I don't know exactly when I went into the hospital for the first time but I do remember that it was in March of 2020.
For those of you who don't know, I was born three months premature back in 1984. I was born with a medical condition called hydrocephalus (water on the brain). It meant that my body was unable to drain fluid off of my brain naturally.
To combat this, the doctors installed a pump on my brain that was connected to a tube that went into my stomach and released the excess brain fluid there. Everything worked like a charm. Other than the doctors having to extend my shunt tubing when I was 13, I had no other issues.
That is, until I was 35 back in 2020. I always knew that one day my shunt could fail. It finally did fail in 2020 due to the plastic becoming too old. I never expected all of these problems but I am lucky and blessed to have the support of my family and friends and I know that things could be much worse.
Back in March of 2020, I was hospitalized in Pamplona due to my shunt failure. I had a total of six brsurgeries;ies, first they tried to repair my original shunt. They couldn't because it was too old. I ended up with facial paralysis and damage to my fourth ventricle in my brain. This was due to the increased brain pressure. Your fourth ventricle controls your speech and balance. Hence my current issues. The facial paralysis also affected my speech.
I was put on a liquid/pureed diet due to the facial paralysis. I also had to have thickener added to my liquids. I still have to have thickener to prevent the liquid from going directly to my lungs. I lost a ton of weight on that liquid diet. Luckily, now I can eat any solid food that I want.
In 2023,the doctors in Pamplona were out of ideas. After enduring six brain surgeries I was really no better. It was then that I found out about a wonderful doctor named Dr Poca in Barcelona. I ended up getting transferred there.
I ended up having six more brain surgeries. By this point, I had two shunts. One shunt is dedicated only to controlling the fourth ventricle. The issue that I was having previously was that one shunt would work and the other would not. Dr Poca gave me two shunts that can be adjusted via magnets. Thereby, avoiding another brain surgery only to adjust the pressure. Additionally, the shunts that she put in have a technology that allows them to talk with and synchronize to each other. Avoiding the issue I was having before of one of the shunts working and the other not. In addition to all of this, Dr Poca found and removed an old piece of shunt tubing from my stomach lining which was causing me to vomit constantly and lose weight.
This has been a long, hard road to recovery which I never expected. I am forever grateful to Jenny and Eliana Valentina for always being there for me. In addition my parents, extended family and friends have all been great.
Due to the damage to my fourth ventricle, I will never again be able to walk totally unassisted. However, being able to transition to using a cane, or worst case scenario, a traditional walker will have me over the moon.
In addition to everything else, the increased brain pressure damaged the optic nerves in my eyes. I have needed glasses or contacts my whole life. However, now due to one of my pupils in my eye being twisted and off centered due to the increased brain pressure, I can no longer drive or wear contacts. I don't miss driving though!
The doctors injected Botox into my eye to try to straighten it. However, it only worked temporarily. Now the doctors tell me that they can do an additional surgery to straighten my pupil, but it will be only cosmetic, it won't improve my vision. So, I am thinking that I won't bother with it. Having the twisted pupil does affect my balance but over the past few years my body has learned how to deal with it. My vision is bad, but OK with glasses. My balance is slowly coming along. It is annoying having bad vision. However, I am thankful not to be blind.
I wouldn't wish this on my worst enemy. However, I consider myself lucky for the shape that I am in. Things could be much worse. I am lucky that I don't have a degenerative condition. With time and effort I will only continue to improve. I am currently back home in Texas until the end of August. I am walking daily with my mom up at the local basketball court, using my walker.
Every afternoon, I go to the rehab gym in Nocona, Texas for a 2 hour workout with my dad, we alternate between leg days and arm days. Additionally, I am still practicing my speech daily with my AI apps and I am still teaching English online to 3 of my students from Spain. Once a week, I have a session online with a memory specialist back in Spain to work on my short term memory.
So I have been staying busy! This has been a long, hard journey for the last six years and counting. However, I consider myself a lucky guy. I wouldn't change anything even if I could. If you are reading this, I love you and I am thankful for your support.
I have what amounts to a traumatic brain injury. The doctors tell me that it will never fully heal. However, with time they expect the undamaged areas of my brain to take over for the damaged ones I am seeing slow, small but steady progress. I can handle having limited mobility or speech issues. However, having both makes life difficult. I would love to get to the point where I have either speech or limited mobility, not both things. Obviously, having neither of them would be ideal.
I want to be employable again. However, due to my mobility issues, an at home job would be best currently. Due to my speech issues, having a job where I don't have to talk to anyone is ideal. So far I am not having any luck with my job search due to my requirements.
Jenny and Eliana Valentina have both been amazing. I couldn't ask for better support. I have been affected by all of these health problems for the entirety of Eliana's life. Sadly, she doesn't know me any other way. At least Jenny got to know me before all of this happened. I want to fully be a part of Eliana 's life without having to worry about my limited mobility or speech issues. She worries about me a lot and she is always willing to help me out. However, I want her to have a normal childhood, not to worry about her dad.
Me getting as close to a normal life as I can will allow Jenny and Eliana to return to normal life too. That means any improvement that I can make will not only benefit me, but them also. So that is basically my update and my goals.
Til next time, Tyler
