Day 76 (Nov 9)

Today was spa day for Tobias, or at least as close as the therapist could make it into a spa day.  Tobias' rehab doctor pointed out that it wouldn't be a good idea to submerge the entry point of the feeding peg in Tobias' torso to whatever may be floating around in the water so Tobias' immersive bath ending up being a sitting bath that reached just over his legs.  It still did the trick, however, and Tobias was super relaxed after the bath treatment.  The area of his brain responsible for controlling his left arm sustained the most damage for motor skills.  Tobias has frequently pulled his left arm up to his chest with his hand distorted downward.  It looks like a painful t-rex limb and it is usually full of tight, stressed muscles.  The brain just can't tell it to relax.  Occasionally Tobias will be relaxed everywhere, but if any part of him begins to show tone, it's his left arm.  After his spa treatment, Tobias left arm was loose and flexible.  The PT has a new student who is joining the sessions and the prior student has moved to a new location.  The PT, the student and the OT lifted Tobias in and out of the bath tub without the aid of any lift.  The student noted that Tobias is much lighter than he was expecting, which is what 76 days of no exercise and hospital food will do for you.  Tobias looks emaciated in his legs and hips.  He still has some muscle mass in his arms and chest, but even there he has lost his size and definition over the past several weeks.  It's an easy trade-off to accept when you consider that his muscle mass stuck around for so long because of the difficult storming that Tobias endured.  Once the therapist team had Tobias back in the wheelchair and covered in towels, they wheeled him to the back of the first floor where they have some soft padded tables.  They manually conveyed Tobias from the chair to the table where they could dry him off and dress him in clean clothes safer and easier than in the wheel chair.  The three of them plus me makes four so everyone grabbed the closest arm or leg and stretched or articulated it for Tobias.  He still remained loose after all the external manipulation so the PT decided to have him sat up in place.  They placed shoes on his feet with wedges underneath them so that Tobias could feel the stretch that future Tobias will need to be able to walk normally.  I couldn't see that he was able to support his body at all, but each try puts him closer to success.  Shortly thereafter the spa day was over and I pushed Tobias back up to the room.

Katja and I decided to go for lunch and two aides were kind enough to put Tobias into his bed for us.  The floor we are on has a kitchen that is officially for the patients to learn how to cook again, but we have yet to see any patients use it for that purpose.  We aren't allowed to use the stove, but we can use the microwave and ice/water machine.  Sometimes we eat in the cafeteria, but I prefer to bring a soup to heat up and enjoy our lunch in the relative solitude of the kitchen.  There are three other cafeteria options for lunch and we've tried them all with success, but today we had our soups in the kitchen down the hall.  We discussed the trip back to Germany and we would both like to have a date set as soon as possible so that we can make plans.  Katja is concerned that we may need to quarantine when we fly back to Germany.  She is concerned that Tobias will find it distressing to be alone his first week back in Germany.  This would be doubly difficult because things will be done differently and German is less easy for Tobias than English.  We first need to hear back regarding the medical transport flight, but there is now a scenario on the table where Katja flies back a week early to get the quarantine behind her so that she'll be there for Tobias in the hospital.  The rules in German hospitals are quite draconian for families.  Currently each patient is allowed one patient for one hour a day so Tobias will have to manage on his own regardless of the quarantine rules.

Katja had an appointment with her therapist after lunch so I returned alone to the room and participated in Tobias' speech therapy.  I missed the first 30 minutes of the 45 minute session, but the ST told me that Tobias had spoken several times and was able to purse his lips and blow air through them.  Today's session was about practicing the building blocks of speaking for the first thirty minutes and working on swallowing for the final 15 minutes that I got to see.  Tobias was initially so listless that he didn't respond to the juice on his lips.  Once Tobias' mouth had been suctioned with the wand, however, Tobias seemed awake and took in some large sips of juice.  I continued to work with Tobias after the session ended and the ST left, but Tobias didn't intake much juice for me.  He was unable to keep his eyes open and his mind in the present.  Today is the first day that he is getting a full double dose of Modafinil, the brain stimulant medication so we're hoping that he wakes up in the afternoon.  He received the second dose at 1pm.

Just as I was brushing Tobias' teeth after his juice practice, the volunteer lady with the therapy dog knocked on the door and came in the room.  This woman's son damaged his spinal chord in a car accident 30 years ago and worked through several years of therapy to gain the use of his arms and his voice, but not much else.  He can drive, work full time and has a family of his own.  The experience so inspired her that she decided to do something to give back to the medical staff that helped to save her son.  She joined that therapy animals program and has been bringing her golden retriever to the hospital for many years.  I'm not sure what generation her current therapy dog is, but she comes every week.  Katja and I made her acquaintance several weeks ago when we were walking with Tobias outside in the garden.  She told us that she would drop by to see Tobias every week and she has been true to her word.  We've changed rooms twice since then, but she tracks down Tobias each time.  Today we put a towel on the bed and had the dog lie next to Tobias.  This is the first time that Tobias has been alert during her visit and the presence of a dog on the bed kept his rapt attention.  The doctor told us that part of the damage on the right front of Tobias' brain will impact his motivation and ability to stay focused.  This contributes to Tobias' struggle to keep his eyes open or repeat responses multiple times in a row.  Tobias' didn't need a lot of reminding to stay awake for the dog, however.  He can't move enough to stroke the dog, but I put his hand on the dog's head and he kept it there.  He even held a treat between his thumb and index finger for the dog to take.

Tobias is getting the Botox injections today.  Botux is the tradename for botulinum toxin, a weaken form of botulism.  It works by paralyzing muscles or blocking nerves so that wrinkles disappear or, in Tobias' case, an arm being abused by errant brain signals can finally relax.  The injections will be given directly into the muscles responsible for three motions: 1) flexing the elbox 2) flexing the wrist 3) flexing the fingers.  Tobias' left arm has been pulled up tight like a grotesque chicken wing since the injury and he runs the risk of experiencing a contracture, a fusion of muscle and bone so that the patient loses the ability to move the muscle normally.  The botox will significantly weaken the muscles causing the errant movement.  Only the main muscle groups are being injected so the idea is that hopefully secondary muscles will be within Tobias' control and he may be able to "make contact" with his left arm.  In any event, he should be spared the pain caused by the pernicious pulling of the flexor muscles.  This will likely result in a further reduction of the storming that we still see pop up from time to time.  The risks are very low and include infection or bleeding at the point of the poke.  The more serious risks are that the toxin could enter the blood stream and travel to the lungs or head and cause problems with breathing or eating.  For this reason the doctor will inject the muscles as far from blood vessels as possible and the needle itself has an sensor that emits sounds corresponding to the electrical activity in the muscle.  Muscle areas that emit a lot of sound are the areas that are receiving the most errant brain signals.  These are the muscles that get the botox treatment.  The doctor also pulls back on the syringe before pushing the toxin into the tissue to ensure that no blood comes back into the needle.  This guarantees that the medicine will not be pushed into a blood vessel.  The doctor thinks that we should see results after three days with a maximum benefit occurring at the three week mark.

Hope over fear.