Joe Wong, right, with daughter Jillian, centre, and occupational therapist Salma Kassam.
By Louise Kinross
Joe Wong tried for three days to convince doctors at an Ontario hospital that something was seriously wrong with his daughter Jillian, 7, who was hospitalized for flu.
On the third day the Mississauga, Ont. resident showed a photo he took of Jillian’s tea-coloured urine to a new doctor who recognized that she was critically ill, began antibiotics, and transferred her to a children’s hospital. On arrival she was put on a ventilator. “Close to 90 per cent of both lungs were infected and the doctor told us we need to prepare that she may not make it,” Joe recalls.
Jillian was eventually airlifted to The Hospital for Sick Children (SickKids) where it was discovered she had three infections, kidney failure and a brain injury caused by lack of oxygen during her hospitalization. Doctors said there was no guarantee she would walk or talk again.
“My guilt runs so deep,” Joe says. “I feel guilty because when she was first in the hospital I kept telling them I think she has an infection and they’d say no, don’t worry. And I’d ask again. I feel guilty that I didn’t push hard enough. I knew so strongly that it was more than a fever, but it took me three days to get their attention.”
This is a story about what happens when health workers listen to parents, and what happens when they don’t.
On Mother’s Day Jillian had a fever. The next day Joe took her to the family doctor who diagnosed flu and prescribed Tylenol and Advil. A day later Jillian couldn’t eat or get out of bed. Joe took her to a local ER and was told to continue with the pain relievers. He insisted something more was happening, and drove to a second hospital. They admitted her but agreed with the flu diagnosis and continued the pain meds “despite her temperature being out of control,” Joe says.”I kept telling the nurse she needs antibiotics, but was told she didn’t.”
His wife Kristy noticed Jillian had vomited up what looked like blood, “but I asked the nurse and she said it’s not blood.” Joe saw that Jillian’s urine looked an odd “tea colour, but the doctor said it was only dehydration and nothing to worry about.” Joe was so concerned he took a photo. Jillian began having trouble breathing and her oxygen saturation dropped to 85 per cent.
Jillian was eventually diagnosed at SickKids with multi-system organ failure, a brain injury caused by a lack of oxygen, and respiratory distress syndrome.
“SickKids was like coming to a whole new world,” Joe says. “When we were at SickKids, they didn’t let Jillian’s oxygen saturation drop below 92 per cent,” Joe recalls. Where she was first hospitalized “it was 85, and they allowed her heart rate and blood pressure to skyrocket. At SickKids they figured out ways to control them.”
Jillian spent the summer doing brain injury rehab at Holland Bloorview and has made remarkable progress. Joe says the big difference in care at SickKids and Holland Bloorview is “they listened to us, and if we expressed a concern, they met it right away. At the other hospitals no one listened to us.” His wife Kristy adds: “Before we were not asked about anything, they would just give their opinions.”
Kristy says therapists at Holland Bloorview have worked to get to know Jillian by asking them questions. “When we first started occupational therapy here, they were trying to get Jillian to match colours but she wasn’t interested,” Kristy says. “She’s very mature, and she doesn’t want to play something if she thinks it’s a baby game. We had very good communication with her therapists and explained that if you give her a board game or a sheet of colouring or a sheet of work she will love it, and they listened. They changed a lot of their ways of coaching her. They caught on to her interests, and I think that’s why she’s improving so fast. We also found it helpful when therapists gave us activities that we could practise with Jillian.”
Joe says it’s hard to imagine that when she arrived here “her whole body was swollen up from head to toe and she couldn’t move.”
“Now look at her,” Kristy says, laughing. “She’s walking, she’s jogging. She even talks back now. We are very thankful.” Jillian continues to work on her memory and multi-tasking, Joe says.
Kristy says that earlier on when she couldn’t communicate, Jillian began grinding her teeth hard. “We thought it was anxiety. We reassured her that she’s very sick and the doctors and nurses were here to help her, and she would get better slowly. I asked the doctors to let me know in advance that they were coming, instead of just popping in. I wanted to prepare her by explaining what they were going to do. Slowly she stopped grinding her teeth.”
Kristy and Joe make an effort not to focus on their initial struggles getting care for Jillian, but on her current wellbeing. “I’m very grateful that she’s with me right now,” Joe says. “Not knowing if my child will survive was the most challenging thing for me. I couldn’t sleep. I couldn’t even dare to dream of a day without her.”
Kristy aims to stay in the moment. “I don’t expect too much for her in the future,” she says. “Once you expect too much you’re giving yourself pressure and the kid pressure, and the kid feels it. Whatever she’s doing right now is good. We reward her every time she has a little improvement. If tomorrow she can do better, that’s good. If tomorrow she is still the same, that’s okay. We tell her she has her parents with her and her whole family is waiting behind for her at home.”
Jillian is being discharged this week and will return home to her sister and to her Grade 3 class in a local school.
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