Silly brain

I’ve had a very eventful time lately.  The mom’s asked me not to talk about it until now because we didn’t really know for sure what was going on, but now that we have a better idea I can tell you all about it.

A few weeks ago, the mom’s started noticing that I was having these little muscle spasms.  It would mostly happen just after I had woken up and was just playing on my mat.  They were always very quick (only about a second or two) and it seemed to happen when I was grabbing my feet, so at first the mom’s thought it was just me losing balance a little bit.  But over time (and especially when my sleeping got all messed up over the Christmas break) it started happening a little more often.  Sometimes it would just be one or two spasms, but other times it would be 7 or 8 in a row and they would get a little bigger.  The mom’s made a big effort to get my sleeping routine back in order and the spasms seemed to go away a little bit but they were definitely still happening.

Finally, last week my lovely pediatrician was able to get us in for a visit to Sick Kids for an EEG.  It was on Thursday morning and I had to wake up at 5am and then stay awake until the test at 8:30am because I had to be tired.   An EEG is a test where a nice technician measured my head, drew all over it with crayons and then put all these little stickers on my scalp that were attached to pretty coloured wires.  The wires were able to send pictures of my brain activity to the technicians computer.  The test lasted about 1 hour and I had to be sleeping, and then slightly awake, then awake enough to look at flashing lights and then asleep again.  Luckily Mama C was holding me the entire time so I was pretty comfortable and only cried at the end when she and the technician were pulling all of the stickers out of my hair.  After that we waited around until we finally got to see the neurologist who was able to explain to the mom’s what’s been going on.

It turns out that I’m having something called Infantile Spasms (or West syndrome), which are a type of epilepsy/seizure disorder.  Kids with Down Syndrome are more likely to have these issues then typical kids, but also kids who have had an Hypoxic-Ischemic brain injury are also more likely to have these as well, so it shouldn’t really be a huge surprise that I’m having issues with them, but it was.  The difference between Infantile Spasms and other seizures though is that my brain activity between the physical seizures is all still all wonky (as opposed to only being wonky when I’m actual having the spasms), which means that it can cause problems with my development. (The mom’s found a really good article to help explain it to them, so if you want to understand it better you can read it too:

All of this means that the doctors have to treat it very quickly and very aggresively so that we can stop the spasms and the wonky brain activity before it causes too much damage.  Luckily I have Down Syndrome though, and even though it’s more likely that we will get West syndrome, it’s all less likely that it will affect us as badly as typical kids so it’s actually really good that I have this extra chromosome (now it’s not just my cute chromosome but it’s my protective one too).   They’ve started by putting me on a new drug called Vigabatrin and they’ll check in two weeks to see if it’s working.  If it’s not then I’ll have to start a different drug that’s given to me everyday with a needle, so I’m really hoping the Vigabatrin works.  It comes with a lot of not so nice side effects though, so until my body gets used to it, I may be having a couple of not so great weeks.  It’s supposed to make me very drowsy and tired, but will also keep me awake at night.  It may cause me to gain weight (which actually made the mom’s happy) but may also make it harder for me to poop.  The big thing that made the mom’s unhappy was that it will probably cause me to loose the muscle tone that I’ve worked so hard to build up.  So, things that I’ve been working so hard on, rolling over, sitting up may get a lot harder in the next little while.  It also means that I’ll have to just be g-tube fed for a while too because I’m going to lose the muscle tone that helps me suck and I’ll also be very drowsy, so it would be dangerous for me to try and eat because I’m so good at aspirating when I’m not at my best.

So, it was a big week and we don’t really know what it means for the future.  I’ll have to be on the medicine (whichever ones works) for at least 7 – 8 months and hopefully by that time I will have grown out of these seizures.  But the doctor’s did say that it’s probably pretty likely that I’ll have a different kind later on.  So, like my veins and my sight, we’ll just add this to the list of things that I’ll just have to figure out as we go along.

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.