brain surgery

On the road to recovery

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Before I could be discharged from the hospital they needed to make sure that my pain was manageable without heavy narcotics. To be honest I was a little worried about where they would move me to because I had been out wandering the halls of the Neurosciences ward and it was pretty scary out there. The hallways were lined with wheelchairs that belonged to the residents of the floor. Everyday there was an elderly woman parked in the same location regardless of the time. One person had decorated their room with pictures, and another moaned all day. It was all a little depressing. I was also concerned that I would be in a room with elderly men cause that would make me uncomfortable. I had learned at my pre-admission appointment that the ward rooms were co-ed and had been worried about it ever since.

Last day in the hospital
bruises

Fortunately for me I was given a semi-private room with one other woman. She was lovely and I will tell you more about her in another post. When I was moved I walked from one room to another while my husband, youngest and the nurse moved my furniture and belongings. I no longer had anything but band aids and staples attached to me and it was wonderful. I decided it was time to take a shower but I still wasn’t quite 100% sturdy on my feet so my husband was nice enough to help me. It’s pretty humbling as a grown woman to get someone else to help you put on your underwear. Thankfully it was just once but it made me think about how much of my health I take for granted.

Drawing pictures in my hospital room
Drawing pictures in my hospital room

My mom had come to visit and I decided that I was ready to go outside. Neuroscience was on the sixth floor so to get outside we needed to take the elevator. When we got off on the main floor there was a huge lineup for the elevator being that one was out of service and there were only two to begin with. At the end of the line I saw a woman that was about to give birth. Even in my semi-drugged state I realized that she should have been moved to the front of the line. I asked her if she was in labour even though it was clear from her sweaty red face. She said she was going to take the stairs and my mom pointed them out. I was making a small scene telling her and everyone that could hear how rude people could be. I suggested she flag down a porter pushing a patient in a wheelchair because he could probably get her into the service elevator, and about 10 minutes later my mom went up the stairs to make sure that she wasn’t having a baby in the stair well.

The following day I went for a longer walk and tried the stairs for the first time. I made it one flight when my husband looked at me and suggested the elevator. I was still experiencing quite a bit of dizziness because the tumour was removed from the part of the brain that controls balance. I needed a little lie down after our adventure outside, it was a little sad.

My doctor had been in the day before and said that I might be able to go home on August 12th. He also said that he was going to be going Salmon fishing for the day with friends from out of town but if I was ready to go home I should have the nursing staff call him. They did call him and at 8 pm I was released. I was so happy to get out of the hospital and it was time.

My super crusty hair.
My super crusty hair.

We had to stop at the drug store on the way to get my pain prescription. My hair was crusted to my head, it still had iodine and blood in it plus 6 days of dirt. But I couldn’t wash it until I got the staples out. I thought that I would have the worst hair in the store but no, there was a young guy there that had just dyed his hair blue, and his neck, shirt and belly. No one was staring at my dirty hair, band aid on my forehead or train track staples in the back of my head.

When we got home the kids were waiting for us in bed. I was still pretty sensitive to noise, and we talked about making sure not to yell in the same room as mommy. But then the kids asked things like, can we talk? can we play trucks? what if I have a nightmare can I call you? and the rules were tossed out.

After spending 5 night in the hospital I was so happy to sleep in my own bed I made myself right at home.

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Home sweet home

Close Observation

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I have been writing a daily post about my experience as a craniotomy (brain surgery) patient to remove a meningioma (brain tumour) on August 7th. This is the third post. Here is a link to the first and second posts.

August 8th about 24 hours after surgery I was transferred from ICU to a close observation room in the neurosciences wing. Before leaving the ICU I needed to have my central line removed and give up the Ferrari of hospital beds with all of the bells and whistles and move to a wood-paneled station wagon bed with one broken button that had been fixed with duct tape.

Forehead Staples
Last day in the hospital
IV

In Close Observation or the mini ICU there were 4 semi-private rooms. There were two nurses and four patients, so I shared a nurse with another patient. The nursing staff was amazing, what they deal with on a daily basis is incredible. They liked me and I liked them so they kept me in their area from August 8-11.

When I was in the ICU I played the “have you had a stroke game” every two hours (heart rate, blood pressure, smile, shrug shoulders, raise eyebrows, move toes, light in the eyes, and asked questions) and that changed to every four hours in the mini ICU. When I arrived in the mini ICU I had one IV remaining with fluids and the occasional dose of anti-nausea medication. I slept most my first day sitting upright in bed. By the second day I was starting to eat again but it hurt to chew so I started with a liquid diet and worked my way up to solid food. On the third day I got out of bed for the first time since my surgery. I went for a stroll around the hospital ward wearing sunglasses (because it was too bright), two hospital gowns (one forward and one backwards so that I wasn’t flashing my butt) and I carried my catheter bag as a purse. It was the only time that I asked my husband to put down the camera because it was not an image that I wanted to capture, so you are going to have to use your imagination.

The pain was pretty intense and I was on a mixture of narcotics, and IV anti-nausea medication. By the third day I no longer needed the IV or morphine shots which meant that I could be moved to a standard patient room in the ward. I also started feeling like a human again.

FullSizeRenderOn the morning of August 11 I had the 3 staples removed from my forehead. The dressing over the main incision was also staples on, and those staples were removed to reveal a pretty sweet battle scar. My hair was so incredibly crusty yet I knew that I wasn’t able to wash it for 7-10 days (until the rest of the staples were removed). I couldn’t hear very well from my left ear from swelling/iodine and was told that my hearing should improve in 4 weeks.

My parents came to visit when I was able to at least speak and keep my eyes open for short periods of time. My kids came to visit once I was unhooked from everything. I still had an IV in my arm for injections but I wasn’t tied to the bed as I had been. My oldest was scared because I had staples in my forehead from where I was clamped to the table and they couldn’t stop the bleeding. He was concerned before I went in that I was going to turn into Frankenstein, so I can understand his apprehension. My youngest came to visit on the morning that I was moved to the general ward which was perfect timing because at two he is a little difficult to entertain and keep quite. Here we are hanging out waiting for my room to be ready so that I could move out of close observation and into the Neuroscience ward.

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Finally on the road to recovery.

Brain Surgery to ICU

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On August 7th I had a craniotomy to remove a meningioma (brain tumour). This link explains the procedure from a medical perspective. I am sure that the patient craniotomy experience would be different from person to person but this was my mine;

  • an IV in my right arm which is where they injected the anesthesia
  • a second IV was placed in my opposite arm
  • a central line (another IV) in my neck
  • a catheter in my bladder
  • a breathing tube down my throat
  • sensors were placed in my face to monitor nerve activity and align the MRI image
  • my head was clamped in 3 placed to the operating table (2 along my hair-line in the front and one in the rear)
  • the MRI was aligned with my physical head
  • my skin was cut
  • a loonie sized piece of my skull was removed from behind my left ear
  • the tumour was removed and the point of origin was cauterised
  • a titanium plate that looks like a snowflake was screwed to my head and my skin stapled back together with 14 staples
  • a dressing was placed over the incision with 3 staples
  • when the clamps were removed my forehead started to bleed, after 15 minutes of pressure the surgeon couldn’t get the wound to stop bleeding and placed 3 staples to stop the bleeding

I was wheeled to the operating room just after 8 am, surgery was completed by 1:15 pm and I was transferred to the recovery room and at some point the breathing tube was removed. I woke up in the ICU around 2pm and man did I have a headache.

What I remember from my ICU stay was;

  • My first thought was “I am alive”
  • I had a private nurse her name was Debbi and she was lovely
  • In addition to all of the tubes mentioned above I also had oxygen tubes, a clip on my ear and a pile of wires
  • I wore electric compression stockings which filled up with air and massaged my legs, I loved them
  • throwing up within hours of brain surgery was the worst
  • my chest felt like someone was sitting on me
  • every 2 hours I had my blood pressure taken, had to squeeze the nurses fingers, wiggle my toes, raise my eyebrows, smile, shrug my shoulders, have a light flashed in my eyes, and answer questions
  • all of my pain and anti-nausea medication was given intravenously
  • the beds were cool but I hated them. The bed was similar to a massage chair where there was movement under the surface. It would have been lovely had I not just had my brain messed with, so they turned off the movement feature.
  • I had blood taken a few times from one of the IV lines
  • my eyes were crusted shut for a while
  • sleeping connected to so much stuff and being woken every 2 hours meant that I didn’t get much sleep

These are some of the pictures from my 24 hours in the ICU. It gives an idea of the shape I was in. There were 10 beds in the ICU and I was the least sick person. I can’t even imagine how the other people were feeling because I wasn’t doing too hot.

The most important thing is that Timmy was removed in his entirety and that he wasn’t cancer. The operation was a complete success.

Pre-Operation…Brain Surgery

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The day before surgery I got a call to let me know that my craniotomy was scheduled for 8am the following day. I had never felt so nervous in my life as I did the night before and morning of surgery. I have never been hospitalized for an illness so this was new territory for me.

The night before surgery I went out for dinner with my husband even though I didn’t have much of an appetite. I knew that it might be days before I could eat solid foods again so we went to one of my favourite restaurants. After dinner I read the kids a couple of stories and tucked them into bed. It was a difficult thing to do knowing that I wouldn’t see them again before surgery. My husband and I went for a walk because I knew that I wasn’t going to be able to walk for days. I washed my hair (because I wouldn’t be able to wash it again for 10 days), cleaned my body with surgical soap and went to bed.

IMG_20150807_065241In the morning I showered again with surgical soap, got dressed and headed to the hospital. We arrived at 2 minutes to six and were greeted by an administrative clerk that didn’t like her job. She gave us a form and sent us to the next waiting area, where we handed in the form and waited in the next waiting area. I was called into an area with 6 beds, and told to get dressed into the hospital gown and hop into bed. The nurse asked me a pile of questions, checked my temperature, blood pressure and tried to start an IV. She promised that she would only try once to start an IV. She wasn’t able to find a vein, I am sure that my veins were scared and hiding. She called my husband in so that he could wait with me. About 7:15 a porter arrived to take me upstairs. My husband walked me to the elevator, gave me a high-five and the last thing I saw was this.

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I was taken to operating room waiting area with the same patients I got ready with downstairs and we were lined up side by side. While I was lying there my first visitor was the anesthesiologist, next was a nurse, followed my neurosurgeon, and then my surgeon’s resident. The first patient was wheeled away. The woman beside me was picked up by a porter and we wished each other well. Then it was my turn. My porter’s name was Pat and she had a similar surgery to mine 15 years prior. I can’t even tell you how important it was to hear her story as she wheeled my down the hall.

It was a couple of minutes after 8am when I arrived in the operating room and shifted from the gurney to the operating table. I heard someone mention something about my position and head clamping. I was introduced to four nurses, a second anesthesiologist, a second neurosurgeon (who I can only assume was the one cutting as she was wearing a full face shield). There were at least 9 people in the room but let me tell you it was like the set of Grey’s Anatomy in there. Everyone that I saw was attractive and the anesthesiologist’s were hot. I had an anesthesiologist on either side of me, one with oxygen the other putting the anesthetic into the IV and the view from where I was lying was good. Not a bad sight to drift off to at all.

Closed for renovations

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brain cupcakesI know that my brain is a lovely place. I do in fact spend most of my time in there. But you my friend are about to get evicted, so pack your bags, and don’t forget a thing because this is a one way trip. You are not welcome to return, or bring your tumour friends for a visit. This tumour hotel is closed for business. My brain may in fact become a radio active hot bed so it’s best to stay away. Bon voyage, adios, arrivederci, au revoir I never want to see you again.

Renovations will be underway tomorrow. I expect that everything will be on schedule and will go according to plan because I have some pretty awesome project managers on the crew. I expect to have a bit of a headache from all of the jack hammering, but it will be well worth it in the end.  I am already planning a celebration to show off my brand new brain. Look at these cute brain cupcakes I found on Pinterest. They seem perfect for a brain tumour eviction party.

I have been advised that I will most likely need a blood transfusion tomorrow as part of my surgery as the tumour has intersected two major blood vessels. So if you are feeling like you are overflowing with blood please consider donating what you don’t need to Canadian Blood Services (or whatever country you are from). I won’t get your blood but someone else in need will. As they say “It’s in you to give”. Here is a link for my Canadian friends so that you can find a place to give in your area. https://www.blood.ca/donate

Thank you, see you soon.

Reading the Signs Part 2

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Last week I was driving the kids between activities and I was starting to feel like the fraying thread that I am holding onto so tightly was about to snap. I was thinking about surgery, being in the hospital, and all of the not so fun stuff that accompanies a brain tumour removal. I remember thinking that today’s the day that I might lose my shit composure. And then I saw her standing in the bus shelter all by herself wearing a white shirt with large black letters that read “YOU GOT THIS”. I started laughing and couldn’t stop. My 6 year old was asking what was so funny and I couldn’t even explain it to him. Thank you random stranger for picking out such a loud shirt and acting like a billboard. I needed that so much more than you will ever know.

Reading the Signs

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"Give it to me straight, Doc - Is there gonna be more paperwork?!"
“Give it to me straight, Doc – Is there gonna be more paperwork?!”

Last Friday I spend the morning at the hospital. It wasn’t much fun. As with any sort of visit to a health care center there was a form to fill in. Once again it was filled with very random questions which did not pertain to my issue or lifestyle. I felt as though I aged considerably as I answered questions about dementia, incontinence, and the dependence on others to get dressed/bathed.  One of the few questions I did answer yes to was “are you responsible for the case of another person”, yes two other people. One that I need to dress/bathe and at 2 years old he occasionally wets the bed. The other 2 questions that I answered yes to were “have you been anxious in the last 2 weeks” and “are you having trouble sleeping”, obviously I am having my skull cut open in a week.

The first person I met with was the pharmacist. My list of current drugs includes over the counter headache medication, and the occasional Tums. The visit lasted about 5 minutes yet I was scheduled in for an hour. So we waited 45 minutes for the next appointment. When it was finally my turn to see the anesthesiologist he said “this is a big procedure”. Yes thanks for the news flash. All I wanted to know was how soon could he knock me out. I don’t want to feel anything, I don’t want to see anything. If he could come to my house the night before that would be great. He inspected my neck and throat to make sure that I could be incubated easily, and apparently I pass. He kept saying “you should be ok”, how comforting.

Next up was the nurse and she was great. She reminded me of my Nana who was also a RN. She was clearly in charge of the appointment and could answer all of my questions. There were 2 things that have stuck with me that seem very important the first being that I am not allowed to get out of bed for the first two days without assistance, and second is that I shouldn’t pickup the kids or do housework for 4 weeks. The warning to not do housework was the only silver lining for the time I spent at the hospital that day. The rest of it SUCKED.

After playing 50 questions with three people I went for an ECG. It was fast and painless. Next was blood-work, easy peasy. My final stop was a chest x-ray and after a very long wait (due to a scared child ahead of me) I was done. I have come to learn that emotional exhaustion is a real thing. A number of times throughout this process I have found myself so tired I can hardly function. It’s not due to a lack of sleep or physical exertion it’s because I have had a particularity emotional day and I am tired as a result.

monk textingOn the way to pickup our 2 year old I was thinking about the surgery and I had tears in my eyes. We pulled into the parking lot (he was out for lunch with friends) and I saw a monk. He was dressed in brown robes with a big beaded cross leaning on the car beside us texting. It was one of those surreal situations that made me do a double take. I am taking it as a sign that everything will be ok.

Throughout this process one of the hardest things to deal with is that I need to surrender and trust other people. I can’t be in control, I can only advocate for myself. I have always believed that everything happens for a reason and that the goal is to learn throughout the process. In a week I am going to put my life in the hands of others and have faith because that’s all that I can do.