This is part 2 of my family’s journey with my sister, Candi, who had a terrible accident 6 weeks ago. It has been a life changing experience which I have decided to share with whomever decides to read it, with the hope of inspiring and supporting others who have gone through a traumatic experience with a loved one. If you missed part 1, start here first.
The Things We Take For Granted
My darling sister, Candi, who I love with all my heart, spent 6 days in ICU before being moved to the spinal ward. From the moment she woke up, Candi couldn’t look right, couldn’t talk (once the breathing tube had been taken out a few days later), and couldn’t really focus on us. At first we assumed this was due to the head injury, but as the days went on the doctors grew more concerned, yet nothing seemed to be done about it! In fact, when she was still in ICU, my Mum was shocked to hear one of the doctors say Candi was being “stubborn”. Stubborn?! How about you do your job, doc, and run some scans to find out the real cause behind Candi’s Dysphasia (breakdown in language).
As Candi couldn’t communicate or follow commands, the doctors were unable to begin with muscle testing and sensation. To this day, this has still been limited but is definitely improving…I will explain why a bit further down.
The physio Candi was mostly given in the first 2-3 weeks, was for her chest. About 4 times a day she had a tube stuck down her throat to suction all her secretions…something you and I are able to cough and clear without even realising we’re doing it. This was always such a traumatic experience for her, and was so momentous when she was able to cough on her own and no longer needed this treatment. In fact, the physio, nurses and doctors were all very pleased with how quickly she was able to stop this treatment, especially since soon after she was moved to the spinal ward, her chest was so bad and she needed so much suctioning she almost was taken back up to ICU.
Candi also has to be turned every few hours by the orderly’s (who have all been so lovely) for pressure care and so she doesn’t get bed sores. Her arm positions are changed every 2 hours from being down by her side, to being in splints and in what they call the “crucifix” position. Can you believe that? My Mum promptly told the nurses to refer to it as the “cross” and not the “crucifix” thank you very much.
Did You Miss That Day In Uni?
There have been times when my family’s experience with the hospital (considered the best hospital in Perth) has not been the best. Although we believe the nurses and doctors are (mostly) very good at their job, we’ve also experienced a breakdown in communication on more than one occasion.
I won’t go into too much detail in case we decide to take matters further, which is also why I’m not mentioning the name of the hospital. However, I will say this. When Candi was moved to the spinal ward, a few days later she started to make some noticeable progress. Then all of a sudden she made a turn which was visually obvious to me and my family. Her speech got worse; the expressions on her face looked different and my brother in particular, knew something had happened.
The next day Candi’s consultant (surgeon) came in to see her and to talk to us, which I always hated. It seemed every time he or one of the other specialists spoke to us, it was to give us bad news. The consultant for the third time told us his ‘worst case scenario’ prognosis (which they legally have to do). My brother then said to him…”I know my sister really, really well, and something’s not right.” The consultant said Candi had already been booked for an MRI which could take up to 3 days, as they were all concerned about her inability to talk, and needed to see if brain damage had occurred.
Dad and Kate were on the phone (without realising it) pretty much at the same time to the Patient Liaison Officer, to…
- Insist the MRI was done within the next 24 hours
- Ensure the meeting we were told we would have with Candi’s team of specialists (it had been 3 weeks now!) would be organised asap.
- Get the speech pathologist in (to check on Candi’s dysphasia and dysphagia (difficulty to swallow)
- Organise the pain specialist to see Candi and prescribe her some pain medication stronger than f***ing panadol!!!
Other departments of the hospital including the Clinical Nurse Specialist of the spinal ward were also involved to make the above happen. And guess what? On the same day, Candi was finally taken to have an MRI plus other scans. These sadly revealed she had suffered 5 strokes as a result of blood clots being formed at the time of the accident (which would have saved her life) that then broke off and caused strokes. And Sam picked up on this and told one of the nurses prior to the MRI, that this is what he thought had happened.
Kate has joked about getting t-shirts made up with “Team Candi” on the front and “did you miss that day at Uni?” written on the back! Haha! She’s actually serious but Mum said she couldn’t write that on the back, so we’ve joked about putting it in small writing under the arm so if there’s little stuff ups again, we can just flash them our armpits 😉
Just When You Think It Couldn’t Get Any Worse
This news hit us all hard. Just when we started to have a glimmer of hope from Candi’s progress, we were punched in the guts with more devastating news. Life can be so cruel. It was initially very difficult to bounce back to ‘positivity’ after finding this out. I truly have amazed myself at how strong I have been throughout all of this, even managing to still train most clients, run my blog, cook for mum and I in the first week, put a brave face on for Candi and spend at least 6 hours a day at the hospital, but this news was too much for me. I was truly inconsolable.
Amazingly, the day after this news, Candi started to make progress again and has continued to ever since. When we had our meeting with the neurosurgeon, who was a lovely man that explained everything very clearly to us, he showed us which areas of her brain had been damaged, that happened to be mostly the left side. He said Candi’s brain damage was moderate but that it was possible for Candi to make a full recovery. He also said it was impossible for him to give us a definitive prognosis as every case is different. The same day we found out about the strokes, I pulled out a book of mine I happened to read 3 years ago, called The Brain That Changes Itself, which is all about neuroplasticity and the brain being plastic (changeable). It has a chapter on strokes. I re read this chapter and then gave it to my Mum, who pretty much read the whole book in a nano second before having this meeting. This book has once again given us hope, and the neurosurgeon also agreed with this science. The team at the rehab hospital are also very much up to date with neuroplasticty.
The Next Chapter
17 days ago the first chapter ended when we were given the news that the right team was available for Candi at Shenton Park Rehabilitation Hospital. We were ecstatic with this news! Shenton Park has a fabulous reputation, the best in the Southern Hemisphere in fact! And the head consultant, Dr John Ker, who will be overseeing Candi’s care, is at the top of his field and is also very holistic in his approach (this made my Mum and I very happy!).
And you wouldn’t believe it…on the first evening of being in this hospital, Candi’s right arm moved! I thought I was seeing things and told my Mum and brother to have a look, so Mum asked Candi to try moving her arm again, and she did! 3 more times!!! The movement was mostly coming from her wrist, but that is much more than we had anticipated…at this early stage at least!
It has been almost 3 weeks now since Candi arrived at Shenton Park. It was decided that she would be in the spinal ward initially (each ward has its specialty) and not the neurology ward. The team has a prognosis meeting every 6 weeks and goal setting meeting with the patient every 2 weeks. At this stage they want to just observe Candi for the first 6 weeks before setting any goals. My family and I were rather disappointed that she wasn’t going to be starting her therapies yet, but as it’s turned out she has started with some rehabilitation which is very exciting!
The Hard Work Begins
We are absolutely thrilled Candi has started to receive treatment! Especially since she can now bring her hand all the way up to her chest! She is trying desperately to reach her face so she can scratch her own nose! It is so itchy all the time, poor love.
Candi is currently seeing a physio and occupational therapist daily, plus a dietician and speech pathologist. However, the speech pathologist only comes in on Thursdays at this stage. If Candi was in the neuro ward she would be having much more treatments specific to her brain damage, but right now she needs to be in the spinal ward as all the staff are obviously trained in spinal injuries. When we have the first meeting with the team, hopefully this week, this will be discussed and a plan set in place. It seems unbelievable to us that the spinal and neuro wards are at opposite ends of the hospital!
Candi is saying new words most days! She has full movement in her face and is laughing a lot and appropriately to things we say! She has cried a bit more now, which is always tough to see. She gets so frustrated when she can’t communicate what she’s thinking. But we tell her all the time how proud we are of her and how well she is doing. Her comprehension is very good, especially since she gets humor!
A big moment last Friday…Candi’s nasal gastric feeding tube was finally taken out!!! Yay! She can now eat solids so we’ve started making our own mashed up food for her to eat. I missed the first homemade meal she ate that my sister made, but I was told Candi was in heaven!
The next big step forward will be when her neck brace gets taken off. Oh my, it annoys Candi sooo much! Especially when the doctors come in and say “can you open your mouth for me please?”!!!
Looking forward to the next update I write for you all, as I’m positive there will be much more progress to report on!
Michellina Van loder says
I just bought the book, the Brain that changes itself, hoping it will help with my illness. I wish your sister all the good thoughts in the world!
Thank you Michellina! It’s a great book…not sure what’s going on with you but I’m positive this book will give you hope. Best wishes xx
Thanks for sharing your experience your positivity is amazing and I’m sure Candi will reach full recovery with all the love and support from you all much love xx
Thanks honey!!! We do too 🙂