Quick and Painless

I smiled at Mama C today.  I decided that I had put the mom’s through enough trauma over the past 2 weeks and they deserved to be thrown a little bone.  So this afternoon, after a very enjoyable nap, I woke up, did a little stretch and threw a smile to the mom that was closest.  I thought it was pretty nice of me.

We’ve been meeting more of my medical team this week (Weekday’s are very different on this ward – it’s like there are really only people here during the week): my new resident, the neurologist resident, my physical therapist and my occupational therapist (who isn’t actually new, it’s my OT from the cardiac floor Lisa, who think I’m so cute that she just likes to follow me). I’ve been having lots of tests done: they’ve checked my ears and my eyes, made me wear a holter monitor to check my heart and they started to take me off some of my monitors because they think I’m stable enough (the mom’s don’t necessarily agree, they still want to bring the monitors, and a defibrillator, home with us). I’ve been having some trouble with eating and it’s taking me 1.5 hours to drink just 75ml and I need to eat every 3 hours, so really that’s all I’m doing lately. When they try and speed up my eating, I get a very upset tummy and I cry a lot and my poops get really runny. The solution is that I need a G-tube much sooner than they thought I would and Lisa the OT, is really pushing for it to happen faster but there’s a big wait list for this surgery so while it would be great if it could happen while I’m already here, it doesn’t look like that’s actually going to happen. This does make the mom’s a little nervous too though because at the hospital my food goes through my Ng tube with a pump but at home the mom’s feed me by gravity and so they’re hoping to get a pump for at home too so that it’s one less thing they have to worry about. They’re not quite sure how to make it happen, but they’re on a mission.

Moving on Up

I really am a trickster. The mom’s keep saying that if I want to learn a new trick that I should take up something like skydiving or swimming with sharks – you know, something safe. They also say that if I really miss Sick Kids that they’ll just bring me for a visit; that I don’t have to hold my breath until I get what I want. The truth is I don’t know why I’m back here but it sounds like I’m doing okay.











I finally really woke up yesterday. Between the sedation drugs for my EEG and MRI and trying to get my seizure medications working I had been pretty out of it. But when I woke up yesterday I started to feel more like myself – although a crankier version. I did wake up to a nice surprise though: the nurses in PICU had been laughing at my pigtails because they were done with actual elastics so one of them stopped by and dropped off a package of new hair elastics! So after my bath, where Mama C cleaned off all of the left over tape from the ventilator and CPAP mask, she used the new elastics to make all new pigtails.

The doctors in PICU decided that because I didn’t need any more help breathing and it had been almost 48 hours since my last seizure it was time for me to give up my PICU space. The only issue was that they didn’t know where to put me. At first they thought I would go to the cardiac floor, because that’s where I always go but they only had room for 2 kids and technically my heart is fine. In the end they decided that I would go upstairs to the general pediatrics/complex care area so that I can have 1 doctor who will coordinate all of my care: cardiology, neurology and GI. So, yesterday afternoon they pulled my chest tube out and I said goodbye (hopefully for the last time) to the PICU. Mommy had insisted that Mama C take the afternoon off because she hadn’t really left my room for more than an hour since we got here, so she and I (and then Tricia too) got settled in my new room, met my new nurse and then Mommy said goodnight – the mom’s weren’t expecting me to move so soon so they didn’t have any of their stuff. It’s nice here and I’ve already had visitors! Theresa and Jason brought my Joey to play and 2 of my favorite nurses from the cardiac floor came by to make sure I was okay too.

We don’t know how long I’ll be in the hospital still. The nurse told Mommy last night that if I keep doing so well that I might be able to go home this week but the mom’s didn’t look too happy about that. The doctors don’t know exactly why this all happened and have yet to share their theories with us so the mom’s don’t really want me to go home until someone can tell them that they’re confident it won’t happen again or until they get a monitor and/or a defibulator. They also haven’t really had a chance to talk to the neurologist to figure out how we treat my brain injury – do I go to rehab or is it not so bad that I could just go home and keep working with my OT? I have been having trouble making eye contact, although I will try and look at you if you are in my line of sight. I can’t track anything with my eyes either, which really makes the mom’s worry because I was really good at that before my brain had no oxygen. But the mom’s are trying to be optimistic and so I will try and be too.

Another Day, Another Trick

I know you have all been so supportive and amazing with Lily so I thought I would blog a quick update since I may not get another chance for a bit.

Lily had been doing well (as well as expected) after our event on thursday. They
had pulled her off the ventilator but still needed a little oxygen help but
overall the doctors were happy if not still unsure about what caused everything.

Yesterday however, Lily started having seizures. They started randomly and only
lasting 5 – 10 seconds but by the time they did an EEG at 3pm , it showed that she had 5 seizures in 30 minutes, some lasting as long as a minute. They
ran a CT scan last night and the report was not so great: her brain is swollen and there are signs of injury that were caused by the lack of oxygen to the brain while she was in cardiac arrest.

They are not able to tell yet how significant the damage is – although she will
have an MRI in the next 24 hours to help determine the exact area of the
damage.  They started her on seizure medication last night and she hasn’t had any seizures since then. She’s made, what we think, is a little eye contact
today and has grasped our fingers a little bit. There’s no way of knowing
what this means for the long term but these are certainly good signs.

So, if you haven’t used them all up, please keep sending those positive thoughts
and hopefully soon we can update with actually positive news soon

A Better Day

What we have learned today is that Lily is a mystery.  There is no obvious, jump out at you, reason that she went into cardiac arrest.   That, as you can imagine, was not the most reassuring sentence that we heard today.  If they’re not sure of the reason, then how on earth can we go home feeling reassured that it’s not going to happen again?  While I know they’re not going to pull the ventilator and send us on our merry way tomorrow, it certainly gives us reason to pause and put into perspective the terms we’re willing to leave the hospital on.  The doctor supervising Lily’s care today was very blunt with us and told us, in no uncertain terms, that they may not be able to fully figure out exactly what happened yesterday morning….unless it happens again and they’re on hand to actually assess the situation as it happens.  Obviously, this is not something we’re aiming for as we never, in a million trillion years, want that episode (that’s what they call it at the hospital – an episode – it sounds much nicer than “almost dying”) to happen again.  So for now, the plan is to start from the top of the most obvious reasons and try to rule them out as they watch her closely.

They inserted a new chest tube today (for those of you counting, that’s now 3 chest tubes) with the help of IGT (Image Guided Therapy) so that they could actually see that it was going into the fluid pockets that are on her left side.  The doctor doesn’t think that the fluid pockets were a contributing factor to the cardiac arrest but again, they want to get rid of them so that they can rule it out.   She hasn’t had a  fever and the cultures that are coming back are not showing any signs of infection that they can test for, but since those were the two most obvious possibilities, we’re no closer to getting to the bottom of this then we were yesterday.

We have realized though that we really and truly are supported by so many people.  The outpouring of love that we have gotten through facebook, this blog, calls and visits is incredibly overwhelming.  Even at the hospital we have run into several of the nurses or parents we’ve gotten to know and they’ve all been heartbroken for us when will share the story and find out why we’re back.  It’s certainly the bright point in a pretty bleak week.

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.

Missed Me, Missed Me, Now You Have to Kiss Me…

It’s been a few days and I’ve heard some rumblings that people are missing me and my posts.  I’m really sorry for the delay, but I have been really really busy getting all settled back at home! It’s true – on Saturday morning the awesome nurse practitioner, Erica, woke me up early and sent me downstairs for one last chest x-ray.  After the surgeon had a chance to look at it, they decided that my effusion looked small enough (finally) that my body could probably just absorb the remaining fluid because it obviously wasn’t coming out of my drains anymore (there was just a teeny tiny bit coming out of both tubes).   The mom’s were a bit nervous because they weren’t really expecting it to happen so suddenly.  It turns out that the information they had gotten before was a little mixed up: instead of starting on steroids right away, the doctors decided to see how I reacted to having food in my tummy – to see if the fluid would stay down or would start collecting again – before trying the steroids.  In the end, they were really happy with me and that meant letting me go home.

I obviously had to get my chest tubes taken out first, but after all I had been through, I handled it like a total and complete champ.  They gave me a little morphine and my little pink bunny and went to work.  The only time I even cried a little was when a little skin was stuck to one of the stitches holding the tubes in place, but as soon as that was figured out, I stopped crying and out the tubes came in just under a minute.  It was the best feeling in the whole entire world! Mama C looked so so happy the whole time (and the nurses were very impressed that she even stayed in the room).  Mommy had decided to go for a walk and get the rest of my bravery beads (I have a lot of them now) but when she came back, they both got me dressed in my pretty white dress and purple headband from Natalie (because everyone needs to look they’re best when they’re making an exit) and we only had to wait 20 more minutes before I said goodbye to Erica and Vari and we walked out the door (but not before the mom’s got one last starbucks).

The mom’s were a little worried that it would take me a while to get settled at home again but they really should have known that I’m the most impressive little girl and so far it’s been okay.  I had a bad night sleep on Sunday night; I was awake from 2am until 6:30am and just wanted to hang out with Mama C, but last night I was back to sleeping through the night.  I’ve had 2 bath’s with my all fixed heart and I like it so much better than before.  Before my heart was all fixed, I got cold very easily but now it’s easier for me and as long as I stay wet I don’t cry at all.  My hair got longer while I was in the hospital (I think it’s because I was sleeping so much and growing while I slept) and now Mama C can put it into pigtails….I don’t know how I feel about that yet, but I’ll let her play for now and get her fix in before I’m older and can tell her to stop.

I’m still a little bit weak from all of the lying around that I did for 23 days (the mom’s say that’s a long time) and so I’m having some trouble holding my head up and my arms are weak too, but the mom’s are working with me to try and build up my muscles again.  I’m also not eating as much as before because 8 days with no food means that my tummy shrank and shrank and they need to build it back up slowly.  So, right now I’m eating 75mL every 3 hours (which makes it feel like I’m eating all day long) but hopefully soon I’ll be able to go back up.  I haven’t even puked yet since I came home and I think that’s a really good sign.  Before we left the hospital, a new OT came and met with the Mom’s and taught them how to start giving me food in my mouth.  We’ve started small – I tried a bottle but I didn’t really understand what to do with it and it made me choke a lot, so the OT said that it was okay if I didn’t get the bottle and we started working with some apple sauce or rice cereal and lots of different ways for me to get it in my mouth.  The mom’s sometimes put some on their fingers or my thumb and I suck on them (it’s messy and fun), and sometimes they use a spoon and kiss my lips and the insides of my cheeks so that I get used to the feeling of food being in my mouth.  They know that it makes me very nervous and I gag a lot, so they’re not putting any pressure on me and as soon as I start to get upset, they stop and we try again when I’m ready.  The mom’s also understand that it’s probably going to take me a long time to learn how to eat food AND to get enough food in my tummy to give me all of the nutrients that I need to grow big and strong, so I will still need a G-tube for at least a little while until I master this eating thing.  I’ll see the G-tube people in about a month and then it will take another 2ish months before I can have that surgery, but I’m not really in a big rush to go back to Sick Kids for an overnight stay.  Until then, after seeing the hearts that the nurses made at the hospital, Mommy had decided to start making different shapes for my face tape – so far I’ve had a hippo, a butterfly and the Batman signal.  From what I hear, there’s already an elephant, a crocodile and something called a Harry Potter symbol still to try out.

So, in the end I’m home now and it’s summer and we have some big big plans! The mom’s keep talking about places like: Ontario Place, Centre Island, Marineland, Riverdale Farm, the beach and the wading pools, so I’m excited to figure out exactly what all of those words mean.  I think we’re going to have a lot of fun!

No News is….No News

It’s been a few days since I’ve had a chance to break free of my very busy schedule of sleeping, going for walks around the 4th floor and sitting in my bouncy chair, to update but now that it’s 11:11pm at night and I’m still not even remotely sleepy, I thought I’d take a moment to say hello.

I had been hoping that after 7 days of NPO (that’s right, 7 days without anything in my tummy) I would be able to tell you that the fluid had all cleared and the doctors were going to take out my last 2 chest tubes.  Unfortunately, even though I’m obviously feeling much better (I smile for the mom’s all of the time) and the front of my chest sounds much better, the chest x-ray I had on Monday still shows a bunch of fluid that hasn’t drained yet.  Everyone had been a little excited over the weekend because less and less stuff had been coming out of my drains and they thought that going NPO had worked, but that doesn’t seem to be the case.  From what the mom’s understand, this now means that while they’ll start feeding me again, the have to move on to the next step in treating my Chylothorax, which is 5 days of a steroid treatment.  I’m happy about getting to eat again(because it’s really painful to not have anything in my tummy because it’s shrinking and the cramping makes me cry really hard – the mom’s definitely think that’s been the hardest part so far is watching me hurt so much), but I’m also really hoping that the steroids finally do the trick because otherwise the last step is a new surgery to go in and fix my broken vessel but it’s more risky and I don’t think I really want to do that.

Otherwise my weekend was kind of fun (besides the tummy pain, which lasts about an hour and then I fall asleep from crying or the morphine).  My nurse, Vari,  was the nicest one yet and the mom’s really really liked her.  She helped the mom’s give me a bath (because I was getting to be known as the stinky kid on the floor!) and figured out how to sit in my bouncy chair AND even hook me all up to my stroller so that the mom’s (and my i.v. pole) can take me for walks.  The nurses won’t let me leave the floor because of my chest tube (even though Mama C knows all about something called REDS – she says it’s a lifeguard thing) but there are two bridges and the elevators to watch, so it’s not really so bad.  Mommy keeps joking about trying to pack me up and take me home when we go for these walks, so now Vari and two other nurses, Cathy and Summer, keep a close eye to make sure that we’re not escaping.  Luckily they seem to know that Mommy is kidding and they laugh a lot.  Vari told the mom’s that everyone around here remembers me from when I was teeny tiny because of the fact that I was all by myself and everyone is so so happy that I found my family.  Vari said that when I was first here, she took care of me a lot and even spent some of her extra time coming to sit with me so that I could know that I wasn’t alone.  A lot of the nurses tell the mom’s that they really like our family and during the day lots of them pop in and say hello to me and just make sure that I’m still as adorable as always.  Even some of the doctors come by just to say hello.   This hospital isn’t my favourite place to be, but it’s still pretty nice to be adored.

Can 2 be considered a streak?

I’ve had 2 good days in a row.  The mom’s are really happy about that.  Wednesday was absolutely my best day – I was in almost no pain, I was happy to just hang out and watch everything and I even smiled more than once!  I had some visitors – Grandma and Grandpa surprised me and so did my Theresa and all of them were really happy about how much better I looked.   I was even doing such a great job breathing that they took my oxygen nasal probes out just before I went to bed for the night.  I let Mama C sleep for almost a whole 6 hours (even though I had a bit of a rough period where my chest tube stopped draining and it got a little harder for me to breathe) before I woke her up because the nurses were giving me my morphine and I don’t really like the way it feels going into my veins.

I had a bit of a cranky morning and my oxygen levels dropped again, so the nurses had to turn up my oxygen again for a bit.  I also made my skin go all mottled, so they decided to send me for a chest x-ray to see if my tube is kinked worse than a few days ago or if the drains and not eating are actually working and the fluid is getting a little bit less.  I don’t really love getting chest x-ray’s done.  Most of the time they bring the x-ray machine up to me and I don’t have to move a lot, but today they wanted a really good picture so I had to go downstairs and sit in the tube.  I was very uncomfortable because the chest tubes were getting a bit squished but the nurses had given me a little extra morphine and I didn’t cry at all.  Mama C was so proud of me and told me that I was a rockstar (she’s been saying that a lot lately).

I had 2 more visitors today.  Jason came to see me in the morning and let Mama C take a break while he sat with me and sang me some songs.  He stayed until my cousin Connie showed up all the way from Brantford!  I had met her at the baby shower, but we didn’t really get a chance to hang out so it was fun to see her today – and she brought me some socks that she made!  She did come just after they gave me some morphine so I slept for most of her visit, but at least I wasn’t crying so obviously I was trying to make a good impression.

Mommy showed up later in the afternoon and all three of us hung out for a couple minutes before Mama C went home to take a nice long break.   I was a bit cranky for Mommy in the afternoon, but then she surprised me and brought out my bouncy chair!  Finally the nurse turned off my oxygen again and I’ve been doing much better and the oxygen has stayed off all night.  Hopefully this is a sign that I’m heading in the right direction but I guess we’ll know more when we see the doctor again tomorrow morning!