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.

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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.

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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.

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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!

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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.