Forrest visited NRH yesterday. “ It has been a long December but there is reason to believe maybe this year will be better than the last”, stealing a line from Counting Crows. While we would prefer to be in a better position medically and cognitively we have been in worse positions. A year ago Forrest was lying in a coma that we had been told he might not wake up from. So while we struggle thru the daily grind of caring for him, turning every two hours, making the smoothie we know things can be much worse and we are thankful and optimistic that this new year will bring some consistent positive changes. The challenge for his caregivers and friends is to ignore the past and all the things we wish had been done differently, focus on the present which is where he desperately needs us all and remain hopeful for the future. We know he has one or two more major surgical procedures and we are trying to strengthen him for those.
His friends going back to school without him has taken a noticeable toll on his attitude. We do our best to cheer him up and he still laughs at movies and bloopers. Nick was here almost every day during Christmas vacation and Forrest really enjoyed his visits and the visits from other good friends. We and Forrest missed them when they went back to school and obviously it is hard to watch them go, knowing Forrest should be with them. Keep those videos and messages coming back in we are showing them to him.
Yesterday was a major event of his recheck at NRH. It took the new 44mobile, his tilt table innovatively strapped in so he can lie down, since he can’t go that far in a chair yet. So it takes a driver (me), Mom and Austin in the back helping out and Chad, a LPN,EMT who was along to help if we got in a jam. The system currently requires placing him on the table bodily and then removing him and placing him in his chair when we arrive. So Maylin was in another vehicle with his chair. We expect to fine tune this system a bit over the coming weeks. It is still challenging to take him out particularly for the longer jaunts. Yesterday required several in vehicle adjustments and suction sessions but nothing that turned to a big time emergency. We travel with a lot of gear and meds so we are prepared for some but not all problems.
Forrest arrived did his recheck and did well. We are adjusting several medications based on the Doctors recommendations and our experiences on what we are able to do with him. Then two of his therapists came down to see him in the outpatient area when they heard he was back, he seemed glad to see them. He then went up to 3rd floor Neuro pediatrics and was greeted by the nurses ,Doc’s and others on the floor like a Rock Star! Everyone was excited to see Forrest back.
Our nursing situation at home has stabilized dramatically over the last week or two and we can all feel better but we still miss many of the smiling faces of the nurses at NRH, it was great to see them again.
Team Forrest trucks on!
DadMaylin test rides the new tilt table