Lily can’t update her blog right now, as she has had a very bad 36 hours. We are back at Sick Kids in the PICU (Paediatric Intensive Care Unit). We don’t yet know what’s wrong or how we ended up here, but this is where we are.
This morning, at 7:30am, from in my sleep, I heard Jess (I can’t speak in code right now) scream at me that Lily wasn’t breathing. I don’t know how I got out of bed and moved across the 10 steps to Lily’s room, all while dialing 911 and thrusting the phone at Jess, to see our beautiful, strong Lily starting to lose her fight. From somewhere inside me, 17 years of practiced instinct calmed me enough to open her airway and try to breathe for my little girl. I felt for a pulse and felt it, very faint and very weak, but I swear that it was there. My practiced instinct knew that I should start CPR, but I froze and couldn’t do it: I couldn’t place my hand on her chest and push and break those tiny ribs that have already been through so much. So, I kept my fingers on that pulse to keep myself sane and I just kept breathing. Jess was amazing with the 911 operator, got the dog in the crate, met the fire department and while they took over, I started to make my way outside – only getting down the stairs before I saw the same fire fighter run down the stairs with my tiny girl in his arms (and she has never ever looked so tiny) and run her right over to the ambulance. Jess and I just looked at each other, and with a single “Go” she ran to go with our girl. We are incredibly incredibly lucky that we live less than 5 minutes from a hospital, a thought that was echoed by the paramedic who bluntly told us that living that close was our saving grace today. They started CPR on the way to the hospital, intubated her when they arrived and got a pulse back.
It really all started on Tuesday night with a case of diarrhea. On Wednesday morning, she woke herself up around 5:30am and would not go back to sleep. She spent the entire day being incredibly cranky and fussy. She would nod off for 15 – 20 minutes and then wake herself back up and start to fuss all over again. She was only happy when she was being held and patted and even that didn’t last long. Around 4:30pm, I decided to call the cardiac floor and get some advice. We went over the symptoms and the nurse I talked to thought that it sounded like a bug that was just working itself through and told me that if the diarrhea got worse to make an appointment with our pediatrician the next day. When Jess went to bed around 11:30pm, she was still going strong and finally at 4:30am, I woke Jess back up and asked her to take Lily so that I could get some sleep. She tried everything she could think of to keep her calm. We even discussed taking her to Sick Kids emergency but I thought that I should sleep for at least an hour before trying to make rational decisions. In the meantime, Jess decided to load Lily up in the stroller and take her for a walk. Lily slept through most of the walk, but then got fussy again as they were reaching home. Jess picked her up from the stroller and put Lily on her shoulder, as she always does and by the time they got upstairs and Jess put her down on the change table she was done – her eyes were rolling back in her head, her respiration rate was about 1 breath every 5 seconds and her pulse was barely there. Writing it now makes me realize how much I remember, which I think is pretty impressive because it feels just like a blur.
While Jess was at the hospital, I had just enough sense to walk upstairs, get dressed, find my wallet and my keys and then wander aimlessly looking for my phone, before I snapped back into my own brain and walked out the door. I met the police there and answered a few questions, before they moved me into a squad car and got me there faster than I have ever gotten anywhere before. When I walked into the emergency room, she was surrounded by so many people, but I could see that she was fighting the ventilation tube and that sight gave me more hope than I knew was possible. Jess and I got surrounded by social workers and child life specialists who continued to follow us around to make sure that we were okay and oddly enough between bouts of tears and speculating about how this had happened, we were okay – at least stable in our own sense.
Sick Kids sent a transfer team so that she could be moved back there. It took them about half an hour to get her prepped and we kept answering random questions from a bunch of random people: doctors, police, nurses. At one point, Jess had a police escort take her home to grab Lily’s health card, pick up a few essentials and let the dog out. By the time she came back, the transfer team were ready to move Lily and so Jess and I got back in the cop’s car and they put Lily in the ambulance and we took off. We drove, with the sirens on and cleared the way for the ambulance behind us. A few cop cars on the way down cleared the traffic for us so that we could make it along Bloor Street even though the traffic was horrible. In less than 10 minutes we were out of the cars and on our way upstairs to the PICU.
A chest x-ray, blood and urine cultures, and an electrocardiogram later, the doctor’s are leaning towards an infection. The idea being that the infection caused fluid to build up on the upper right hand side of her lungs (as opposed to the fluid that was around the left part of her lungs earlier), and that mixed with her trying to fight off this infection was just too much for her tiny body to handle. She was already so weak after going through her own surgery, not eating for so long and then adjusting to being back at home that her body just gave out. It’s not an entirely comforting thought, but it’s the best of all the options they ran us through, so we’re happy to take it. She’s staying in the PICU overnight, so we decided to come home for the night.
We’re both entirely exhausted and trying to filter out the sights that we had to see this morning so that we can crawl into bed, crash out completely and hopefully wake up to a much better day.