Day 71 (Nov 4)

Today we had the second family meeting with the medical and therapy staff.  The doctor explained that he wants to go up on the brain stimulant and the muscle relaxant for Tobias.  We also learned that the main storming medication was halved two days ago, which helps to explain why Tobias has started to storm more frequently than before.  I asked the nurses if anything had changed with his medication, but they must not have realized that the storming medication dose had been reduced.  The doctor is trying to balance Tobias' medication to maximize his wakefulness and minimize the storming.  It's a process of educated guesses to optimize the mix of medications.  It's probably not possible to remove all storming and keep Tobias completely alert.  There is a trade-off between storming and wakefulness.  The doctor signaled in the meeting that he would like to be more aggressive with the treatment and risk a higher level of storming in order to get more responsiveness from Tobias.

The doctor explained that a normal stay in the rehab hospital is six to eight weeks and we should expect Tobias to move to the next stage of his rehabilitation in the early December time frame.  This decision confused me because Tobias is still making clear, steady progress, but he is nowhere near being able to care for himself and regain his former life.  This is apparently an insurance compromise in the US system where it becomes more and more difficult to keep a patient in the rehab hospital.  There is no scenario where Tobias would stay in the hospital for several more months until he has reached his "new normal".  Tobias was admitted to the Disorders of Consciousness program, which means that the hospital is willing to work with him even though he can't meet the minimum criteria for a normal rehab program of actively participating for three hours a day in therapy.  It's an iffy proposition whether Tobias meets that criteria today, although with the progress he has made over the past two weeks, I think he would qualify.  One path forward for Tobias could be to transfer to a skilled nursing facility for a few weeks and then get readmitted to the rehab hospital for a "normal" rehab program, which would be identical to his current treatment.  A normal stay would also be six to eight weeks after which he would either go back to a skilled nursing facility or be discharged to our home, which would have to be kitted out with facilities to care for a paralyzed adult.  Tobias isn't paralyzed, but he can't contribute to his own care or communicate readily.  We would have to redo the bathroom to accommodate a way to shower him, add a lift to our stairs and build a wheelchair ramp at a minimum.  We would need to get a new car as well.  Katja has been researching what Tobias' care would look like in Germany and she was told that Tobias would be admitted to the acute care ward of the hospital for evaluation and would then likely be transferred to a rehab hospital.  It appears that the rehab care in Germany is based on the patient's ability and is not limited to an eight week period.  The likely scenario is that Tobias will stay in the rehab hospital for several months as long as he continues to make progress.  The downside to Germany is that the rehab hospital, a facility that specializes in rehabilitation for children and young people, is over an hour away from our home.  The visitation in German hospitals is also much stricter than in the US.  The rehab hospital allows one visitor per patient and the neurological hospital where Tobias will be evaluated allows one visitor for one hour a day.  We believe that the best option for Tobias is to return to Germany and continue his rehabilitation there.  We value the care that he is receiving here and have the highest regard for the professionalism and human touch that he receives from the doctors, therapists and most of the nurses and aides.  Our current plan is to stay here as long as we can and the natural time to plan a return will be the first or second week of December.  This means that we have a few more weeks left to get Tobias as shipshape as possible for the return trip to the Fatherland (in Tobias' case the motherland would be more appropriate).

Returning to Germany will be an adventure by itself.  We know little about it and it will be organized by the company behind the travel insurance that Katja purchased for Tobias' trip.  We've heard that it can be as exotic as a chartered jet that flies at a higher altitude than normal to avoid turbulence or it can be as simple as blocking off a section of seats on a commercial flight with a curtain so that Tobias can be cared for during the flight.  Tobias will likely need to lie down for much of the flight and may need medication and personal care during the flight.  He will be accompanied by a nurse who will be able to care for him.  We don't know if one of us or both of us will join him for the flight.

I should note that in every case the insurance companies have been very good to deal with.  The US insurance has assigned a company to liaise with us and guide us through any issues we run into (like the bill for $72K that we received for the 25 minute life-flight from my home town the the city where the hospital is located.)  The nurse was knowledgeable and helped us get the insurance company to resubmit the bill so that it would be covered as part of Tobias' overall care.  The insurance worker who took my call was friendly and happy to resubmit the bill.  Our insurance contact in Germany has been caring and helpful, and the travel insurance representative has assured us that they will take care of Tobias' repatriation to Germany.  They have answered our questions and not given us the feeling at all that they were trying to maneuver us into a lower cost position.  The only negative experience we have encountered is with the university where Tobias has been a student.  Tobias is covered by a secondary insurance for catastrophic events that should pick up costs not covered by the primary insurance.  The initial call was friendly and promising, but it has been over two months and the man I spoke with has not returned the promised information.  He won't take my calls and has promised through the admin person to call back twice without following through.  I don't think the university is trying to avoid supporting Tobias.  My guess is that we are dealing with someone who isn't doing a good job, but it reflects poorly on the entire institution to leave the parents of a barely conscious patient hanging for two months.

Tobias continued to storm today similar to the last two days.  His heart rate has been over 100 for most of the day.  We were concerned that the nurse would have to use a catheter to empty his bladder because the doctor increased the medication that causes retention and Tobias hadn't urinated since 11:30 this morning.  We kept hoping that he would be able to urinate on his own, but by 7:30 at night we gave up and informed the nurse that Tobias would likely need to be cath'd.  At 5pm the nurse had used an ultrasound to measure the volume in Tobias’ bladder and confirmed that he was holding onto 400 ml of urine.  By 7:30 with no release, we knew that he needed help.  The nurse agreed and left the room to get the necessary equipment, but by the time she returned, Tobias had taken care of business all by himself.  That was a close call.  Maybe Tobias heard what was happening and found the necessary motivation to get things moving.

Tobias was able to speak a few words today, but it is a struggle for him.  He was just repositioned and his heart rate is in the low 80s.  It feels the opposite of yesterday when we left Tobias in a poor state.  Now it is time for us to leave and Tobias is doing as well as he has done all day.  The sky looks the bluest after a storm.

Hope over fear.