Day 80 (Nov 13)

On November 8 Tobias finished a container of cranberry juice for the first time since his injury and I declared "Cranberry Juice Day" a new Dunn family day of remembrance.  Judging by those same standards makes today "Peach Cobbler Day".  Tobias has been steadily improving his ability to ingest spoon-fed food, but he has only managed to eat about 25% of the portions that the hospital delivers.  Today he received a Goldilocks meal of pureed turkey (too dry), pureed green beans (too bland) and pureed peach cobbler (just right!).  Like the responsible father that I am, I tasted each option to make sure that the food wasn't too hot and to see if the hospital food was any good.  I fed him the green beans and turkey first, but he was having trouble staying awake and I was worried that dinner wouldn't provide much swallowing practice.  I learned that he responds better to juice and especially well when the juice is served on the rocks.  The cold seems to wake him up and and provide an extra sensation.  I gave Tobias some icy cranberry juice when he was drifting off and that kept him awake enough to get some of the peach cobbler in him.  He seemed to really like the peach cobbler and he was able to keep eating.  It was slow going and I still have to pry open his mouth with the plastic spoon so that I can place the food inside, but he was able to swallow and go for more.  A few times he even opened his jaws by himself without any help from me.  He can't open his lips, except when he yawns.  Eventually we passed the 25% mark and then the 50% mark.  When he had eaten 75% of the cobbler, I knew that we had a chance to make today another Dunn family holiday and I refused Katja's admonitions to feed him some more of the healthier foods.  I wanted him to practice swallowing and the turkey and green beans just weren't getting the job done today.  Tobias seemed to struggle for a while, but was able to clear his mouth with some more juice.  I asked him whether he wanted more peach or if he had had enough.  I was pretty sure that he was done, but he hadn't been speaking today and I was unsure what to do when he swallowed big and said "peach" very clearly.  After that it was easy.  Tobias finished his first full portion of hospital food and today is "Peach Cobbler Day".

Tobias has been speaking more over the past few days, but today he struggled to find words.  His eyes were alert and open, but he just stared and wouldn't answer questions.  He did say a few things, but they were rare.  Twice, when I was leaning over and trying to connect with him, he stared softly back at me as if he were trying to understand what I was trying to do.  We locked eyes for over a minute and I tried to communicate with my smile that everything was fine, but I was wondering why he wasn't able to speak.  Other times under similar conditions he would be able to answer several questions in a row.  I used the warm wash cloth to prime the verbal pump, but it didn't work today.

Tobias shows motor movement progress today.  When I was feeding him I asked him to lift his hand to take the juice cup and he lifted his right hand quicker and farther than he has managed before.  Moments like that build confidence, or at least hope, that he will be able to regain a normal range of motion at some point in the future.  Katja was adjusting his foot position and decided to give him a tickle on the bottom of his feet.  Tobias' nerve pathway that controls the tickle reaction are damaged and his feet do not react to tickling.  At least not until today, Katja was so excited to see Tobias' foot bobble about trying to get away from the tickling that she subjected Tobias' foot to more tickling that I'm sure he appreciated.  I was wonderful to see this reflex reestablish itself for Tobias.  Tobias is slowly healing.  His brain is a puzzle that we need to help solve so that he can build new pathways for his nerves to control his muscles.  Tobias has the heavy lifting to do, but without more communication from him, we don't know if he even realizes what he needs to do.  In many ways he is like a newborn baby to us.  He is helpless and requires complete care.  Sometimes he manages small responses to our queries, but most of the time I'm reminded of how it was to work with Eloise when she was born, just over a year ago.

Tobias' ankles have become very stiff and contorted.  The nursing staff and we have let him down in this regard.  I think that lying in bed for so long with the weight of his legs and sometimes more weight from the body has been placed on his heels.  The initial fear is that this would create a pressure sore that would be both painful and difficult to heal.  Tobias has avoided pressure sores, but the weight on his heels has tilted his feet inward at the ankle similar to twisting one's ankle.  I think the initial structural defect was caused by the storming that turned his feet inward, but forgetting to take the weight off of his heels has resulted in a difficult problem to solve.  His feet are now contorted in their "natural" resting position and his toes often touch when he is laying in bed.  It's like the last two month slowly brought Tobias' ankles halfway through a sprain and the muscles and tendons are now shortened and don't want to give up their sprain victim.  The massage therapist today worked for 15 minutes on Tobias' feet and Tobias dropped from a heart rate over 110 down into the 70s, at least for a short period of time.  He must be in pain from the ankles and we will focus on gently stretching and massaging them to win them back.  It's going to take weeks.

The doctor put Tobias on Ritilin to help reduce the errand brain signals.  The timing of the Ritilin is suspicious, because Tobias has experience an elevated heart rate today.  He was in the low 100s for much of the day and frequently passed 110.  After we focused on the ankles during his massage therapy we successfully kept the heart rate under 100 and he is now at 80.  It's hard to know what caused the heart rate spikes, but it usually is a pain related stimulus.  Once the pain is addressed the storming or high heart rate is reduced.  Katja took Tobias for a long walk outside in the beautiful fall weather and his heart rate stayed in the 80s.

Hope over fear.