8/29/2020
***Warning: At the end of this post is a photo of my cut open skull. If that makes you queasy, don’t look.
Morning of Surgery
It’s been a while since I last posted… That’s mostly due to a challenging recovery from the surgery. I’ll get into more details later. My brain surgery was on August 6th at the U of U Hospital in Salt Lake City. We decided to do the surgery because I was struggling to get off of the steroid and my body was deteriorating from extended use of the steroid. A few days before my surgery, my grandpa gave me a priesthood blessing that provided me and Kim with a lot of peace. I sure love the priesthood and its power. Unfortunately, Kim was unable to spend any time with me in the hospital due to COVID-19. Personally, I think it’s stupid. If I was 17, Kim would have been allowed in. Oh well, we deal with what we are faced with. Kim dropped me off early in the morning around 6:00 am which was really hard for me. Since we had to leave so early, I packed my back the night before!
It was rather hard to walk away from my wife knowing what I was walking in to, but we know God provides strength when we lack. So, we moved forward in faith. After registering for the surgery, I was taken upstairs and put in a room to change into my hospital outfit where they would do all of the pre-surgery conversations and checks. Unfortunately, I had to take off all my undergarments, which makes things rather uncomfortable. I was also told that the Blood Type test I received on the Monday just prior to surgery was no longer valid and would need that taken again, so they drew more blood.
One great thing was that the Resident MA helping with the surgery was the same one that helped with my first brain surgery and my spine surgery. He’s really nice and I was happy to see he was helping. Kim was able to jump on the phone with me at this point and listen to the conversation with him and Dr. Jensen.
The Post Surgery Nightmare
Before long, it was go time. They wheeled me off to the OR. Amazingly, I don’t remember ever entering the OR. They must have given me something in transit that put me to sleep because I don’t remember ever making it to the OR. The next thing I remember was waking up in the recovery room. And boy was recovery challenging. The nurses I had in the ICU were terrible. I had two nurses, Shelby and John. I’m undecided as to which one was worse. Both of them seemed disinterested in helping me. Prior to my surgery I had turned my phone off. Kim tried calling my phone, but since it was off, she was unable to get through. She had to call the ICU desk several times before they would put her through to me. And apparently they weren’t very nice when they talked to her. John, who was my nurse came into my room with his phone and he seemed rather irritated. He told me my wife had called 3 times trying to talk to me, put his phone on my chest and walked off. I was able to talk to Kim for a little bit, but it’s just not the same as her being in the room. I eventually asked someone to get my phone out of my bag (which wasn’t even in my room, so I had to ask someone to go and get my stuff). Here are some post surgery photos…
I pretty much look beat up. So John eventually left and Shelby took over for the night shift. The pain was fairly intense and around 11:15 pm I told Shelby I was in pain and needed some meds. She just told me that she couldn’t give me anything for 45 minutes. I told her that I couldn’t wait 45 minutes. Kim told me to ask for ice or morphine. When I asked for ice, she told me that sometimes they want the blood to continue flowing to the surgical site. Uh… Okay. What if this isn’t one of those times? I then asked about morphine and she actually laughed at me. I told her I didn’t appreciate being laughed at and that I’m just a patient trying to come up with ideas. She told me I hadn’t been prescribed morphine and then she left. She demonstrated no empathy and no real desire to help me. I told Kim what happened and she called and talked to the charge nurse. Eventually a couple of individuals came in an started talking to me. They recommended…you guessed it…an ice pack, morphine pills, and IV Tylenol. Shelby eventually brought me an ice pack and basically threw it on my lap and walked off. I don’t think she was happy with me, but the IV Tylenol was the best thing I received for my pain. More on that in a minute…
Aroun 3:00 am I was taken by another nurse to get an MRI done. He repeatedly asked me if I needed anything, how I was doing, etc. My nurses never asked any of those questions. In the middle of the night I noticed blood all over my blankets and pillows. The arterial IV they had given me was leaking blood all over.
Blood was all over my bedding, blankets, pillows, hospital gown, body… I told Shelby about it and she did try to fix it but didn’t do a very good job. Anyway… I managed to survive the night and the IV Tylenol helped with the pain a ton! John came back in the morning to take back over. I over heard him being debriefed by Shelby. A comment was made that only one Tylenol IV was ordered because of how expensive it was. Uh… excuse me? Who’s paying for all this crap? If it helps me with pain, then it should still be an option. Anyway, Shelby left. At one point, I called for the nurse and, no joke, I watched John walk right past my room and down a long hallway without acknowledging my call. Several minutes later, a different nurse came in to help. She was great. She left a note for John about my arterial IV still leaking blood. When John finally came in, I showed him my IV and he said he would fix it and then he left. Huh? Several hours later, occupational therapy came in to work with me. As we were walking down the hallway, thy noticed my IV and took me right back to my room and got John to fix it. It took OT saying something for him to fix it. While he was taking it out he told me that he was bummed I was leaving that day to go to a different area of the hospital because I was “his easy patient”. He then went on to tell me that his new patient was coming from the OR and he didn’t know what he was getting. Uh… I came from the OR. I guess he has no empathy for anyone and just wants “easy” patients that he can ignore. Not cool. I was very unimpressed. Things went great with OT and I was able to leave the ICU and go to another area of the hospital.
Finally Moved from NICU
The nurses and CNA’s I had in the new area were night and day! And I was much more comfortable there. The CNA’s were great! Confession time… So after surgery, my left hand wasn’t functioning like normal. It still isn’t today actually…which is why this post has taken so long to get to And the left side of my mouth wasn’t working. It still isn’t working well today… Back to the confession. When in the hospital, you have to pee in a portable urinal so they can track your output. You also have to ask for a CNA or Nurse to watch you walk to the bathroom. Well, while I was peeing in the urinal, I made the mistake of using my left hand to help and…well…I ended up peeing all over the bathroom floor and my clothes. I then had to walk out of the bathroom and tell these two CNA’s what I had done. Talk about embarrassing. Anyway, they were great about it and actually thanked me for saying something because a lot of patients I guess won’t say anything and they’ll sit in their own filth/pee for hours. So that was fun. Oh second confession, I spilled urine from the urinal on my bed while in the ICU hahaha But of course I’m not going to say anything to Shelby or John since they clearly didn’t care about helping me. Anyway, I learned to not trust my left hand at all. I spent one night in the Acute Neuro Care Unit and was able to go home on Saturday. Hallelujah! I was packing my bag when the residents came in and brought up going home. They could tell I was ready. So, I told Kim, who headed up north. My pain on day 2 was basically 0. I was off pain meds. Night and Day from the first day. The pain on the first day was miserable. But day 2 was great.
Homeward Bound
Kim eventually showed up and we headed home! On the way home, she treated me to Crumbl Cookies! Her favorite part? Seeing the mess on my face as I tried to eat while dealing with a half numb face hahah
I have developed a bit of a Crumbl Cookie addiction, but have successfully stayed away from them for a while now!
The surgeon said that what they removed from my brain was 100% necrotic tissue, so a surgery would have been needed at some point and it was a good thing we did the surgery when we did. That was great news. The MRI I had showed no signs of a stroke or any indication as to why I was experiencing weakness in my hand and face. They expected full recovery in a few weeks. It has been 3.5 weeks now and I still struggle with weakness and limited use in both my hand an my face. Things have slightly improved, but I’m far from where I was. Typing up this post has been a challenge to say the least lol
That being said, I have been off the steroids for a week now, no signs of seizures, my face has slimmed down, my hunger has improved. So I’m seeing improvements in some areas since the surgery, but struggling with basic day to day stuff like eating and anything that requires the use of my left hand. I’ll get there though. I have also struggled to sleep well a night, which has been difficult. I received a priesthood blessing last night and again, it provided me with lot of peace.
I have had one infusion since the surgery and it went really well. In 1.5 weeks, I will have scans of my body and a meeting with my oncologist along with another infusion. We will see what the scans show!
I’m grateful for all of the love and support I’v received from so many people and I’m grateful to have the gospel in my life and to have a relationship with my Father in Heaven and my Savior, Jesus Christ. I know They live. Onward and Upward!
Here are photos of the incision site, along with a photo of my open skull. If that sort of thing makes you queasy, then I wouldn’t scroll down too far!
#FaithOverFear
