Lily’s New Wheels

There are certain specialists we see at Sick Kids that leave us less stressed than others.  I like to think of these as “maintenance” appointments – doctor’s we need to see because there was an issue in the past or things that are just part of life and require some follow-up: our regular pediatrician, opthamology and our yearly visit to the thrombosis clinic.

Thrombosis is usually an easy appointment but we’re happy to go.  During each of Lily’s open heart surgeries, she has developed some sort of blood clot: after her first surgery, it was a deep vein thrombosis in her right leg, and after her second surgery it was a venos thrombosis in her left leg, along with a thrombosis on the tricuspid valve in her heart (that was the very scary one that they found on a Friday afternoon and it had miraculously cleared itself by Monday morning, but not after Lily’s cardiologist basically told us that she could have a pulmonary embolism at any moment).  The thrombosis clinic follows Lily to watch for effects of these clots and to ensure that if there are any (because they can cause problems even years later) that we have a plan in place to deal with that.  The appointment itself is very straight forward,  they measure her legs – both the length and circumference – to ensure that both legs are growing at the same rate; they watch for signs of redness, swelling, cyanosis – any symptoms that show there is an issue.  For a while after they discovered the clot on her tricuspid valve, we had discussions about starting her on a drug called Enoxoparin, which is a blood thinner that Jess and I would have delievered through a daily injection.  Luckily for our nerves, after discussing with cardiology, it was decided that we would start with baby aspirin and as long as everything held steady we would stay with that.  I’m happy to say we’ve never had to revisit the option of Enoxoparin!

After looking through Lily’s medical history, they also asked us last year to do full blood panel to conclusively determine if there was something about Lily’s blood that could be the reason behind these issues.  It took us a year to get the results and it turns out that not only does Lily have an increased Factor VIII (which determines how fast the blood clots – in hemophilia there is a decreased Factor VIII, which means the blood doesn’t clot. Lily has the opposite – her blood clots too quickly), she also has a Factor V Leiden (a mutation of one of the clotting factors).  Both of these combined have pretty much guaranteed that she will face issues with blood clots for the rest of her life.  This, in itself, is not anything terrifying, but just another thing that we have to keep tucked away in the part of our brains we call, “Lily’s Medical Mumbo Jumbo”, because it’s information that is important to have when we’re looking at subsequent surgeries, if she ever needs to go on birth control or even if we ever want to take a flight somewhere. What’s amazing to me is that we can even get this information from a simple blood test (well, simple in theory, not so simple for the poor technician trying to draw Lily’s blood).  It’s like opening a door wide open for us when we don’t know all of Lily’s genetic family medical history.  For us, it’s especially cool, because now we can pass this information along to her birth parents so that it’s something they can be aware of for any of their other children.

We’re slowly leading up to Lily’s next ECHO and cardiology visit.  Sometimes it’s very hard not to start worrying about what may come up and to remind ourselves that we just need to look at Lily to see how well she’s doing.  With the change in her formula she’s clearly gaining weight, and energy. You can tell just by watching her for 10 minutes that she’s no longer content to be a passive participant in her own life. She’s aching to get moving and, as such, has developed quite the streak of independence. She doesn’t want to just sit on our lap and be entertained, she wants to be on the ground, exploring everything. She’s constantly trying to pull herself up and I have no doubt that one morning, sooner rather than later, I’m going to be greeted by a little girl standing in her crib.

So, to harness this new energy, we – along with Lily’s OT, decided that the time was right to try a walker. It took a couple of weeks but a loaner was dropped off at our house this week and they made sure that it fit her properly. We’re going to try it out for a week and then, as long as we’re happy with it, we will out in the order for her own. I would love to say that we strapped her in and she did a loop around the neighbourhood but she did figure out how to take a few steps, which is actually way more than we thought she would immediately get from it. Fingers crossed that with some work and practice she and her new set of wheels will be toddling all around!




Around and Around and Around

I know that we’ve laughed at what a trickster I am before, but it really is true.  In order for me to get to go home, cardiology wanted to make sure that everything about my heart and lungs were working fine.  They were a little concerned about some of my earlier test results and wanted to do another Echo to see if I had pulmonary hypertension (high blood pressure, but between my lungs and my heart, not like the normal blood pressure).  So, yesterday morning I got to put on my pretty (and comfy) scrubs and I got wheeled down to the Echo lab, where Mama C and I saw Jane (who was my nurse the first time that Mama C and Mommy came for an echo with me before my first overnight visit) who came over to make sure we were all okay because she had heard about my arrest.  My nurse for yesterday was Rita, who was really kind and made sure I got weight and height checked (5.13kg and 63cm) and then she gave me some medication to make me sleepy (because it’s easier to get a clear picture if I’m sleeping) and I drifted off for a really great nap.











Mama C, on the other hand, hung out beside me until it was over.  She says that she knew something wasn’t right because the radiologist walked away and went right to the phone to call someone.  It turns out that he was calling my cardiologist because there was something a little surprising happening inside of me.  My cardiologist came downstairs right away to talk to Mama C and explained what was going on.  The heart is made up of 4 chambers: the left and right atrium and the left and right ventricles.  The blood moves between the atrium and ventricles through tiny doors that open and close when the heart beats.  It turns out that I have a blood clot that is right on the door between my right atrium and ventricle and it`s only being held in place by a little thin arm.  This is dangerous because every time the door opens and closes, it puts pressure on that thin arm and it increases the chances of the clot coming lose and moving to my lungs (that`s called a pulmonary embolism and it`s really bad).  So, they’ve loaded me up with blood thinners to decrease the work my heart has to do and the goal is that the longer the clot doesn’t move, the more likely that it won’t move – that hopefully it will calcify and stay exactly where it is.  The good(ish) news is that it`s possible that this is what caused my cardiac arrest in the first place – maybe a small piece of is got dislodged earlier – so they’ve scheduled an MRI for Tuesday, to look at my heart and my brain more closely to see if they can figure out if there was damage done earlier.  But for now, the doctor’s have hooked me back up to the heart and oxygen monitors and are constantly checking the level of blood thinners in my system so that they can keep me safe.  When my cardiologist came upstairs to explain everything to Mommy (because Mama C wasn’t sure she could explain it as well as an actual doctor) she said that while they have seen this happen before, it`s actually really rare, which mostly made the mom’s laugh because of course I`m going to develop the thing that’s rare – I do every single time!











It also means that my nurses are coming in to check on me way more often, which isn’t so bad because they all think that I`m so adorable – especially with my pigtails.  One nurse took one look at me and said that I looked like Boo from Monsters Inc and then she called me that all night long.  I’m lucky their so nice to me, because I can certainly be quite cranky – I really don’t like getting my blood pressure taken and I scream horribly when they come to do blood work.  But most of the time I try and be extra charming to make up for the times that I`m not such a great patient.