Friday, July 26, 2024
Ten Years with Jenny
Friday, July 19, 2024
Daily Life
Friday, July 12, 2024
Modern Life
Wednesday, July 10, 2024
The State of the Titanic Wreckage
Monday, July 08, 2024
Eliana Valentina
Sunday, July 07, 2024
Summer Fun
Saturday, July 06, 2024
A more detailed look at my progress
Friday, July 05, 2024
The Supreme Court Decision
Tuesday, July 02, 2024
Common Knowledge
Monday, July 01, 2024
Unavoidable Things
Sunday, June 30, 2024
Travel Mishaps
Friday, June 28, 2024
Thanks Again
Thursday, June 27, 2024
The Memory Palace
Wednesday, June 26, 2024
The Magic of the Human Body
Tuesday, June 25, 2024
Average Life Expectancy
Monday, June 24, 2024
The upsides and downsides of living in Spain
Sunday, June 23, 2024
Thinking about my life
Saturday, June 22, 2024
My childhood dream job
Sunday, June 16, 2024
Father's Day in the US
My thoughts on marriage
Friday, June 14, 2024
My Health - Looking into the future
Wednesday, June 12, 2024
Some more thoughts on the eventual end of my life
Monday, June 10, 2024
Jenny and Eliana
Sunday, June 09, 2024
Who I am thankful for
Friday, June 07, 2024
The story behind my scars
Thursday, June 06, 2024
My Politics
Wednesday, June 05, 2024
When I die - my final wishes
Tuesday, May 21, 2024
My new YouTube channel
Monday, May 20, 2024
My new podcast
Tuesday, May 14, 2024
That time I broke my hand
Wednesday, May 08, 2024
How we are choosing to raise our daughter
Friday, May 03, 2024
Day to Day Life
Saturday, April 27, 2024
Story Time with Eliana
Saturday, April 20, 2024
Something to be thankful for
Thursday, April 18, 2024
My anniversary of being out of the hospital
Tuesday, April 09, 2024
Thoughts about each country I have lived in
Monday, April 08, 2024
Random Thoughts
Thursday, April 04, 2024
A big thank you
Tuesday, April 02, 2024
Current life goals
Wednesday, March 27, 2024
General Family Update
Saturday, March 23, 2024
General health update
Tuesday, March 05, 2024
March update
Friday, February 09, 2024
The doctors will operate on Monday
Saturday, December 09, 2023
I made it home
Thursday, March 16, 2023
general update
Friday, January 07, 2022
Fatherhood
Monday, January 03, 2022
2022
Now that we are well into the new year I figured I would write something. They (the doctors) decided to cancel my brain surgery out of an abundance of caution because they felt while I was ¨good¨ it was too risky to try it. I am frustrated because I feel like I will just go bad again with these two shunts but the doctors have promised if I do go bad again then they will operate. Who knows? This last fix that they did could actually last forever and I won't ever need to have another surgery (but I doubt it). The good news was that I got to spend Eliana´s birthday, my birthday, Christmas and New Years Eve with my mom and Jenny and the baby and all our family here.
It has been a difficult year for me. 2021 was not great but Eliana is growing like a weed and she is perfect and healthy so I am thankful for that. I have had a rough couple of years but I am feeling positive about 2022 and I hope it turns out better than 2021 did. I am hoping this is the year that we can finally put the pandemic in the rear view mirror globally. Luckily, Eliana is too young to remember any of this terrible stuff. We have been extremely lucky to stay healthy and not lose anyone close to us to this terrible disease. You never know when your time will be up so you gotta soak up every second to the fullest. I truly am one of the luckiest men on the planet and I am doing much better than some other people. Here's to hoping that 2022 will be the best yet.
Wednesday, December 15, 2021
My (hopefully) last operation explained
Many of you have been asking so I thought I would take this time to dive into a little more detail about my condition and my upcoming surgery. So I was born with hydrocephalus, just bad luck really. I was born 3 months too early and not ready for the world yet. It is Greek for water on the brain. I had excess fluid on my brain and it was causing pressure on my brain. However, I was lucky. I was born in 1984 and they knew about my condition and how to fix it. Had I been born any earlier and they probably would not have had the technology or knowledge to know how to help me.
The doctors decided to implant a VP shunt on my brain basically a one way check valve that was gravity fed that drained the excess brain fluid via a tube into my stomach lining to be absorbed. This setup worked fine for me (after 3 different shunts from the doctors!) until I was 13 years old and the tube broke. I started having headaches and vomiting and the pressure was increasing on my brain I knew something was wrong! The doctors went in and gave me another tube and all was well until I was 35 years old.รง
My original shunt from 1984 was designed to work for 10-15 years but it lasted me until 2020. In June of 2020 this whole saga started. I won't rehash everything but basically the old shunt broke and they tried to reuse the one I had but were unable too.
I have had 4 operations since June of 2020, and they decided to implant two programmable vp shunts to control the four ventricles in my brain. So I have one shunt and tube controlling three ventricles and another tube and shunt for the 4th ventricle.
The problem (in addition to my lazy eye) is that the shunts and ventricles are not playing nice. They are not talking to each other as they should and they are getting out of whack and everytime they do this I have to go back into the hospital and the doctors have to adjust the pressure of my shunts (luckily with these new shunts they can adjust the pressure via magnets and don't have to operate every time)
But for two years now they have not been able to get the pressure right and get me fixed on a permanent basis. It is extremely hard to work or have a normal quality of life when you are living with this uncertainty. I never know how good I will be or for how long. Every time I go bad again, I have to go back into the hospital and my speech and walking are affected. My whole life gets turned upside down.
So my doctors here in Spain finally decided to operate. Their plan was to remove one shunt, put in a stent and allow the four ventricles to talk to each other again. Basically restoring me to how I was before June of 2020. I was very happy that they had finally found an option to (hopefully) get me back to normal! Of course any brain surgery is scary, I was worried about losing my memories or my ability to speak etc. But it was (and is) really the only option left.
However, I found out today that they are delaying my operation. I am ¨good¨ since my last hospitalization/adjustment and they don't want to mess with anything if they don't have to. But I have been here before. I will probably be good for a month or so and then get all out of whack. Of course it is possible that this time they really did find the correct pressure and fix me for good. The good news is that I can spend the holidays with my family and not in the hospital. They have told me if I go bad again, then they will operate so at least I know that I do not have to deal with this forever.
I know this was quite long but hopefully if you made it this far you have a better understanding of my condition and what I have been going through. I tried to avoid technical language hopefully I did ok.
P.S. Even though I have had some struggles (had to go back to rehab and speech therapy) I am doing much better than some others out there and I consider myself the luckiest man alive to be alive and to get to hold my little girl every day and love on my wife and my family and friends. I couldn't do this without yall. Thank you.
Take care, Tyler