Tobias' Recovery

  Dear Family and Friends,     Christmas was rather wired as you might have expected. My dad said that he had plenty of very nice Christmas’, one bad one will make no difference. It will teach us to appreciate the next Christmas even more. Mom remembered her Christmas in 2003. She was very ill, down with the flue and strep. It was no fun but the next 18 years and brought many years of joyful Christmas’s. They were just fun and very memorable.   I do want to mention that Dad, Sebastian and Emily with her family came to visit. We went on a nice walk and opened up some presents. I am not sure how I will talk about this Christmas in the future, will I even remember?     Only time will tell, I guess. I do have issues with sleeping, I had those issues since little, but nevertheless, I got so used to it, that I never thought anything of it. I used to be awake for hours before I was able to rest and sleep. My mom always wanted to address it, but medication was not really an option at my young

  Dear Friends and Family,   It has been a pretty cool day guy’s. Let me tell you, Covid-19 has changed a lot in my personal life, in the life of my family and of course in your life. Germany tests a lot. Here, in my new place at the REHA, mom and me and so everyone else is being tested 3 times a week. It is brutal. The nurses go up so high, that the pain is unbearable at times. Mom cries every time a little bit. I can’t express feelings so well yet, but the pain is visible on my face. I think Mom liked her test in the US better, the girl basically just touched the lower part on the inside of her nose. Well, different expectations or more empathy, whatever, I hate the tests but understand that the clinic needs to be rather safe than sorry. Who wants to be in a lockdown, right?!    Emily came to visit us with little Eloise. I really wished that I could have played with her like before. That was not possible, nevertheless Eloise decided to play with be instead. Mom was holding her in fro

  Dear Friends and Family,   What can I say, it has not been an easy week for me or my family. I have mastered another move, this time from the hospital to a REHA Clinic for kids and young people. As we all know, a move costs energy, even though if you are not the one doing the work.  Since I am not mobile yet, what I mean with this, I still cannot walk or reposition myself in bed. Just in case you wonder: Yes, I cannot get dressed by myself either, … and you are right, … I cannot use the bathroom by myself.  It’s hard, but do not worry, it’s just a process and I will relearn and reclaim my independence in time. My mom jocks at times and wonders if my table manners will improve since I am relearning the basics again.  Who knows, it will be exciting to find out. Dear God, I tried to be a good fellow over the years, have mercy on me. Teaching me to stay humble under such rough circumstances feels a bit harsh, but maybe there are more lessons to learn for me? In this line, you will find l

  December 15th: My day at the hospital was rather slow and uneventful. My mom would not say so, because of a mistake the nurse(s) made today. One of the morning nurses did not check off her 2 pm feeding so the second nurse came in and fed Tobias again at 3:30 pm. She was in a rush and decided to speed up the process. I did not like it and threw up a lot....A LOT! My mom was upset with the nurse. The nurse did not know what to do at that moment, so my mom had to take over, get a dish for me and start cleaning up. The nurse then got help and took over.  I felt like in between and was not able to say anything to calm my mom down and to tell the nurse that it is ok., that I am ok.  Nevertheless, the morning was good for me. The physical therapist came in to mobilize me. I was able to sit at my bedside, she stretched my feed and made me overall feel so much better. I was wiped out after these 40 minutes exercises. The speed therapist did not have a chance with me. So, she left. In the US,

  Dear Friends and Family,   on behalf of Tobias „Happy Third of Advent”, THANK YOU for all your good wishes, good thoughts and prayers. THANK YOU for supporting my parents in this. I am fighting, I promise. My mom came to visit me today which enlightened my day a lot.  My heart rate, the one my parents get so nervous about, even though the docs told them not to worry to much about it, better to look at my overall behavior of the day. I get uncomfortable with too many blankets, but then it really annoys me, when people take them all off me, because they think that makes me feel more comfortable. They are right of course, but how would you feel to be exposed not knowing what is showing and what is still covered. Everyone has learned that my body cannot handle heat to well. Yes! In the past, I loved it to be wrapped up in many blankets. Just saying. I get it, it is difficult with me. My brain still can’t regulate and operate my body that well. I am trying hard to give my brain signals an

Today is Sunday and it is my turn to spend the day with Tobias.  The German hospital rules only allow one visitor, but at least they have stretched the rules for us to allow our visitor to spend the whole day with Tobias instead of the prescribed one hour limit.  I haven't seen Tobias since the flight and he was whisked away so quickly after we landed that I didn't get to see him off.  He was loaded in the ambulance and driven away while the border patrol was checking my passport, living permit etc.  I was anxious to see him again, especially because his heart rate is so high and storming has come back for him. The hospital is in the center of Berlin and Tobias' room has a commanding view of the tall Berlin TV tower from East Germany as well as the largest church, called "the dome".  I intended to take a picture, but the weather here has been cloudy and dark, and I wanted to get a decent view of the panorama.  I convinced myself to wait for a break in the poor wea

Post from Emily: I last saw Tobias on October 9th in Salt Lake, which means it's been 63 days. Coming here today was very exciting. Tobias and I used to call each other every day, and lately I've been missing that a lot.  It's 1pm and so far Tobias and I have started Home Alone, watched a few TED talks, and listened to some of our favorite songs. His heart rate is hovering around 100, sometimes more, sometimes less. Based on his facial expression (his only way of communicating with me so far), he's feeling pretty gross. I wish I could help him. I feel like we're both so limited in our abilities that we're not meeting each other in the middle, at the point where we understand each other. This is me definitely wishing telepathy was a thing. Putting myself in Tobias' shoes, I realize being asleep is probably much easier than being awake. There's no fight while you sleep, and for a short time, Tobias gets to forget what he can and cannot do. I wonder if he e

Dear Friends and Family, 🎄🎅🎄🎄   As most of you know, Tobias and Tyler are back in Germany. I got here a week earlier to set things up and to recover from Jetlag. As I am visiting Tobias in the hospital in Berlin and Tyler is trying to catch up on his work as the breadwinner, it shall be my honor to continue with this blog. I see it as an honor because Tyler has been so devoted to writing about Tobias’ journey to recovery. I will do my best to write daily, but I am not as consistent as Tyler, I am much more emotional, and it unfortunately will be determined on how I feel. I realize at times I believe to feel Tobias’ pain and emotional distress. It caused panic attacks in me, which I am trying to handle with the help of a therapist. It made me realize that our mental health cannot be ignored. Being mindful seems so important now or even a bit more important than in the past. My goal in the next few months will be to help also Tobias with some meditation techniques. He can’t fight

 Tobias is in the hospital in Berlin.  Their visitor rules are strict.  They only allow one visitor per day.  The actual rules restrict visitation to one hour per day, but given Tobias' situation and the benefit that visitation presents to him, we have been allowed more time, but still just one visitor.  Katja will visit Tobias during the week and I'll see him on the weekend.  This weekend his sister will take Saturday and I'll get to see him again on Sunday.  This is a big change for me, but I'm glad that he will still have a family member with him each day.  Today was my first day of working normal hours in three months.  I've been working full time for over two months, but it meant working from 5 - 8:30 am and then fitting in a several hours during the day when Tobias was in therapy or sleeping.  It was fulfilling to be present for Tobias, but my body welcomes the new schedule. Since I'm not in the hospital, Katja will be taking up the blog duties as much as

Today is an unusual blog post.  I documented the trip as it happened, but since we flew through the night, I was unable to create a unique post for each day.  Here is my record of the trip that Tobias and I took to travel from Salt Lake City to Berlin on a medical transport jet. We made it onto the flight to Berlin.  Right now we are somewhere over northern Canada, but a lot happened since this morning. My alarm woke me at 6:30 and by 7:00 I was ready to walk out the door to the airport.  The transport team was supposed to pick Tobias up at 7am so I had plenty of time to make it to the terminal before Tobias arrived from the hospital.  Given the events of yesterday I called the hospital from the passenger seat on the way to the airport.  Tobias was again prepared for the ambulance trip to the airport, but no transport team had arrived yet.  Next I called the charter aircraft company at the airport and the front desk lady asked me to hold briefly while she called the pilot to speak with