WARD 6 WEST (post 6)

Finally, after just short of 40 hours in ICU I was moved back to the high dependency ward on 6 West where I was greeted with so many familiar faces including my beautiful mum. I explained the events of the night before in ICU and encouraged mum to go home so I could get some much-needed rest. I felt like I could sleep for days however I still required the nasal prongs which didn’t make getting comfortable easy and needed observations every 2 hours, so I didn’t get the consistent rest that I craved.

Later that afternoon I was fortunate to be moved back to the individual room I was in prior to surgery with my own ensuite. From there I had spread out visits from Ryan, my dad, my sister Courtney and of course mum came back. My memory of these visits is very vague, Courtney has since explained how shocked she was to see the condition I was in. I was still struggling to stay awake and would fall asleep mid conversation.

As I had to fast for the surgery, I hadn’t eaten anything apart from a small nibble of bread since Monday night due the nausea. On Friday morning the neuro team performed their rounds and one of the surgeon’s queried that he hadn’t seen me moving around much. I explained that I physically couldn’t because I still felt so sick. After looking at my medicine chart it appeared, I was being given 4 different types of anti-nausea (some had vomiting as a side effect, go figure) and 3 different medications for pain control. The surgeon advised the nurses to cut back on the amount of medication I was being given. By that evening I was out of my bed for the first time since Tuesday morning and I was able to eat my first meal since Monday night.

How ridiculous, I was being given medication to correct one problem but that would result in another side effect that required another medication and so on, it was a vicious circle. By the next day I no longer required any anti-nausea medication and was down to only 2 pain killers, one being paracetamol.

Just like the week before, as time went on my strength and control on the right side of my body was slowly improving. Between visitors, physiotherapy and OT sessions my days would come and go so quickly in hospital. As much as it broke my heart, I decided it would be best to keep Brody and Millie away from seeing me in the poor condition I was in after leaving ICU. Brody, who was almost three was old enough to know something wasn’t right with mama and I didn’t want him to have any visuals. I hadn’t seen them since the day before surgery (5 days).

Once I was up and about again, I had a session with the hospital physiotherapist who watched me hobble around the ward and gave me exercises and stretches to focus on. After my initial session my case was taken over by a student physiotherapist who would spend 20-30mins with me every day testing my strength and retraining my brain to be able to walk normally, go up and down stairs, change direction, walk backwards, step over objects etc. Like most people, these are movements I was able to do without consciously thinking before the stroke and now they were extremely challenging and required a lot of intense focus.

Another service the hospital offered patients was Occupational Therapy. My first session with OT was the day before my medications had been reduced and I could barely keep my eyes open for the introduction. The OT tested my memory and cognitive thinking and encouraged me to practice handwriting as I had been unable to write due to the weakness in my right arm. OT had a major focus on my home life and discussed how I thought I would manage returning home especially as I had Brody and Millie to consider. Brody had been attending childcare one day a week since I was originally pregnant with Millie and we had arranged for Millie to start childcare in April as I was due to return to work after maternity leave. We were unaware that through the government the childcare was able to provide our family with 6 weeks of care for both Brody and Millie due to our circumstances which was extremely appealing from an OT perspective.

On Monday 19th March (POD6) I was scheduled to have a repeat Angiogram to ensure the AVM had been completely removed. I was so nervous as I had found the previous angiogram to be extremely uncomfortable, painful and I had also bruised quite severely. I was also scared that the surgery hadn’t been successful, and I would have to go through the torture of the previous week again. Fortunately, I had the same nurse that made me feel extremely comfortable at my last angiogram and the doctor had a much more pleasant bedside manner. The team performing the procedure were absolutely amazed with the bruise I had developed and found it quite ‘cool’ as they don’t normally get to see repeat patients, especially so close from the last procedure (mine was 2 weeks prior).

To refresh memories an angiogram is a procedure that uses a fluid 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 through the same entry point as last time. Due to the bruising the doctor decided to seal the entry simply with compression to prevent further bruising which meant I wasn’t allowed to sit up-right for 4 hours.

When I got back to my room, I noticed that my right hand was extremely tingly and cramped up. I called the nurse straight away who contacted the doctors. As I waited for the doctor my mum arrived as she had every night since I returned to Ward 6 West. Mum would stay with me (way past visiting hours) and wouldn’t leave until I was tucked up in bed, she was amazing! As she walked in my right hand completely froze and I couldn’t move any of my fingers. Mum called the nurses again to follow up on the doctors. When my neuro team arrived, they were smiling as they had reviewed the angiogram report which showed no sign of the AVM but I burst into tears. Their faces were shocked as they were telling me it was good news (this is the first time they had seen me cry in my two weeks in hospital).

After experiencing what it is like to lose control of one leg to now losing control of a hand/arm I realised how much more I relied on my hand. Any procedure involving the brain portrays risks and I was convinced that I had lost my hand function as a result of the angiogram. The doctors observed that I was unable to move my fingers from the cramped position my hand was in and sensed how distressed I was and ordered another CT scan to be performed as soon as possible.

While I was waiting Ryan facetimed me with the kids and I broke down on the phone. I can still clearly remember Brody asking, ‘you ok mama, you sad? 'I think seeing me so distraught also caught several of the nurses off-guard as I had been so strong prior to this moment. Thankfully the CT scan was clear, and the doctors assumed I had a reaction to the dye that was used during the angiogram or there was a chance I had developed epilepsy and my frozen hand was a result of a seizure. The doctors arranged for me to have an EEG the following day to hopefully eliminate that option. Mum stayed with me that night until I fell asleep and when I woke up in the mid hours of the morning, I had gained most control of my hand again.

When the doctors did their rounds on Tuesday morning the room was filled with smiles as I had gained movement back and the surgery was a success. The doctors mentioned that I would be going to rehab, and my heart sank, I just wanted to get home to my family. The head nurse piped up and said she knew I was desperate to get home and would try and make that possible for the next day but I would have to pass assessments from physiotherapy, occupational therapy and also have an EEG to rule out the development of epilepsy which was a high risk from surgery.

The OT assessment occurred when my sister Kaitlyn was visiting and was performed in the OT kitchen. The therapist explained where everything was and encouraged me to cook something focussing on using my right hand. I decided to keep it simple and made a piece of toast and 2 cups of tea. I attempted to carry both cups of tea at the same time which was a terrible mistake as one spilt all over the floor (my affected hand). I must have made a fine piece of toast though because I passed yay!

Later Tuesday afternoon I had an EEG to rule out epilepsy as the reason my hand froze up the night before. An EEG requires small metal discs (electrodes) to be placed on the scalp which send signals to a computer that track and record brain wave patterns. The test took about 40 minutes however half of this time was taken up with placing the electrodes around my scalp.

By Tuesday night I had the tick of approval from Physio and OT I was now just waiting for the epilepsy team to review the EEG results. As I could potentially be going home the following day one of the surgeons instructed a nurse to remove the staples from my wound, all 21 of them. Thankfully my mum and sister Courtney were visiting me at the time and were able to distract me while they were removed as the thought if this made me feel rather queasy.

During the night my blood pressure dropped extremely low and I was put on IV fluids to help increase my blood volume. I was furious as at this point as I was still being prescribed medication to prevent hypertension (which I clearly didn’t need) and if this prevented me from being able to go home, I would have cracked it.

The morning of my potential going home day finally came around and Ryan was with me from 7am, we were both feeling very positive. The surgeons visited us and reiterated that I just needed the epilepsy results to be clear and I could go home. Later in the morning a junior member of the epilepsy team confirmed I had the all clear however I would need to wait for the ‘head’ team member to meet with me before I could go. We waited and waited for hours; Ryan was getting extremely inpatient and was pacing around the room. I was busting to go to the bathroom and of course the moment I went the epilepsy team came to my room however they didn’t wait the 30 seconds, they left to visit another a patient and we ended up having to wait another hour before they came back to see me. He tested the strength and movement of my right hand gave me the all clear and it was home time!

21 staples

Bruise from Angiogram

#anewperspective #strokesurvivor #avm #scar #mystory #newlife