Sunday, December 11, 2016 6:55 am ·  0 Comments
On the morning of Monday November 7, 2016 life for the Long family very suddenly became very different. It was a normal, bright and crisp late-Autumn morning, one brother had cycled to school early to play soccer with his friends, and the other had gone down to the bus-stop, Rosie set off to cycle to school as usual. But half way to school, a school bus pulled out of a parking lot on Sixth Line just as Rosie was riding by, and ran her over. The resulting in news reports across the region.
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 Holland Bloorview Kinds Rehabilitation Hospital 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
If you wish to support the Long Family, you can go to the GOFUNDME: Rosie Sparkles Fund.
10 Year Old Girl, Bowls, Catastrophic Injuries, Cycling Accident, GOFUNDME Campaign, Halton Regional Police, Holland Bloorview Kinds Rehabilitation Hospital, Kidneys, McMaster Children's Hospital, Monday, November 7 2016, Respiratory System, Rosie, Rosie Long, School Bus, Sixth Line, spinal cord ischemia, Tracheostomy, Upper Middle Road