Day 110 - 111 (Dec 10 and Dec 11) - Katja Post

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 it or tell me “stop”, since he still does not communicate the way we want him too. Nevertheless, we can look at the monitor and see how his vitals react to it. I will keep a close eye on it and report. I will use headphones and one specific app for meditation.

“Mindfulness is the practice of purposely focusing your attention on the present moment—and accepting it without judgment. Mindfulness is now being examined scientifically and has been found to be a key element in stress reduction and overall happiness.”

The hospital's goal is to help people with the least financial expenses possible. Unfortunately, it also means the least amount of care. As a patient you will get the treatment to stay alive and to find some healing, it does cover often only basic needs. Tobias receives his basic needs currently, food, meds and some hygiene care.  It makes me sad to see him like this. No wheelchair close by to have him get out of bed. There is no way to have him moved to a shower chair either. Crazy. We had great care in the US, so I am grateful for that. I don’t want to complain about the hospital care, but it is hard to see that people who are not able to move themselves must be in a place where no stimulation to body and mind is given. If we as a family would not be able to be there for Tobias, I mean being there physically, it would have a big impact on his mental and physical wellbeing. As I'm writing this post it is Sunday, and Tyler is with Tobias today. I packed up a foot mask for Tobias, a plastic sock covered with a special lotion. You let it sit for 30 minutes and then take it off. People who cannot move their body (or lift lots of weights at the GYNM … J   ) built up callouses, a rough and thick skin like substance. It can open as well and cause an infection. This is what we are trying to avoid.

 

Since Tobias arrived at the hospital, the doctors have been trying to get as much information about him as possible. His medication was altered, which Tobias did not like. The doctor decided to stop the stimulus, which I did not like. Every change to his meds, every change at all causes Tobias stress and his vitals goes all over the board. Tyler reports that his heat rate today (Sunday December 12th) swings between 80 and 110. That is ok for now, and much better than in the past two days.

 

Emily will report of her day with Tobias (yesterday) in a separate post. I am proud that we are working together on this as a family. It is a lot on one person, but durable with the strength of many. Our goal for the upcoming week is to have Tobias cared for, no pressure sores, strengthening his mental health and moving his joints as much as possible until he gets regular therapies again.

I placed his care and life a long time ago into the hands of God. There is only so much we can do ourselves. I understand that life can be rocky at times. I understand that we learn and become stronger and very likely kinder to others or more understanding of the life of others.  I have climbed a few mountains in my lifetime, but nothing compared to this mountain. Watching a child going through so much is an experience I was hoping not to have. Nevertheless, we are not climbing alone, we are not carrying Tobias up the mountain by ourselves. It does feel like it to be honest, but then, on the way, we discover miracles which make us realize that that there is more than we can see with our eyes. We are grateful for all prayers on behalf of Tobias and us, we are grateful for the kind gestures we have received, well wishes, hugs and so on. Thanks for walking this path, with us, and thank you for showing Tobias empathy and care.

 

Since English in not my first language, forgive my imperfect writing. Hope over fear.

 

With love,

 

Katja and Family