Day 89 (Nov 19)

Today is a news day.  Katja and I woke up to an early call from Germany.  The air ambulance company tasked to repatriate Tobias called to confirm that his medical transport flight has been approved and that they would be flying him back to Germany in the next few days.  This caught us off-guard because we have been working towards a flight in the first or second week of December.  The German lady on the phone sounded hurried and stressed and she wasn't interested in listening to any pushback on our part.  We didn't think it would be productive to argue with her so we thanked her for the information and decided to plan our immediate future on the commute to the hospital.

We think there is a good chance that we'll be able to keep Tobias in the rehab hospital more than just the next few days because the doctors want to complete another angiogram before Tobias flies to Germany.  We want some more time because we want Katja to arrive as our advance party to get over jetlag, take care of any Covid quarantine requirements (turns out we don't think there are any) and prepare to receive Tobias so that he always has a parent to rely on.  Our plan was to meet with the doctor at the hospital to get his support to push back on the return flight and to get Katja on the next flight out of Dodge.  Our backup plan is to not submit the image of Tobias' passport as requested until we have a return date that works for us.

The first part of the plan was easy.  I ran into the resident doctor in the hallway and he agreed that they don't want Tobias to leave until they can perform the angiogram and make some changes to his medication in preparation for a return flight.  He suggested that I work with the case manager to contact the German insurance company and settle on a mutually acceptable return date.  The case manager asked me to accompany him for the call in case the other party speaks no English, which surprisingly is exactly what happened.  The air ambulance contact only spoke German so I got to flex my language abilities.  In the end the lady agreed to have their doctors call our doctors and discuss when the return flight should be scheduled.  It is surprising that the air ambulance company isn't more flexible.  Our guess is that patients and their families would normally want to return to Germany as quickly as possible.  The patients want to receive care in their native country and the insurance company doesn't want to cover costs in the USA for any longer than necessary.  It makes sense that their standard procedure is to get the patient home as soon as possible.  In our case, however, neither condition is applicable.  We prefer to have a more controlled exit for Tobias and the German insurance won't be billed for the US medical costs.  I'm sure that once we reach the decision makers, cooler heads will prevail and a better return flight can be arranged.

The other surprise regarding the return flight is that Tobias must fly without any accompanying person.  The private jet is so small that it only has room for the patient and the medical staff as passengers.  Tobias is not allowed any luggage.  I was expecting to be with Tobias on the flight so that he won't be as anxious.  We don't know how much he really understands and we don't want him to be upset or concerned.  I haven't spoken with the rehab doctor yet, but I will ask him to recommend to let me return with Tobias.  Tobias does get nervous when changes happen in his environment and I imagine this trip will be difficult for him.  The jet is special because it has been outfitted to function as a hospital room.  Because the jet is small, it will have to make stops along the way to refuel.  We don't know how many stops or where they will be, but it makes me more determined to be with Tobias so that he has a familiar face amidst all of the change and travel stress.

Tobias had a good day.  He didn't speak much, but when I was feeding him his lunch, he raised his right hand from his side almost up to his mouth, which he has never done before.  He also mouthed several words, but I didn't understand them.  Since he has been chewing and swallowing better and better, I keep expecting that he'll start speaking more clearly, but so far that hasn't occurred.  

Tobias accomplished a new first today.  He finished the entire portion of the main dish during his evening meal.  Tonight's supper featured meatloaf and since he finished his entire serving, today is officially christened "Meatloaf Day" in the our household.  Join us next year on November 19th to enjoy a delicious meal of meatloaf in Tobias' honor.  He also twitched his left leg twice when I would massaging his feet.  I've never seen him do that and it could be just a reflex.  It could also be a result of the PT work to help Tobias stand and walk.  The pattern has been that PT asks Tobias to move a body part that he is clearly unable to move.  Then they move it for him and sometimes, in a week or two, he is able to slowly move the limb himself.  His movements are exasperatingly slow and weak, but they are a start for faster, higher, stronger movements later on.

Hope over fear.