Day 112 (Dec 12) - Tyler post

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 weather.  I'm not sure it was ever nice, but things got busy with Tobias and I never got a chance for a good picture.  I'll ask Katja to take a picture to post in the blog.  

It takes 45 minutes to drive to the hospital.  There are few main thoroughfares between our home and the hospital so I spent most of my time on city streets with traffic and stop lights.  Luckily for me, it was Sunday so the traffic would normally be worse and I wouldn't have found such a good parking spot.  I was turned away on my first attempt to enter the hospital because the comfortable masks that are used by the nurses and patients in the University of Utah hospital are not accepted here.  I walked the short distance back to the car and grabbed the uncomfortable, but accepted by German standards, KN95 mask.  I had to also sign in and show my passport and vaccination card, but the man behind the desk was friendly in the end and wished me well on my way.  I found my way to the nurses station on Tobias' floor and was directed to Tobias' room.  There are two doors to enter into Tobias' room.  The first door leads to a small outer area with storage cupboards and a disinfectant dispenser and the second door opens into Tobias' room.  I not sure what the function of the "pre-room" is and I am wondering if it has a functional purpose at all.  Tobias is in a private room, which was unexpected, but the nurse later told me that Tobias is her most critical patient, which may explain the single room status.

Tobias slept unsoundly when I entered the room.  He looked fine on the outside, but his heart rate was 110 and his fever was 38.1C (100.6F).  Tobias hasn't had a fever for weeks and his heart rate was stable in the 80s and 90s for the most part.  I'm not sure if he is just adjusting to the new environment and ways of doing things or if he has an infection that his body is fighting.  I was in the room for several hours before anyone checked on Tobias.  A young doctor came in to just look in on Tobias.  He seemed satisfied that he wasn't in distress and was ready to move on.  I asked him how Tobias had done the night before, but he didn't have any specifics.  He interpreted this to mean that there must have been no problems, because he otherwise would haven been informed.  He asked if I had any other questions and answered some of Katja's questions since she was Facetiming with me and Tobias when he popped his head in the room.  He was friendly and helpful, but seemed to be in a hurry and spoke faster than any German I've ever spoken with.  I felt like I was speaking with the White Rabbit from Alice in Wonderland.

No one came in for another two hours and I had let Tobias sleep for most of the day.  His heart rate remained high and I decided to forgo letting Tobias sleep the whole time in an effort to stretch out his arms, hands, legs and feet, like I have been taught by our PT and OT friends in the US.  It surprised me that Tobias has stiffened up so much since his arrival in Germany.  His feet had made good progress in losing the grotesque pointed shape and stiffness in the last few weeks, but in the matter of a few days, his feet had returned to their problematic state.  Overall, I was saddened and concerned by Tobias' condition.  It is normal that he would take a few days to adjust, but he has regressed many weeks.  His heart rate and fever are prime indicators that something isn't right.  He was almost none responsive today.  I worked with him for several hours and only managed to coax two weak "ya"s from him.  Normally he would have been able to say several words clearly at some point in the day.  He struggled to move his arm, which has been the most reliable form of communication, but today it wasn't working.  The nurse finally arrived for her one visit of the day, but she was purposeful and thinking ahead in her concerned for Tobias.  She told me that she had 13 patients the day before and struggled to give each of them what they need.  She was happy to allow me to pick up some of the traditional nursing duties and showed me how to use the suction device to clear Tobias' mouth.  She also brought me some yogurt and a quarter glass of ice for Tobias.  It made me smile to see how little ice she brought when I suggested that it would be helpful for Tobias to drink some cold water and have a spoon iced and ready to help trigger his swallowing.  She only brought a small amount of ice, which is reflective of the European attitude toward ice.  I knew they don't prefer to have much ice in their drinks, but I learned today that their distrust of the utility of ice extends into the medical realm as well.

Tobias ate the yoghurt well.  It makes sense since it  tastes good and is easy to swallow.  It was a struggle to get him ready to eat because he had a large amount of mucous in his mouth.  I've never seen this before with Tobias, but Katja and the nurse confirmed that this has been a problem for days.  I suctioned the gunk out of his mouth and fed him the entire 125ml carton of strawberry yoghurt.  (Happy Yoghurt Day everybody!)  He was tired near the end, but cooperated enough to find the bottom of the plastic yoghurt container.  I had been feeding him water before, during and after the yoghurt, and grew concerned a few times when he struggled to cough out everything that found its way to his lungs.  He managed, however, and brushing his teeth was pretty easy since he had cleaned out his whole mouth by the end.

He is sleeping now and his heart rate is 85.  I repositioned him in his bed and that seemed to help relax him.  His heart rate can drop down to touch in the 80s, but heads right back to over 100.  In the time it took for me to write the last few sentences, his heart rate has jumped to 110.  This hospital is unfortunately the wrong place for Tobias.  He doesn't need acute care and this unit is not outfitted to give him enough PT/OT or ST.  The nurses are oversubscribed and don't have enough time to care for someone like Tobias.  He doesn't need acute care, but he needs more basic care than they are used to providing.  There is no facility to get him out of bed and into the shower and the bed is not as flexible as the bed in Utah, where it was possible to keep his head from turning to the left (for the most part).  We can't even put him in a wheelchair and take him for a walk.  I look forward to Wednesday, when he's scheduled to be transferred to the rehab hospital.  He needs more stimuli and activity, but we need to understand why his heart rate and fever are up and his responsiveness is down.

The nurse seems genuinely concerned for Tobias, but during her visit she mentioned that the doctor was worried about Tobias' heart rate and fever and ordered yesterday a chest x-ray to check for lung infections.  The xray took place after she left for the day, but she still didn't know the result this afternoon.  She promised to ask the doctor and get back to me, but I haven't heard anything in the two hours since her visit.  It makes sense that the US private health care system would be more attentive and responsive than Germany's socialized medicine, but it underlines how critical it will be for us to advocate and fight for the care that Tobias needs.

Hope over fear.