’re not at Panera Dad!”

Since he had his trach tube out he now gets to get beyond the confines of the 2nd floor. I took him out this afternoon and strolled him around and he did ok but brain trauma patients in the Rancho 5 scale get confused and agitated on occasion and which elevator we got on confused him greatly. We weathered the storm together and eventually got out to the garden adjunct to Shepherd Center and then later when the recreational therapist and the rest of the family came he enjoyed himself in the sunshine and played catch and rolled himself cross-country and had a grand ole time.

We all then went up to watch a wheelchair Rugby tournament in the Gym that was amazing to watch. It was full contact with specially armored wheelchairs and looked like a cross between Rugby and soccer. Those games went on all afternoon and evening and we went back after dinner to watch it again. While we know he will not need a wheelchair in the long run, it was both amazing and heartening to watch serious athletes in wheelchairs and how hard they work and he enjoyed watching.

So a tired big boy finally gets back in bed after a busy and successful day that had drama but several notable successes. We hope he stays there and the bed and meds have been adjusted to help him have a good night’s sleep. We will check on him of course but bed alarms and nurses are all on the alert. We hope he passes through this confused state as rapidly as he has passed by the others. One of the nurses told us that they are not used to seeing patients progress through the various physical and mental stages as rapidly as Forrest has been doing. We know that there are still plenty of hardships ahead but after a day like today you can’t help but be very hopeful and feel blessed to help him through them.

The quote of the day is once again from a coffee mug I bought my superstar Mom (Rae). “Life isn’t about finding yourself. It’s about CREATING YOURSELF.” This is obvious every day here at Shepherd. Out there in the real world we are all trying to find ourselves, to little avail usually. In here, you watch Forrest and others recreating themselves from the ground up and are astounded by what they can do and overcome. It makes you slightly ashamed at what most of us gripe about in the real world from day to day.

Written by Kent but with all the real work being done by Mom, Austin and Aunt Lynn. Thanks to everyone who reads it and suffers through our rough times and celebrates days like today with us. Thanks most of all to Forrest who after Aunt Lynn showed him everything he did on his schedule today said, “So tomorrow again”? Always with a grin.

Us watching rugby

Forrest and Dad

Forrest looking at cards with Aunt Lynn