The Rosie Sparkles Fund
$46,580 of $50,000 goal
An awful lot has happened to Rosie since then. Straight after the accident she was taken to McMaster Children’s Hospital by ambulance, and was rushed into the operating room via the trauma suite in Emergency. In a marathon surgical session, the extraordinary Emerg and OR teams looked after some of the critical things that were endangering Rosie’s life. We learned only some days later just how close to the edge Rosie was when she arrived: the trauma team are so unutterably calm and controlled despite the split-second life-or-death decisions they are making, that it looks almost balletic through a glass door. In that first 4-hour surgery, Rosie had repairs to several major internal systems and arteries, and her spleen was removed as it was bleeding too much to repair. Her kidneys were damaged but functioning. Some of her internal organs had been pushed up into her chest cavity, rupturing her diaphragm on the left side: the ongoing challenges from that injury have been the cause of a lot of Rosie’s respiratory difficulties over the last three weeks.
Rosie has been back to surgery three times since that first day: addressing injuries to her respiratory system, bowels and kidneys, and most recently having a tracheostomy so that she can get support from a ventilator via her throat, rather than having to have an invasive and uncomfortable breathing tube down her mouth. As well, she has had a number of minor diagnostic and surgical procedures that did not require the full-on services of the operating suite. Rosie has had a few ups and downs over the course of her stay in hospital. She suffered respiratory failure when her breathing tube was first removed, and had to be re-intubated: she is still connected to a ventilator through the tracheostomy, but the machine is doing less and less work as she slowly recovers from surgery. Surgically, Rosie’s abdomen is steadily getting better too, and all the various specialties who have been involved in that are happy with her progress – although she is under very close observation as she frequently spikes a fever and her fluid balance is still not stable.
Having spent the first ten days or so very heavily sedated and immobilized, Rosie has gradually become more aware of her surroundings and – although it’s still very confusing for her – understands why she is here and what is going on with her treatment.
Until Rosie was awake and alert enough to have a conversation with us about what is going on, it has not been appropriate to share our news widely. It’s Rosie’s story, and it’s right that she should know it before others. That has meant that, as we have been updating local friends and neighbours, much has been left unsaid. Now that her other systems have stabilized and she is no longer on such strong narcotics and sedatives, we have been able to have those discussions with Rosie.
Although there was no damage to her skeletal spine in the accident, the massive internal bleed, and the abdominal arterial damage that caused it, have had some devastating consequences for Rosie. She suffered what is called a “spinal cord ischemia” – essentially a stroke in her spinal cord – due to prolonged and severe low blood pressure in the small blood vessels that supply the nerve column. Not everything has completely stabilized yet, so it’s not possible to have a definitive prognosis, but it seems pretty clear (and the neurology team have been very honest and straightforward about this) that Rosie will not regain the use of her legs, and will be getting around in a wheelchair from now on. Exactly what other functionality she will have from her lower abdomen down is not yet apparent, nor is it clear whether she will have any sensation in her legs: the pathways for motor control messages and for sensory messages are in different spinal cord “bundles” and while Rosie is still in spinal shock (a sort of self-protection mechanism where the body shuts down some base reflex reactions after a spinal injury) it will remain unclear exactly how her recovery and rehabilitation will play out.
Obviously, there are huge implications for Rosie and for the rest of the family. We are extraordinarily relieved that Rosie was wearing her cycling helmet on November 7 – it absolutely did its job of protecting her head and there is no sign of any head or neck injury. As she is weaned off the narcotics, Rosie is awake, increasingly alert, but naturally very confused and frightened about what is happening. We will continue to talk to her about what has happened and why, and to concentrate on what she will be able to do, rather than focus on what she will not. In the medium term, she will likely be discharged from McMaster in a few weeks, when she is ready, and be transferred as an inpatient to the Bloorview rehabilitation centre in Toronto. We have heard wonderful things about Bloorview, which specializes in rehab for kids with spinal injuries. She will meet other people there who are in similar circumstances but are a little further along on their journey, which we hope will give Rosie courage and inspiration to face the enormous hurdles ahead. In time, she will be discharged home from Bloorview, but will continue to visit as an outpatient.
For the moment, though, Rosie remains in the Paediatric Intensive Care Unit, still connected to a ventilator via a tracheostomy (and so unable to talk), a feeding tube and an intravenous drip line. Because of the nature of the ICU, it’s still not really practical for Rosie to receive visitors, but she is definitely looking forward to welcoming friends to visit as soon as she is able to.
Meanwhile, there will need to be some changes at home – starting with the obvious, which is to make the house wheelchair-accessible and give Rosie access to as much that is familiar as we possibly can. There are specialists and consultants for that part of the process too, who are standing by to advise and guide us as necessary. And when the time is right, our active and healthy little girl will doubtless want to start training for the 2024 paralympics!
The whole family has been overwhelmed by the support we have received from the community – from keeping us in your thoughts, to cooking the most amazing meals for us, to walking the dog, looking after the boys, and for the financial assistance for groceries and gas – and myriad other kindnesses we have been shown. And of course a huge thank you to all of Rosie’s friends who have sent such wonderful cards and gifts to keep Rosie’s spirits up in hospital. We are, and will continue to be, grateful to all of you as we begin to adjust to our “new normal” and work to get Rosie home again. We are also in compete awe of the staff at McMaster, who have been unbelievably caring and kind to Rosie and the whole family, as well as doing a very difficult job exceptionally well in trying circumstances. Rosie has been seen by so many different specialists, the clinical management team have done an awesome job ensuring that not too many things are all happening at once. Nursing, respiration and therapy teams have been wonderful, keeping us all going with good humour and an unending supply of compassion.
Finally, the bit we find almost harder to write about than anything else. We are dealing with all the implications of a major accident and catastrophic injury, with lawyers and insurance companies all swinging into action on Rosie’s behalf to ensure that her immediate and long-term financial needs for medical and rehabilitation services are adequately met. We know that many of you have been asking if there is a way you can help financially too. Some family friends have, on our behalf, set up the Rosie Sparkles Fund, which will in time be an additional source of funds for Rosie to draw on as and when she needs additional help. Donations to that fund can be made at any branch of the Royal Bank of Canada. As there have been difficulties accessing this account overseas this GoFundMe profile has been created in an effort to alleviate those issues. We thank you for your support.
The Long Family – Kate, Doug, Patrick, Rosie and Ned.
A lot has happened in the 319 days since the accident last November. We’ve gone from hoping that Rosie would survive the day, to watching her thrive, back at school with her friends; exactly where she should be! Rosie’s return to Sunningdale has gone remarkably smoothly due to the incredible Mr Silvestri and his amazing team. Rosie is delighted to be back with her classmates and is busy zipping around the corridors and out playing soccer at recess. By all accounts (admittedly mostly Rosie’s) she’s quite a good goalkeeper!
Outside school, Rosie is back singing with her choir, doing lots of physio (not her favourite!) and is about to take up sledge hockey. Her social life is as extensive as ever and one is never quite sure how many young ladies might be in the house at any given time! Between Rosie and the boys, we are happily all over the place, just like we used to be.
Because of this Rosie has requested that we stop posting on the Rosie Sparkles page. She is adamant that everything is normal now and there are no great accomplishments to report. Obviously, we think that everything she does is fabulous but we will honour her request and this will be the last Sparkles update. All through this journey (one that none of us wanted to be on) Rosie has been the first to say “it’s OK” and that “it will be alright”. She’s had her moments of sadness and anger but in general her attitude continues to astonish. She just gets on with it and we all just get on with it right along with her.
But we haven’t been alone for the past 319 days and for that we must thank all of you. Whether you are family; or neighbours and friends; or friends of neighbours and friends; whether you are nearby or on the other side of the world, we owe you a massive debt of gratitude. Thanks to you, every step we’ve taken has been supported and strengthened through your kind words, hugs, delicious meals, gift cards, donations, and incredible fundraising skills. Thanks to you we’ve been OK both emotionally and financially and we’ve been able to purchase the amazing high tech pink wheel chair that makes Rosie sparkle indeed!
We also can’t say goodbye without mentioning the tireless work of the wonderful people at McMaster and Bloorview – we will be forever grateful for your care and for our Rosie. We look forward to working with you as Rosie grows, and with the awesome folks at ErinOaks Kids.
As we sign off, we are excited for the future. There will be some major renovations on the house next year, we are anticipating good times spent in hockey rinks as well as concert halls, and the kids are planning extensive travel scenarios! Whatever happens, we’ll follow Rosie Sparkles’ example and just get on with it!
Excitement and Frustration
It’s been another busy couple of weeks for Rosie. Since the removal of her tracheostomy, the new-found freedom to move around the hospital without a medical retinue has been a huge boost to morale. We’ve discovered all sorts of interesting parts of the building – including a rather lovely glass atrium with trees and waterfalls, that’s actually in the building next-door but connected by a footbridge to the main hospital.
Most excitingly, though, Rosie was given permission to leave the bounds of the hospital altogether, taking a wheelchair-accessible taxi to a local shopping mall. Retail therapy, it seems, is a genuine medically-approved procedure! Seriously, though, the important aspect of the trip was to get Rosie comfortable with being away from immediate medical support, and to allow her to experience being in a public place in her wheelchair. We were able to buy some wheelchair-friendly clothes, too, which was an added bonus.
This trip was to have been the precursor to a visit home on Wednesday evening, but alas, three-quarters of the household succumbed to a tummy bug on Tuesday night and that plan was abandoned as it would be counterproductive for Rosie to come home to a house full of sick people. So we’re regrouping for early next week instead.
In the meantime, progress on Rosie’s remaining medical issues is slow but steady. The nutritional/gastrointestinal teams have reassessed Rosie’s digestive system, and adjusted her nutritional intake a bit: she was not gaining weight adequately to alleviate some of the physical symptoms in her abdomen which make it difficult for her to process food taken by mouth, so is still reliant on a feeding tube for her calories. The other significant news surgically is that the repair to her right kidney is scheduled for this coming Friday, 27 January, at which point it’s hoped that Rosie will lose the nephrostomy drain in her right side, and will be able to begin the process of managing her bladder output more actively. In due course this will become a part of her rehabilitation therapy.
We still don’t have a firm date for the move to Bloorview – the process is well under way, with introductory visits for Kate and Doug scheduled this week, and briefings and phone calls between medical teams taking place regularly. After the kidney surgery we should have a clearer picture of when Rosie will be ready to make that transition.
New Year update for Rosie
It has been over eight weeks since Rosie’s accident. There have certainly been setbacks along the way, but the general trajectory of Rosie’s condition has been one of steady improvement, and there have been some significant changes in the last few days which are very encouraging.
The biggest of those changes is that Rosie’s breathing has improved to the point that she is no longer dependent on a ventilator, although she still has the tracheostomy itself in place. Becoming “vent-free” has been the last hurdle to discharge from the ICU. There are a number of other ongoing challenges for other systems, including gastro-intestinal and urological, but these do not require minute-to-minute monitoring and can be handled by the Complex Continuing Care unit – otherwise known as the 3C team. After 59 days in ICU (a very long stay by ICU standards) Rosie has now been moved down the hallway to a room in the 3C unit (confusingly on ward 3Y) where she will stay until she leaves McMaster.
It’s a big step for Rosie – and bittersweet for all of us, too, as we have been so wonderfully well looked after on the ICU, and have become familiar and friendly with so many of the lovely staff on the unit. But due to its very nature, care in the ICU tends to focus on the critical and acute, and moving Rosie to the 3C organization will allow more emphasis to be placed on rehabilitation and on preparation for a move to Bloorview, which is likely within the next couple of weeks.
That move, too, will be a significant step on Rosie’s journey to rehabilitation. We now know a little more about what to expect from Bloorview: it will be very hard work for Rosie, but with strong peer support and a clear set of goals, we know that she will tough it out and challenge herself to get to a point where she can come home.
Thank you for the updates on sweet Rosie. She sounds like a strong girl and I know she will keep her spirit up and a smile on her face. Nice to hear she is back at school with her friends. The updates have been well written and heartfelt, I'm sorry we won't get anymore but so glad she is doing well.
I am so glad that Rosie is doing well. I wish her all the best in the future :)