Fight With Joany

My update after the second surgery is a bit more complicated then I wish I could have given you. The surgery went well and was highly necessary, they gave me 2 bloodtransfusions. However after the surgery it has become clear that what we feared has become reality which means my lumbar spine is instable as well. This means that once again I can only control my eye movements, sit, walk and breathe when my lumbar spine is stabilised and put in a hollow position. Every single thing I have has been objectively measured, with the changing of the position of my spine both when I’m awake (in my bad position versus my good position with traction) versus when I was intubated and under sedation. Meaning that there is absolutely no way I have any control over what happens. The only thing which we don’t understand yet is how it is possible. But we still have time and a very good team full of people who never stop studying and work with their full hearts and spirit. Without them I would have left this earth. I also have compressed veins in my chest which later will have to be decompressed. This week I have to recover, regain strength and lots of tests will follow. No steps will be rushed. Every surgery I have had until now has been worth it and has had the effect it needed to have but given the complexity of the case we needed to take everything one step at a time. Both my surgeon, the entire team and myself make all considerations extremely carefully but where there is no choice, we need to do what is necessary and we will all make the best out of it. My body has always been complicated, weird and extreme. However it is also incredibly resilient, despite everything strong and my spirit is high, positive and I will never give up. Therefor I believe in my power and the power and ability of my body to recover.

The first surgery consisted of a tethered cord release and fusion with traction from my skull until T2. It took 14 hours with a bloodtransfusion. The results of the surgery until now:

How I got to this point is a story of years, one which I will one day tell. For now I’ll try to explain the gist of it.

Dear people, thank you all very much for all your support and compassion. It means a lot to us. I can't describe to you what the past few days have been like. Something happens and you deal with it and then move on. Joany became sicker and sicker and every time we tried to make her life as pleasant as possible and find a solution. This search and powerlessness is a story in itself. The trip to Barcelona was our last hope. We have heard that they cannot diagnose here that they would be too weak to return home. It was also exciting to think that we rationally saw that we would have a good chance here. We did not expect how things would proceed, but neither did the doctor and his team expect this. I never underestimated the seriousness of the situation, but I never let it dominate, but here there was no escaping it. In the ICU she tries to stabilize her for days with her cervical collar in her hand so that she does not suffocate. 24/7 next to her bed to prevent them from moving due to minimal touching. And the last day/night before the operation the hours passed and Joany asking every so often what time it was and then saying: Do you think we'll make it? And after 3:00 she said: Then we'll make it!! I knew that. Waking up after the operation and her legs not being able to move and her left arm not being right, that's another story in itself. Here too you are not prepared. You are so happy that she is still alive, but then the ground is literally and figuratively pulled out from under you. Then Joan's optimism comes around the corner again and she says: I can feel my legs so it will be fine, I will learn to walk again. My arm, that's a different story, I don't know if it will turn out okay. Now we are almost ready for the 2nd operation that will hopefully get her sitting and walking again. Given the poor condition she is in and what we can expect, it will not be down to optimism and perseverance. Joany always sees the sun shining and we as a family will always support her and with the help of all of you this is possible. Maybe a bit of a long story, but I left out a lot. The candle is lit and we go to the operating room with confidence. 🙏

Dear and dear people,I'm not really good at words, but now I've been asked to say something.First of all, I must express my deepest respect and admiration for my wife and daughter. What they have done and experienced is indescribable and inhumane. They made all doctor and hospital visits together and sometimes under the supervision of a doctor, where help was often essential. As a patient with an unstable cervical spine, you are not taken seriously by almost any doctor, but are considered crazy.However, we live in the big human world and all bills have to be paid. That's actually the part I try to arrange as much as possible. But we certainly wouldn't have made it without your help! I can't think of words that can express my/our gratitude.It has been more than heartwarming to see how many people have supported Joany and us during this period. Especially after many years of living in private quarantine and needing medication against misplaced arrogant and lying.I am very proud of our family and most of my family. We haven't seen each other for a long time, but almost all of them were there. Many thanks and respect!!!❤️❤️❤️Thank you all! Without your help it would never have been possible.We are not there yet, but we will get there.Alone you can do nothing, together you can do everything.

Some images of the last 2 weeks. I feel blessed to be in the right hands and I love that I can be myself, until now my strength has always been used against me. Besides that the next surgery will allow me to sit (which I can now do in only 1 specific spot or with a traction device for several minutes), breathe normally upright, walk and control my eye movements, it will also help me to swallow. We learned that during the first surgery my surgeon had to make some concessions in the placements of the screws because I was in such a bad shape and this is why I’m having these swallowing issues now and can only eat baby portions with everything getting stuck in my throat (I thought I was just too weak😋). However changing the position of my thoracic spine affects everything which hopefully will lead to improvement. Also my left elbow will be checked today because it has been blocked and very painful for a week now. I can stretch my arm to always the same point and it doesn’t go any further which hasn’t shown any improvement. I’m focussing on regaining my strength by getting the rest my body needs and trying real hard to get as much food in as possible. As brutal as it can be I’m also finding joy in the process, there are always new ways to be found and new challenges to focus on. I just want to soak it all in and turn it into something good.

Hello everyone, this is an update from myself♥️