After 13 days in SickKids, enduring 2 Surgeries, 2 MRI's, 2 CT's, 1 X-Ray, and multiple rounds of blood work, not to mention a total of 62 Bravery Beads, we are happy to tell you that Evie has been discharged. Evie and Mommy got home on Wednesday evening, just in time to see the trick-or-treaters!
After Evelyn's surgery on October 19th, she was admitted to the NeuroSurgery ward, 5C, and placed in the Constant Observation room. This room is shared with three other patients, and has it's own nursing station, with two nurses on duty at all times. Each patient had only the space contained within the curtain that pulls around the bed...it was a bed, and a rocking chair. It was small, not very private, and basically a difficult place to spend your time.
On October 24th, Evie was taken into surgery. Once completed, she was transferred to the CCU / PICU (Critical Care Unit / Pediatric Intensive Care Unit). There she was closely monitored overnight, and by 7am was deemed stable, and transferred back to her previous home on 5C. Evie stayed there until a private room became available on Friday October 27th.
From October 26th to October 31st we were given the luxury of our own room. This meant Mommy had a bed to sleep in, and didnt need to walk down the hall to use the bathroom or shower. It also meant our visitor capacity went from 2, to 4......however I think we broke those rules more than we followed them. It meant that we didnt have to listen to 3 other patients troubles, discomforts and guests...I do not mean that to sound insensitive, but it was hard enough to deal with our own issues withour hearing those of others. In the days after her 2nd surgery, a frontal craniotomy resection (for debulking), Evie was medically coping well, but to us, she was very much a different little girl. She was on a morphine drip, and half a dozen other medications to help her recover. She was quiet, and her eyes gazed vacantly. I would tell all her visitors, "I know it's not quite Evie, but the doctors say she is doing really well". We had been told prior to surgery that this would likely happen, simply a delay in processing from having "poked around" in her brain. She was also very quiet, some days only speaking a few words. This was initially a bit of a concern for her doctors, but not for Paul and I....she spoke to us, and could easily be bribed to talk with Skittles. She was eating and drinking very little on her own, and we continually talked about feeding tubes and IV fluids. However, in order to push her body to recover on its own, and not become dependent, she was taken off all IV's and machines on October 27th. By Monday morning, October 29th, Evie woke up and seemed to have "turned the corner". She was expressing interest in eating (for the entire 13 days in hospital, if Evie ate, it was Fruit Loops for Breakfast and Macaroni and Cheese for lunch....AND dinner). She was talking more, though usually still being bribed into it. She was slowly becoming more interactive. Those who saw her over the weekend, and then again by Tuesday October 30th could see a visible difference in Evie. During morning rounds on October 31st, I was a little shocked to hear Dr. Rutka ask me if we would like to go home that day. We have been home now for a few days, and though they have been a bit chaotic, it feels nice to be home. Evie is so much more herself. She is talking a lot more, interacting with everyone, and eating.....a steady diet of Fruit Loops and Macaroni and cheese......though we have been able to sneak in some Babybel, Arrowroot cookies, apples, and Skittles.
Moving forward, the recovery process is well underway. Though the physical signs of surgery are healing beautifully, there are other things that will take longer to heal:
- Evie lost about 13% of her body weight in the weeks around when she first became sick and her stay in hospital.
- Evie is having balance issues. She is currently unable to walk unassisted, and is even having trouble sitting at times. We are working with CCAC for Home Care right now, however we have a referral in for Holland Bloorview Kids Rehabilitation Hospital and will be checking in there as soon as a place becomes available. Evie will likely be doing some form of physiotherapy (starting with fairly intensive In Patient status, and graduating to Day Patients and then Out Patients) for the next 8-10 weeks.
- From the blood work taken while in hospital, it was found that Evie's thyroid has been affected by the growth of her tumour (when last seen by Endocrinology in June 2012, all levels were good). Evie has Pediatric Hypothyroidism, which simply means that her thyroid gland is underactive, not producing enough of certain important hormones. Thankfully, as we have mentioned before, any Hormone deficiency can be treated with synthetic drugs, which Evie will take once a day from now on. This is totally manageable, and is an issue many people deal with all the time.
- Evie will be seeing her entire (expanding) team over the next few weeks for follow ups. Endocrinology will ensure the thyroid meds are working properly and at the right dosage, NeuroSurgery will ensure she is on track from her surgical recovery, Opthamology will re-assess her vision (which seems to be ok, despite all the recent happenings), and NeuroOncology will assess, and evaluate Evie, likely deciding on a new Chemotherapy protocol. It is expected that Evie will need more chemo, as there is still a large chunk of that tumour that needs to be dealt with. However, as surgery told us, chemo was working and killing the tumour, so there is hope that it will continue that process.
As she sits beside me at the table eating her lunch, white cheddar Annie's Mac and Cheese, I asked her what I should tell everyone about her. Her response, "I got a new balloon". She is doing well. Thank you to everyone for all of your continued support. This has been one of the scariest things we have gone through as a family, even more so then 2 years ago when Evie was first diagnosed - likely because we simply know more now. While I was sucked into the SickKids vortex, living in hospital with Evie, Paul was jumping back and forth between home and hospital, picking up the pieces and making sure that everything else was taken care of....and he was able to do this so well because of the help from so many of you. Without those playdates, dinners, drives, hugs, and of course, all the love we felt from all of you, I'm not sure how we could have done it. Thank you.
Take care,
Paul& Kristine
