Day 31 (Sep 25)

Bottom line: The second day of rehab for Tobias was much like the first, except there weren't as many therapy sessions.  He continues to storm, but not so much that his well-being is seriously threatened.  Tomorrow should be a very quiet day for him and we hope that he rests up so that he is ready for a full day of therapy on Monday.

Detail: 

Today was Tobias' second day in the rehab hospital.  It was a Saturday so his schedule was reduced.  Tomorrow will be even less active for him.  His condition was similar to yesterday.  He seems to be tired and in need of sleep, or at least he finds it too strenuous to stay alert.  His first appointment was with the occupational therapist in the late morning.  Katja and I tried to wake him up by speaking with him and I took him through his range of motion exercises, but he remained very stiff in his arms and didn't ever wake up.

There is a large TV in the room with an Apple TV.  Yesterday one of the nurses' aides helped us to get Netflix installed and we got our account up and running.  Tobias loves watching David Attenborough nature documentaries so I selected one of the "Our Planet" episodes this morning and we played it for him.  It, at least, helped him to sleep comfortably.  When we lived in England, the castle used in the Downton Abbey series was located about 30 minutes from our home.  We went there as a family and had a great day looking around and taking pictures.  We thought that seeing an episode of Downton Abbey might spark a memory for him so I started off with season one on Netflix.  I had to laugh when Tobias' left eye popped open and focused on the screen.  Tobias wouldn't be considered as the number one Downton Abbey fan, but he watched most of the episode today before drifting off to sleep again.

Tobias remained minimally conscious during the occupational therapy visit.  She spent most of her time trying to get his arms to relax without much success.  Tobias' arms have been very difficult to work with for the past two days.  He is still very muscular and spends much of the day with his arm muscles contracted and his hands clenched tightly.   He wears a splint on each arm that are taken on and off every two hours.  The splints are secured to his forearms with velcro straps and cover his wrist, palms and fingers.  His fingers are stretched out flat on the splints and held in place with another velcro strap.  The purpose of the splits are to keep Tobias from curling his fingers into tight fists because a constant clench would lead to the muscles and tendons in his hands binding and causing potentially permanent damage called contractures.  Despite the splints, Tobias manages at times to curl the tips of his fingers into his palms which looks especially painful because the splint then acts as a hard barrier against which Tobias unwittingly uses as a lever to press his fingers even tighter.  We watch him pretty closely to work his finger out of the pretzels that he sometimes presses them into.

The speech therapist came again today and Tobias did worse with the breathing vent today than he did yesterday.  The ST suggested that he will swap out the trache tube with a smaller diameter to give Tobias more room in his throat around which he can push the air past the trache and up and out through his nose.  Apparently the current tube is taking up too much space and Tobias can't figure out how to exhale the air around it to reach his nasal cavity.  Tobias also was unresponsive with the tooth brushing exercise.  He is going to need more time.

Katja and I both felt today that we are in limbo.  We have that unsatisfying feeling that comes from being stuck in between and not knowing what will happen.  We've been told many times that the progress will be glacially slow, but one never really knows what that means until one experiences it.

Tobias' vital signs were the same today as yesterday.  His heart rate ranged from the high 70s to the low 90s when he wasn't storming, but reach up to the low 130s when he was storming.  His sweating is causing a problem with his skin.  He has a rash on his back from his shoulder to his neck.  His doctor has prescribed him something for it, but it is easy to see how lying flat in bed with storming systems can easily lead to discomfort and ancillary problems.  We are trying to supplement the eyes of the medical team to catch issues before they become problems.  The nurses and doctors will catch the problems at the latest when it expresses itself through the vital signs, but by then it is often advanced and will take days to resolve.  It's much better for Tobias to catch the problem when it is only topical and hasn't impacted his fever, heart rate or blood pressure.  The risk of something causing a problem for Tobias increases our stress levels, because we feel responsible to protect him, but there is no going around the problem.  We are grateful that we can watch over him and hope that we give him the right impulses to stimulate his brain to consciousness and the right protection to fully recover.  We don't have a road map to where we are going, but we keep our eyes open and try to make the right decision at each turn.

Hope over fear