THE WAIT (post 3)

Sunday 3rd March

Neurosurgery ward 6 West is where I would spend the next 2.5 weeks. I was admitted to the high dependency ward shared with 3 other patients, male and female. In my previous hospital experiences when I gave birth to our children I was in a private hospital which felt more like a hotel with a private room and ensuite so the shared room situation was a massive shock at first. Ryan had left to retrieve some belongings from home as I literally had nothing with me and returned just in time to capture one of the most humiliating moments of my life. To do a simple task such as going to the toilet (something I’m sure majority of people take for granted every day) I now required the assistance of a nurse and a commode. During this entire experience Ryan has somehow always managed to make me laugh when I could have easily broken down and I am so thankful for his personality during this time. As word got around with what had happened Ryan and I couldn’t look at our phones without tearing up. The love and support we had around us was extremely overwhelming. That night I was woken every two hours for routine observations that consisted of strength and memory tests, pupil dilation and blood pressure. To test my strength I would need to grip the nurse’s hands and pull them towards me and push them away and pull and push away my feet from their hands. I was asked the following questions what’s your name, where are you, what day is it, date, who’s the Priminister etc…

Monday 4th March

At 8am I was greeted by a team of neurosurgeons who introduced themselves, further discussed my condition and explained what the next step would be and the risks involved. I was scheduled to have an angiogram at 1pm and would need to fast from breakfast. An angiogram is a procedure that uses a contrast containing iodine and x-rays to produce pictures of blood vessels in the brain. A catheter is inserted into an artery through a small incision of the skin and in my case this was in my groin. Finally at 3pm I was wheeled to the surgical theatre where the procedure was performed. It was cold, loud and extremely uncomfortable. One of the nurses reminded me of an old friend which helped to settle my nerves. I was awake during the entire procedure and not allowed to move as it could result in the surgeon nipping another part of my brain causing all sorts of complications including having another stroke. The doctor told me off at one point for swallowing. My head was strapped to the table and the x-ray cameras would circle around my head. Before the contrast was injected I would get a warning on where I may feel a change in sensation, quite often a part of my body would feel extremely warm or I would get a metallic taste in my mouth. It still amazes me that the catheter was inserted into my groin to view my brain… CRAZY!!!

After 45 minutes I was wheeled back to the shared room where I was on observation checks every half an hour which increased to every hour through the night. I had to lay flat on my back for 2 hours and wasn’t allowed out of bed for 4 hours after the procedure.

Tuesday 5th March

8am I was once again greeted by the neurosurgery team which is when I realised that was the time they did their rounds of the ward every day… dah! They discussed the outcome of the angiogram and told me the risks involved if the AVM was removed and the risks if I decided to do nothing about it which included a 40% chance of another stroke, brain damage and a 10% chance of death due to further bleeding. The risks involved from surgery also included the chance of another stroke on the operating table, weakness on one side of the body, numbness, tingling, speech and visual problems and the chance of paralysis. On a positive note once an AVM is surgically removed it does not grow back, I would be cured and the risk of further bleeding is thus eliminated. Although an overwhelming amount of information to process, for me not having the AVM removed was never an option. I personally would not have been able to enjoy life to the fullest again knowing that I had a ticking time bomb in my brain and I made the decision on the spot. It was then explained to me that for the best outcome the team wanted to delay the surgery to the following week to allow some time for the swelling on my brain to reduce. Did I hear that correctly, another week in hospital before they even operate…? I instantly thought of Brody and Millie and asked if I would be able to return home whilst waiting for surgery, unfortunately the risk was too high and I was required to stay admitted in hospital. This broke my heart.

As I wasn’t able to stand up and my right arm was weak I needed assistance to have a shower. Thankfully Ryan was with me and helped me undress and have a shower in a chair (again having a shower alone and standing up is something I personally took for granted before this happened to me).

Wednesday 6th March

The surgeons informed me that they were deliberating the best method to remove the AVM and would discuss further at their surgeons meeting held on Friday. At this point they believed for the best outcome I would have another angiogram (noooo) the following Monday 11th March where each end of the AVM would be sealed for the purpose of making the surgical removal easier and the surgery would be performed on Tuesday. I hated the thought of another angiogram however through this entire experience I had complete trust in my neuro team and knew they wanted the best outcome for me. Again, they discussed the risks involved and as always I just nodded and said I understood what other choice did I have? Ryan bought Brody in for his first visit; I can still remember his face as he ran across the room shouting ‘my mama’. By Wednesday afternoon I noticed that among the numbness and tingling I was starting to get some movement back in my right leg (a result of the swelling on my brain reducing) and was able to hobble to the toilet with the assistance of a nurse but no longer required the commode. The beds rotated quickly in the high dependency ward as patients were usually only in there for observation post surgery. There became a demand for beds and as my surgery was delayed I was transferred to my own room with a beautiful view that would capture the most amazing sunrises (I was yet to discover as it was pitch black at this stage). Thankfully my mum had been visiting at the time and was able to help move my belongings and set my room up. For the first time since my hospital stay I was not connected to any machines and the nurses told me they would no longer do routine observations through the night however; if I was to wake at all to ‘buzz’ them and they would do the obs then. When mum left that night I was terrified. I felt so alone and the emotions of the past four days caught up on me. I never thought that I would be upset to leave that shared room. I cried and cried and cried. Knowing that the nurses wouldn’t be checking on me regularly like they had been I couldn’t get to sleep as I was absolutely convinced that I wasn’t going to wake up. I was so convinced that I wrote goodbye letters to Ryan, Brody, Millie, my parents and my sisters. I hope I never feel that much heart ache again.

Thursday 7th March

I woke up! And I was able to witness my first sunrise in my own room with my own ensuite, it was almost like I was back at Northpark Private. As I looked down from my room I couldn’t believe the number of patients that were smoking in their hospital gowns, wheelchairs and one lady even had a drip attached to her. I also saw a man who had been in my shared room the day before who had just had brain surgery and he too was smoking and drinking a Red Bull. This is when anger kicked in. How could I, 4 weeks away from turning 30 and the fittest and healthiest I had ever been as I had been training for a half marathon, someone who believes in health and looking after myself be going through this. This was the first time I admittedly thought, why me? In my fury I was again greeted by the neuro team who were just checking in on me and warned me that after the meeting on Friday the head surgeon would introduce himself and not to be alarmed by his lack of bed-side manner…. Ryan also bought Millie in for her first visit. We decided to separate the kid’s initial visits so I could spend quality time with each of them.

Friday 8th March

Our 5 year wedding anniversary! Unfortunately we had to cancel a reservation we had previously made at a winery in Healesville before the stroke (we are yet to get there yet, but we will). 11am we were scheduled to have a meeting with the neuro team to discuss the final outcome however the team were required for an emergency procedure pushing our meeting out to later that day. We were previously granted permission to leave the hospital premises that night to enjoy an anniversary dinner on Burgundy Street which we were both so excited for and spent the afternoon trying to decide where we would venture off too. 5pm one of the team members popped by to convey the outcome of the meeting. After much discussion and study of the angiogram images it had been decided that the AVM appeared to be closer to the surface of my brain than originally anticipated and would require one procedure, the surgery. I was absolutely over the moon with this decision as one less procedure meant there was a decreased chance of risk. Unfortunately he was also the bearer of bad news as the head surgeon had over ruled him and we were no longer allowed to leave the hospital premises for dinner. So what’s the next best thing to a romantic dinner for two….. KFC in my hospital room. As long as we were celebrating our milestone anniversary together, we didn’t care where we were or what we ate.

Saturday 9th – Monday 11th March

I filled the weekend up with countless visitors to help take my mind off the upcoming surgery and to make the time go by quicker. My room was over flowing with flowers, chocolates and the most thoughtful hampers that had been put together for me. By the end of the weekend I was walking (hobbling) my guests from my room to the elevator to wave goodbye. On Monday the head surgeon finally came around to my room to introduce himself and he was absolutely lovely and explained the procedure in terms that were so easy to understand. Unfortunately Ryan wasn’t with me at the time but my parents, grandparents and one of my sisters were there and he put us all at ease. My mum stayed with me late that night, I knew she didn’t want to leave me so I just let her stay as long as she needed as I can’t imagine how hard it would be to watch your child going through this.

Family visits

My first time using the commode

Sunrise from my room

Brody

Millie girl

Celebrating our 5 year wedding anniversary with KFC