Day 53 (Oct 17)

After yesterday's shocking verbal miracle, we didn't know what to expect today.  Tobias receives 100 mg of the brain stimulant, Modafinil, at 9am and by 11am yesterday he was storming.  Today, however, he didn't storm at all in the morning.  He received the normal medications, but when we arrived the nurse and his aide told us that Tobias had a very calm night and they believed that Tobias was especially sensitive to noise and activity.  They kept the door shut and minimized all stimulus and Tobias was as calm as a sleeping puppy with a heart rate in the low 80's.  We didn't want to rock the boat and remained quieter than flies on the wall.  There is no therapy on Sunday and so we just let Tobias sleep.  After an hour he woke up, but still had his HR in the 80s so we decided to take advantage of the continued autumn brilliance and take Tobias for a push outside in his wheelchair.  The next few days are predicted to be cold and wet and we wanted to make hay while the sun shines, so to speak.

The aide wanted the nurse to check Tobias before we left on our walk because Tobias eyes were fixed in the 1,000 yard stare and he wasn't focusing on anyone.  By the time the nurse came, however, Tobias had snapped out of it and was able to focus again.  As almost an aside, the nurse mentioned that Tobias spoke to him this morning.  When asked "how are you doing?" by the nurse, Tobias took a large breath and replied "I'm OK."

The walk with Tobias was relaxing and his heart rate stayed low, which is typical for our wheelchair excursions.  The sun was almost too warm for our light winter jackets and we ended up carrying them.  Katja took a washcloth with us to keep Tobias' face and especially his eyes shielded from the sun.  He sunburns easily and we don't know if his brain is engaged enough to close his eyes when exposed to the sun.  The fresh air felt good in our lungs and we welcomed the chance to get some use out of our legs.  We like giving Tobias a change of pace.  I'm sure it's good for his mental health as well as his physical health.  I still think about Tobias often when I'm lying in bed at night.  I have to move every 10 minutes in order to stay comfortable and I feel a sense of injustice that I'm able to shift my position at will when Tobias is stuck for two hours at least in between turnings.  I'm sure that sitting in the wheelchair is a liberating relief from the bed and the gentle jostling about as the wheelchair moves must be a comforting sensation.  He seems to enjoy it very much.

The latest wheelchair fashion accessories

We brought Tobias back to his room at noon so the nurse could administer the medications and feeding.  We let him chill for another hour in the chair and then the aide came in to help us transfer Tobias to the shower chair for a running water shower.  The aide seemed very nervous, but we promised him that we were comfortable with the procedure and that everything would be fine.  The aide has been one of the best aides we've had.  His concern wasn't in his abilities, I don't think, but he wanted to make sure that we did everything right for Tobias.  We ended up putting Tobias back in the bed from the regular wheelchair so that we could more safely remove his clothes and prepare him for the shower.  Then we lifted Tobias into the shower chair and pushed him into the shower room, where the water had been running to get comfortably warm.  Katja stayed out of the shower room because ever since Tobias was able to speak to her last night, she has worried that he is all too aware of what's happening around him and she supposed that Tobias would be more comfortable getting showered by a stranger plus dad rather than a stranger plus mom.  The aide and I had no problems getting Tobias spic and span and ready for the ball.  I had the honor of applying the soap to the washcloths and, after the aide inadvertently directly sprayed me with the showerhead twice, I was promoted to showerhead holder so that the aide could use two hands to wash Tobias.  I also did the honors in shampooing Tobias' hair.  It was a privilege to carefully hold Tobias' head in one hand and gently massage the baby shampoo into his hair stubble with the other.  I felt close to him as I irrigated his scalp with the warm water and washed away the shampoo lather along with the oil and sweat that had accumulated over the last few days.  It's an unusually personal experience to shampoo someone's hair because it feels like you are sharing something intimate and soothing.  It was a joy to express my affection and devotion by providing Tobias this small service.

Once Tobias was dried off and back in bed, he set a new record for the lowest heart rate since his injury.  For two hours he rested deeply and spent most of the time with a heart rate in the 60's.  His heart rate dropped into the 50's for several minutes and bottomed out at 55, which is astonishing compared to the 120's he frequently hits while mildly storming and much lower than the 150's he experienced during his heavy storming, let along the highest heart rate he saw at 195.  Katja and I have seen many lows over the past 53 days, but today we got to soar on a high for several hours.  I was almost giddy as Tobias slept comfortably with a normal heart rate and exuded nothing but peace and rest.  He wasn't particularly responsive today with his thumb.  I don't think I saw him move it at all, but he spoke with the nurse and was close to speaking with us at one point.  He was making guttural sounds and moving his mouth.  His eyes were open and focused and it was clear that he wanted to say something, but we couldn't make sense of it.  We let him sleep most of the day, but in the late evening he was alert for several hours and I worked with him on the speech therapy exercises for 30 minutes.  He was unable to drink anything from a straw, but he could open his jaws wide enough for me to feed him several small pieces of crushed ice.  The brain stimulant medication appears to be having a positive effect on him without the dire storming consequences.  He did storm lightly during our evening wheelchair stroll and continued to posture and stiffen when back in the room, but it was more of an annoyance that we couldn't get more responses from him rather than evidence that he was suffering or in danger.

Hope over fear

The all-time low heart rate record.

We don't spend all our time at the hospital sitting at Tobias' bedside.  Here Katja has just finished demonstrating the proper way to open a soy sauce packet during lunch.