FYI: This is a long post and is not an update, but instead, my perspective on my hospital stay. I think Fay covered it well from an outside perspective but I would like to cover it from a patient's view. REMINDER: The plan was to implant electrodes on my brain, remove me from my seizure meds, induce a seizure, then remove the tumor and seizure focus site(s) one week later. That was the plan. Click to enlarge any pictures..
Day 1: I remember everything up to "goodbye Fay". The next thing I remember is throwing up from the anesthesia. I recall telling the anesthesiologist that I have not had issues in the past - I spoke too soon. I faded in and out of consciousness. Really, Day 1 is a blur.
Day 2: I recall very little except the pain part. I remember waking up in extreme pain. I was screaming, "get this thing out of my head!". It was the most horrendous pain imaginable. Despite all the discussing, planning and scheduling that was done for this whole ordeal, I wanted the electrodes out of my fucking brain or I wanted to die.
I had gathered great attention in my room as my pain level was spiraling out of control. Thankfully, my wife was there to handle the situation. I was in too much pain to tell what was going on. I was only aware of the pain and faces of everyone in the room. Next thing I know, I wake up in a much better mood and WAY less pain. I was transferred into my own room on the Epilepsy Ward, I ate my first solid foods and I was feeling relatively good. Finally, the pain was under control. Looking back this would be my worst day in the hospital by FAR.
Day 3: Again Day 3 was a blur - actually I don't remember it at all. Another surgery....an emergency surgery that I would know nothing about until later on day 4.
Day 4: The first thing I recall was waking up, maybe mid day. I wasn't aware that I had had another surgery. Apparently I had a few late night seizures on Day 3. I was later told by Fay that I had had a CT scan because my condition had been declining. The scan showed that I had bleeding and it was causing pressure on my brain. This pressure was causing my symptoms. I remember earlier in the day the doctors coming in from time to time to discuss how I was doing and performing some tests but, they failed to mention I had had another brain surgery! AND have another scar.
Day 5: This was the day that they ran tests while they stimulated areas of my brain using the electrodes. The day they were trying to gather information in order to map my surgery. I only remember the set-up and maybe about the first 30 minutes. I'm guessing it was the large amount of Ativan they were giving me via IV as the reason I didn't recall the entire test. They decided to give me Ativan because there was so much activity (brain noise) that it was making it difficult to record the info they needed.
They had me read while they stimulated different areas of my brain. I WISH I could remember all of the tests and explain it to everyone. Actually, I wish I had the forethought to video it. It was an amazing process. At one point, they had me repeat phrases and one was, "beer and pizza" and I could actually taste it as I said it. The taste was so real - it was crazy. Like I was sitting down at a pizza parlor. Fay was allowed to watch the entire testing. She said she wanted to tell them to stop and that it was enough. She said it was very long and very intense. She felt like they were torturing me and kept telling me to wake up. It lasted nearly 4 hours.
Day 6 & 7: Are the only days I truly recall vividly. My pain was pretty well manged with my medication schedule. These were mostly rest days. I remember Julie and Chris coming by for a visit with some food. My Dad, Aunt and Uncle dropped by. I also remember, by this point, that I was getting extremely frustrated by the straps on my arms. Not only did I have restraints on my wrists but I also had a chest shirt (straight jacket) that was totally limiting my movement. I just wanted to move so badly.... Just for a minute to lay on my stomach, turn on my side, sit in a chair. Anything other than the position I was in. I wasn't allowed!!!
Rhonda and Tom brought Hayden for a visit on Sunday! We had a nice lunch together. I was surprised at how well he did. Even though three nurses worked on making me look kid friendly, I know I looked crazy with all my bandages.
Day 8: The day of the third brain surgery. The day of the removal the electrodes, the tumor and the seizure focus sight. I was trying to stay calm as I waited. I was scheduled to be the first surgery of the day but, it got pushed back. The waiting was awful.
This time I remember being taken into the surgery room where my brain was about to be opened. They moved me from the hospital bed to the operating table. I remember thinking that this was a lot smaller table than I expected. They strapped me down and I remember A LOT of people moving and talking. An oxygen mask was put on my face and I was told to relax and breathe deeply. That's its...that's all I recall. I don't think it is standard process to be put to sleep in the actual Operating Room so this was a first experience for me. Or maybe it is standard and this time I just remembered it. Again, after that I was in the ICU for the day so I don't really remember much.
Day 9: This was the day I was officially removed from my "straight jacket" and wrist restraints! The doctors didn't feel that I was a seizure risk anymore. I was also in a shared (tiny!) room! Ugh! Physical therapy had just started. I remember walking up and down the hall in extreme pain but, I was actually up and walking! Note: One day after brain surgery! I also had a new baseline MRI as well.
I had a visit from Dr. Chang and my most important question was, "how did the surgery go and when can I get the hell out of here!?"
I put huge effort into completing the 4 tasks on the "Discharge Checklist". I wanted the hell out of the hospital.
Day 10: I went home one day earlier than expected since I was up and walking and my pain was mostly under control. Recovery at home would be more difficult and longer than I have experienced, but at least I'd be at home.
1. During the time in the hospital I was asked the following questions either hourly or every other hour. Regardless of the hour and regardless if I was asleep. Do you know where you are? What reason? The date? Who's the President? What's your birthday?, etc. - one time answering with the question "Do you know why you are here? I answered "Crani-fucking-otomy"
2. The neurological tests were completed every few hours as well. Even waking me up if I was sleeping. Those were the most frustrating. They would ask me to use my right hand even though I could barley move my right arm.
3. Drugs: They gave me a lot of them: Anethesia, percoset, Ativan, Keppra and on and on. The Ativan via IV had an immediate effect that would "calm" my brain down. It also put me in a comatose state and make me excessively tired. So tired that I don't remember ever getting it. Fay and Rhonda have a lot of stuff to hold over me for the Anethesia and the times when I was really out of it. I guess I was saying some crazy stuff. Unfortunately, Fay found this part really scary. I was also taking Percosot every 4 hours for the pain.
3. Fenabarbatyl, well that was a different story. They would only allow me to take so much Percoset in a 24 hour period. So in between this time when I had to be held over I would take an IV of fentalyne to hold me over. This stuff was strong, too strong in a way. I don't recall this drug from having prior surgeries. It would kick in immediately and would make me start hallucinating about 10 minutes later. I clearly remember in my MRI on Day 9 seeing rabbits eating carrots in a field and rainbows overhead. Note: The rabbits were standing like humans and talking!
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The reason I have done so well, the only reason, is the support of family and friends. If I didn't have that I wouldn't have pushed so hard to recover. Now I've completed Radiation, physical, speech and occupational therapy sessions and I'm up and running again.
I'll be going back to work on July 1st, and aside from the Chemo for the next 12 months I'm 99% recovered! I can't thank you all enough for the positive impact you have had on my recovery and to the support you have provided to my family.
THANK YOU
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