Time Heals

Time is a funny thing.  For the past few weeks Jess and I have been constantly reminding ourselves that “time heals” – we knew that we just needed to give Lily and her body some time to get over this bout of…well, whatever it was.  And of course we were right, but those weeks felt long and it was sometimes hard to keep focused on the light at the end.  But, as all of this was happening, I woke up one morning and realized that, for the first time, I had missed the anniversary of Lily’s cardiac arrest.  Although I will never hear the date “July 15th” without knowing what it means in our lives, July 15th came and went this year and it wasn’t until it was over that I realized that it had passed us by.  And that’s the joy of time – sometimes it really does begin to heal you.

photo 3

I feel that a lot of this year has been spent moving forwards.  Not only has Lily’s development moved in leaps and bounds, I think that this year has given me the chance to start moving forwards as well.  In April we had an event at work where a patron died suddenly and being involved in that situation threw me for a bit of a tailspin.  It brought me to the point where I questioned whether staying in my current career was the best decision for me, if I would ever be able to be involved in the kind of situations that we deal with and actually do my job without it causing this same type of reaction. I felt weak and humiliated.  But then someone said something that truly and completely resonated with me; she said, “things may not get better, but that’s okay.”  For the first time, I began to accept that  I may never be able to react the same way to an emergency situation: I may always get anxious and I may always have a day or two afterwards that are really hard, but that’s okay.  This may just be who I am now and that’s okay.  For all of the times that I’ve said it about Lily, I’ve never given myself permission to accept it about myself.  We’re not perfect people – our past experiences shape and define how we react to future events and for me, this means accepting that while I can deal with an emergency while it’s happening, it’s more than likely that I’m going to have a rough reaction once it’s done.  By knowing and embracing that fact, I can now focus on how to get through it the next time – showing myself the same kindness and patience that I show Lily.  It may not get better -it may just be different, and that’s okay.

photo 2

Today is Hard

I’m walking around in a fog – or worse, on the constant edge of tears.  Every time I allow myself time to just stop I end up back there and I can’t tear myself away.  I know that I’ve joked in the past about my PTSD state post Lily’s cardiac arrest.  I know that I’ve talked about how I feel like a failure to her and to myself when I think of how I couldn’t perform CPR on her.  How I landmarked her tiny chest, twice and both times placed my hands on her chest – first my two fingers because she was just a baby and then a full single hand because I knew that it was going to take more force than 2 fingers to get through her broken sternum, but then I stopped.  I couldn’t push down, I panicked and just stared at my hand, willing myself to push down and I couldn’t.  Since that time, I’ve started to move past that: accepted that it happened, this is the path that our lives took and there is no going back, no changing what happened. Knowing that all I can do is spend the rest of my life making that up to Lily – to make sure that I give her whatever support and chances I can to help make up for the fact that my inaction sent her life down an entirely different path than where it was going.  The nightmares haven’t come in a while, I haven’t been caught up in the cycle of thoughts that I could get trapped in, I could hear a siren and not automatically think of that day.

But then this week I had to deal with something that brought me right back there.  I wasn’t really involved, I was around for the aftermath and trying to just offer support to the people who were actually had to deal with it.  And for the first few hours, I was good – adrenaline kicked in and not even consciously, I refused to allow those thoughts to come to the forefront.  I did everything that I could do.  But then I stopped.  I took 5 minutes to breathe and there it was: the guilt.  The guilt that breaks me.  I was so proud of the people I was with – they were incredible and did everything that we’re supposed to – they acted.  But that was the trigger for me: they acted and I didn’t.  They did it right and I didn’t. I didn’t act and Lily is the one who has to live with those consequences.  I didn’t act and now Lily has a brain injury that affects every single thing she does.  And yes, she’s making gains and she’s healing from that and her brain is incredible and making these new pathways, but if I had acted would that even be necessary? Would I have been able to give her brain just enough blood and oxygen to avoid this? Would she be walking now, eating now, talking now? And so every time I stop in the past 48 hours, that’s what’s there: playing those moments over in my head, seeing those incredible paramedics running with her in their arms, hearing Jess tell me they were still doing CPR when they took her out of the ambulance, 3 days later when my co-worker had come to visit and she touched my arm: “is she having a seizure?”.  Those 5 words that changed everything.

Yesterday, I sat down and saw the people who acted.  I see how upset they are and how they’re trying to find some comfort from all of this madness and I want to give it to them but I can’t.  Who am I to offer them comfort? They should be applauded and praised for how incredible they were and I want to tell them that.  I want them to know, know with every fibre of their being, that they were amazing.  I feel like a fraud sitting in a room with them because they were perfect and I am the example of what you shouldn’t do.  They are struggling with something that is happening right now, but I’m stuck in the past.  But comforting words mean nothing when you can’t get the images out of your head.  My own thoughts, my own guilt, my own memories overtake anything that anyone else says.  All I hear is my own voice telling me that I failed, mixed with the voice of an old boss, who has said to our staff a million time: “if you don’t act, you are going to have to live with that for the rest of your life.” He’s right, this feeling will never leave me. I understand the want to provide support, to be kind, to be reassuring, but my brain doesn’t accept it.  And I remember people saying these comforting things to me after Lily’s cardiac arrest and I wanted to yell at them to stop talking – they had no idea what they were talking about.  I hated the phrase, “you did everything you could,” because it was a lie, a kind lie, but still not the truth.  And while I know that if I said that to these people, it wouldn’t be a lie, I don’t want them to feel the way that we did.  So, I just keep saying, “you did good” and hope that someday they hear that.

And I know, I do know, that I have to force myself to get back on track.  I need to put the past back where it belongs and focus on today.  I can’t change what happened.  I can only focus on how to move forward, how to help Lily move forward.  But today that is hard.  Today there are too many tears, too many “what if’s” and too much guilt.  But tomorrow, tomorrow can be different.

6125259614_67d17bbcf4_b

 

Happy Heart, Happy Birthday

Cardiology came and went.  They sedated, they scanned, they saw, they pronounced her heart strong and her lung pressures stable.  They said to come back in a year.  It was music to our ears.

IMG_0198

There was a moment, one breath-holding, heart stopping moment.  While Lily was conked out from the sedation (which was rare in itself, normally she does not sedate well and wakes up part way through) and the ECHO was happening, the technician stopped and walked away to make a phone call.  The last, and only, time that`s happened, was the day they found the blood clot on her triscuspid valve and everyone went into panic mode.  Shortly after, the nurse came over and retook Lily`s blood pressure.   Suddenly it was as though everything was swirling in front of my eyes, but no one was saying anything.  The nurse was speaking to me no differently than she had been 10 minutes before when we were laughing at Lily`s snores.  The technician didn`t come back, but they did her EEG and then sent us on our merry way.  But that whole time, I was  on guard: what had they seen, what was Dr. Dipchand going to tell us when we finally made it into her office.

IMG_0193

And it turns out that she didn`t tell us anything, because there was nothing to tell.  My own PTSD-inflicted panic was exactly that – just my own brain playing tricks on me.  In fact, Dr. Dipchand started the appointment with, “So, I hear she`s fabulous.` Let me tell you, those are GREAT words to hear at the beginning of the scariest appointment of the year.  But she`s fabulous – the heart repair still looks amazing, and her lung pressures, which are our biggest concern, are wonderfully low.  Dr. Dipchand banished us from her office for a year, unless we start seeing symptoms that give us a reason to be concerned.

IMG_7486

And so now, we party! The nice thing about cardiology is that her December appointment always lines up nicely with Lily`s birthday party and gives us an extra reason to celebrate: not only is she 3 but she`s a healthy 3 year old!  That is certainly a cause for celebration in our eyes.  This year, we`ve been feeling especially thankful about Lily`s development in general: she`s eatting more, she`s finally starting to babble and talk, she`s actually finding things funny and laughing at them, and she`s stronger and making huge physical strides – 2013 was just a year of leaps and bounds for her and we`re so grateful for that gift.  So, to pay back some of the karmic goodness that has come our way, we thought we would use Lily`s birthday party to give back to Sick Kids.  We`ve asked each of her guests to bring an unwrapped toy for the Sick Kids toy drive.  It`s just a little gesture, but the memory of living at Sick Kids, of being isolated from your family and friends and living in your own little hospital room bubble will always feel fresh in our minds and the thought of any family having to do that over Christmas is hard to think about.  Somedays it`s hard enough to get downstairs to get something to eat, let alone getting enough time to go shopping for gifts.  And for families with more than one child – to have to balance it all….it`s overwhelming to even consider.  So, hopefully the toys that we`ll collect and drop off will make someone`s life just a little bit easier, so that they can actually focus on enjoying the time they have.  Because sadly, as we`ve seen this week with the passing of Little Joe Sargeant, sometimes you don`t get a lot of time and all of it needs to be in that room.

If you had followed Joe`s story at all, then this plea will be familiar, but if not, then please take a minute….

Joe was born with a heart condition called Hypoplastic Left Heart Syndrome (HLHS), which is essentially half a heart.  For months he fought while waiting on the transplant list, hoping that a new heart would come in for him.  Sadly, at 6 months old, he decided that it was time to rest and he passed away early yesterday morning.  Throughout his fight, his family have been pushing the awareness for organ donation, in hopes that, even if a heart couldn`t be found for Joe, that other families would see thier loved ones saved.

Obviously, this story hit us very close to home, as there may come a time in Lily`s life where she will be the person on that list, so we`re asking you to take a little time and consider registering to become an organ donor.  Becoming a donor is so easy – all you need is your health card and 5 minutes.  This one decision, could help to save the lives of up to 8 people.  I think that`s a much better way to spend 5 minutes then, I don`t know…reading a blog entry 🙂  Think of it as a birthday gift to Lily!  And you can do it right now (seriously, right now) by just clicking on this link…..

Be A Donor – Do it for Lily!

IMG_7635

Push Hard

A mom post tonight…

I love my job. I really and truly do. Like becoming a mother, it was the one thing I always knew that I wanted to do. I would spend my childhood summers planted at the pool and when asked I would tell everyone that I wanted to be a lifeguard. To take that childhood passion and actually be able to parlay it into a career has been one of my most joyous accomplishments. I get a satisfaction and fulfillment from work that I don’t get anywhere else

Only recently have I discovered a downfall to this job. Since Lily’s cardiac arrest I have struggled with PTSD (post traumatic stress disorder) – especially at work. I’m in an environment where our main goal is to ensure that our staff are ready to react in a moments notice and to react to the highest standard. It’s what I’ve been doing since I was 15 years old, as a lifeguard myself, a trainer or a programmer.  And every once in a while (and more often than I would like), we end up talking/hearing about situations that have happened at one of our sites – we come together and talk about how it went and what could be learned and taken away. These moments now fill me with dread. As soon as people start talking I can feel myself get clammy and cold and my hands start to shake. I try to take deep breaths and calm myself down, I even leave the room to try and keep it at bay,  but I’m always brought back to the moment of Lily’s arrest and knowing that I failed her – and myself. When someone stands in the front of a room and tells us that EMS says that we can “never push hard enough” (during CPR) I’m filled with guilt – knowing that I couldn’t push at all. And even though I know, in my head, that I’m the only one thinking it, I can’t help but feel as though If I were to repeat my story to this group of co-workers, who all share the same common work goal, all they would see is failure.

PS – I know that it’s one day after Adoption Day and I should still just be reeling from happiness but sometimes that’s the downfall for sharing this journey with us – there are ups and down’s and they come whether we like it or not.

Where I Leave Off

One last mom post tonight before Lily returns and tells you all about her “re-birthday” party, her trip to neurology this week and our big plans for the rest of the summer. But until then….

Most of you know that Jess and I are very different – sometimes as different as two people can be. While undoubtedly frustrating in certain situations, it comes back to reward us in the most unexpected ways and I realize that it’s a gift. Today, was one of those days. Today, I opened my email and read this:

July 14

I remember everything.

Every single detail of that morning.

You woke me at 4:00am. I tried to put Lily back to bed. Twice. I held her for about 20 minutes and then lay her down each time. She would last about 15 minutes before she would wake up screaming. Finally, around 5:30, I went to the washroom and you came in. You spilled Omeprazole all down my leg, and we laughed about it. I had no clean clothes, so medication-soaked clothes were what I was stuck with. I took Lily downstairs and swaddled her to put her in the stroller. Immediately, she was asleep. I walked for about an hour and a half before she awoke. She woke up screaming. I walked down Plains Rd. in front of my old elementary school holding her while she screamed. I jokingly told her, “Lily, if you don’t stop crying, I’m going to strangle you”. I would come to regret using that phrase shortly. I finally put her down in the stroller and started walking quickly home. I decided then that I would let you sleep for another couple of hours before we took Lily to Sick Kids. Something was very wrong. As we walked down our street, she fell asleep again, and I noticed a neighbour’s unusual flower in front of their house. That crazy purple one that is round and has antennae all over it. I stopped the stroller and took a photo with my phone. Stopping woke her up. I picked her up with my left arm and brought the stroller in with my right. I left the stroller downstairs and brought her upstairs. She was absolutely alive at that point.

When we got upstairs I took her from my shoulder and went to put her down on the change table. Her face was white. She wasn’t moving. Her eyes were closed. I tried to shake her awake, and then tried yelling. Obviously, neither worked. I screamed for you. I said the baby wasn’t breathing and that you had to call 911. I yelled twice, and you were there, handing me your phone. I was holding Lily face-down in my hand and had slapped her back. I still didn’t know that she was dead. I told the 911 operator, “My baby is not breathing”, but I actually kind of thought that she still was. You had her on the change table when the operator asked me if we were doing CPR. I said, “We can’t do CPR, her sternum is still open”, when you corrected me and said, “Her sternum is not open, don’t tell him that.” And I told him, believing with everything that I am that I was right, “We can’t do CPR – her sternum was just closed because she just had an AVSD repair, and we are still not allowed to even pick her up by her arms.” Then I thought about what it may be and said, “The AVSD was complicated by chylothorax, and she has several plural effusions around her lungs and heart, so she’s going to need a chest tube. Can paramedics do chest tubes? There must just be too much fluid. They’re going to need to insert a chest tube”. As I was speaking, all I could imagine was you doing a chest compression and Lily’s sternum snapping and you pulling out her heart on your two fingers. I truly (although, wrongly) believed that doing CPR would do more harm than good. The dispatcher asked me to open all the doors and put the dog away, all the while repeating, “There is so much help coming. Just hang on. I have so many people coming to help you. They will be there so soon.” And they were. The firefighters arrived first, parking two trucks across O’Connor, and blocking traffic in both directions. I was outside when our nosy neighbour from across the street popped her head out of her house to ask if everything was okay. I just said, “No” and walked back inside. I couldn’t even deal with what was going on upstairs, so I did the next best thing which basically involved me hyper-ventilating at the bottom of the stairs. I quickly composed myself, and went outside, only to have you go running past me to the paramedics that had just arrived, and telling them that the firefighters needed them upstairs – now. One went up, and right after that one of the firefighters came flying outside holding Lily stretched out in front of him to the ambulance. You looked at me and said, “Go! I’ll meet you at Sick Kids”, so I did. I still didn’t think that she was dead. There was a cop blocking off the top of Northbrook at Cosburn, and we sped around the corner over to Coxwell, and down to the hospital. There were people outside to meet us – just like on ER. I got out first and when they pulled the stretcher out of the ambulance, I saw what I hadn’t been able to grasp earlier – she was dead. They pulled the stretcher out, and the paramedic was straddling her, doing those chest compressions that we had been so terrified to do. In that moment all I thought to myself was, “Oh my God. She’s dead. They don’t do chest compressions if you’re not dead. She can’t die first.” I was escorted into the hospital by a cop and as soon as we were in the room, a child life specialist was by my side. Apparently, when your baby dies, they don’t like to leave you alone, so I had this lady following me and interrupting my pacing while I was trying to phone and tell you that we weren’t at Sick Kids and to not go there. You weren’t answering your phone, which was stressing me out more, until finally the lady said to me, “Look, I am very concerned about you right now. You need to sit down – please”. So I did, and tried calling you again – and felt your phone vibrating against my leg. I had used your phone to call 911, and just put it in my pocket. The Dr. that brought Lily back to us is a marvelous woman that we had previously met, and once she had a pulse I see Dr. P. looking at her face and saying, “I know this girl. I know that I have seen her here”, before scanning the room and making eye-contact with me and saying, “I remember you – you’re the adoptive mom”, and leans back down to adjust something on Lily. One of the nurses hands me the pajamas I had put on her to take her for a walk earlier – my favourite ones with reindeer. You arrive and I tell you what the child life specialist (and now a social worker), have told me (which, is unfortunately not much). After Dr. P. has called Sick Kids and made sure that Lily is stable, she walks over and hugs me. After she leaves, I notice all the police in the room. And there are LOTS. I lean over to you and say, “Crystal, do you think that all these cops are here because they think that we did something to her”? The social worker hears me and says, “Oh, no, no, no. This is just what has to happen.” That calms me, because I can’t imagine the rage I would have if someone actually accused me of intentionally hurting Lily.

When it’s finally decided that we’re going to Sick Kids, I decide I should go home to get some stuff, let the poor dog out, and take my car to meet you and Lily at Sick Kids. When I asked the one policeman (that ended up staying with us all day) if I could leave to go home in a cab and get my car, he actually laughs at me and tells me that he will drive me home. On the way, he kept saying things like, “I can drive you guys to Sick Kids”, and, “If you need, we can give you money for a taxi home”. This is when I realized that he didn’t want me to drive, but probably also didn’t want to argue with me if I was going to disagree.

When we got home, two cop cars are outside. I go upstairs and head right to Lily’s room. On the floor is the electrode pad for the AED, and the rest of her room looks like a disaster area. Her mattress is upturned, furniture is moved, and it is just a big mess of dis-array. All I can think is, “What the hell did Crystal do? Why on earth would she have moved all this crap?” On my way back downstairs I decide that I probably shouldn’t drive, and have my policeman take me back to East General. When we get there the Sick Kids transfer team is getting ready to take Lily, and you and I get into the cop car. After getting in the car, our officer goes over dispatch and says, “Good news – our baby girl is okay. Stats are stable and we are transferring her and her parents to Sick Kids now”. The dispatcher comes back on and first I hear some cheering before she says, “We are so relieved to hear that. Can we offer you any assistance?” I have no idea what this means, but he says back, “If there’s anyone in the area that can help, we would really appreciate it.” She tells him that she’ll, “see what she can do”. We lead the ambulance (both of us had lights and sirens on), south on Coxwell to make a right on Danforth. We are cruising at a good pace, until we start to hit the traffic at Broadview, and I realize the light our way is red. We end up driving on the left side of the street and all I hoped for was that people in the opposite directions would stop; however, I realized then that there was a cop standing in the middle of the intersection keeping it closed. Before we were even through it, that cop is back in his car, speeding off in front of us. This happened at every single intersection along Bloor until we hit Bay, and then all along Bay they were holding intersections. None of them even knew Lily or either of us, but here they all were wanting to make sure that she would stay alive. By the time we got to Sick Kids, there were four other cop cars around us, taking turns driving ahead to intersections that weren’t already being held. We slowed twice for jay-walkers, but not once for a car being in our way. When we arrived at Sick Kids, again we had an entourage waiting for us to whisk us up to PICU. And thus began the longest 44 days of my life (and probably yours).

I remember everything.

I will be your memory.

A Mom’s Look Back

A mom post tonight….

The pyjamas she was wearing are still in Jess’ drawer.  I don’t remember when they came off – if Jess did it before I got to the room, or if I pulled them half off to stare at her chest.  There are nights when I can’t close my eyes without seeing it – the newly sealed bones coming together to form a perfect, sharp, mountainous peak.  My mind pulls me forward, feeling my fingers trace the line between her nipples and then pausing.  Then tracing up the edge of her ribcage, placing my two fingers down and then stopping, thinking to myself that my fingers weren’t strong enough to push through this lump and get to her heart.

The memories of that day are so chaotic when they run through my mind – when I’m tossing at night, when I hear a siren drive by, when I’m sitting in a meeting talking about how we need to train our lifeguards to react.  It always starts with my hands on her chest, and then I remember the scream – I can still hear it.  Jess’ voice piercing through the sleep that I had just really settled into after being awake for so many hours – I have never jumped so fast – grabbing my phone and dialling for Jess, because I knew that it had to be me who stood beside her.  Then the memory jumps and I just see her face, and not even her face, but her eyes, those beautiful, almond shaped eyes, that I am constantly losing myself in, rolled so far back that I’m haunted by the image of them.  I can’t even picture them clearly, it’s just a flash and then my brain moves on.  It moves on to the siren, knowing that “so much help is coming, I’m sending so much help”, as the EMS operator told Jess.  I could hear it before I even registered what it was, knowing that it was coming for us.  I heard the footsteps and Jess’ voice and then I watched them take her from me.  I watched as they pulled out the defibrillator and began pulling the electrode pads off, and then I forget.  There is this blank gap in my memory.  I know that I went outside to guide the ambulance crew in, but I don’t remember getting there.  Then the rest is like a montage – short clips of information – watching the paramedics run past me, holding Lily and running faster than I had seen anyone move; Jess and I speaking in code, deciding she would be the one to go with our baby, and then another gap and I’m back upstairs, trying to get dressed and find my phone and then walking back out the door only to be greeted by 3 officers telling me that they needed to search our home.  I can see myself walking into the emergency room and there are just so many people but I couldn’t see Jess but I could see Lily and she was surrounded by bright lights and covered faces and machines.  I still couldn’t find Jess but I saw the doctor – our hero doctor –  the one who was with us on the very first night we had Lily home when we thought we had pulled the Ng tube – and in that moment I was calmed.  I finally got a good look at Lily and saw that she was trying to fight the intubation and for the first time I realized that she was alive and I almost dropped to the ground.  I was just cold and shaking and then I saw Jess and in that moment, we laughed….laughed…because she had my phone.  I remember driving on the wrong side of Bloor Street, being transferred to Sick Kids and really, truly understanding how horrible it is to be following an ambulance and not have people pull to the right.  But when we turned on to Bay Street and there were no cars, no other traffic except us and Lily in the ambulance ahead of us, that’s when I just kept thinking: if they closed Bay Street for us, then this is really bad.

There are times when I wish I could relive that day, which seems like an odd idea since it never leaves my brain.  I want to see it from someone else’s perspective – watch it as though I’m watching an episode of Grey’s Anatomy.  Because maybe, if I could see it like that, something would click and I would finally be able to realize what happened.  Right now it just feels like I’ve missed part of the story.  The main points are there but I’m missing the details – a bad dream that you’re scared of, but don’t remember exactly why. It doesn’t make sense to me that I can’t remember every single detail of the day that I never stop thinking about.  And maybe, if I could finally see how all of the pieces fit together, I could begin to let go.

The Worst Day

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.