"Change, when it comes, cracks everything open."
Dorothy Allen

Wednesday, April 3, 2013

The long way home

So here's what happened.  I know you all probably know already, but this is to set the record straight and to help me remember.  It's hard to think that someday this will be a distant fuzzy memory to me, but it will be, so I have this need to get it down.

As I posted previously, Sebastian had been scheduled for an operation to close a defect (hole) in his heart.  It was as non-invasive as a heart surgery can be.  We had appointments scheduled for 3 days at SickKids in Toronto- April 1 was our pre-op and assessment, April 2 was the actual surgery and April 3 was the follow up echo-cardiogram.

On the Saturday before his surgery (which also coincidentally happened to be Easter Weekend) Sebastian was up about 4 in the morning in tears.  He said that his ear hurt and he was really crying hard.  I gave him some kid's Advil and some ear drops we had left over from his last ear infection. I rubbed his ear and tried to get him to go back to sleep.  About 6am, he leaned over and asked me "did you hear that?"  When I asked what it was that he had heard, he told me his ear had popped and that it was bubbling.  I assumed at the time that he had had some sinus pressure (he had a bit of a cold and congestion for the couple of days before) and that his ear had finally popped and released the pressure.  He said he felt better and drifted off to sleep.

What I didn't realize until the next morning was that his ear had really popped.  When he got up in the morning, there was blood on his pillow and in his ear.  I knew then that his infection had perforated the ear drum and was draining.  I called the doctor as soon as they opened.  They got us in right away and the doctor prescribed antibiotics for the next 10 days.

I was glad that we had gotten on it as fast as we did.  But I was very fearful that the heart procedure would be cancelled now.  There was an infection in his body, so I didn't think that they would want to take a chance with operating like that.  However, since it was Easter weekend, I couldn't call and check and find out what they thought.  We knew we had to take the chance and head up for our pre-op, fully expecting to be sent home right away to wait for a new surgery date.

On the Monday, we got up at 4am to get ready.  Neither Geoff or I had ever been to Sick Kids, so we had no idea where it was, how long it would take to get there, and how to get around to where we needed to be once we finally arrived.  So we wanted to have as much time as possible, so that we weren't running around like crazy people, adding a bunch of unwanted stress to an already stressful day.

We were on the road by 5am, to make an 8am appointment.  Since it was Easter Monday, the traffic was a bit lighter than normal and we made it there in plenty of time, by about 630am.  We toured the atrium, got our bearings a bit and settled in to wait.  There is a Starbucks in the lobby, so we grabbed some snacks and finally got some direction on where we should be.  We made our way to the 4th floor, past the organic and gluten free shop, the full Shoppers Drug Mart and other amazing stores (all located conveniently inside the hospital!!)  We checked in with the Cardiac Diagnostic and Interventional Unit (CDIU).  We told her about the antibiotics and the ear infection.  She got a funny look and told us that the surgery would likely be cancelled, but that they would check and make sure.  She recommended that we go down and do our chest xray to get it out of the way, since we were nice and early.  She was very helpful and nice and gave us great directions.

The xrays ended up taking us all of 2 minutes (honestly, it took longer to walk there than to get them done) and we headed back to wait for our consult with the nurse.

Now, all morning, I had been practicing my positive thinking.  I understood that it was highly likely that the surgery was going to be cancelled.  I really didn't want it to be.  Obviously, I didn't want it to proceed if it was unsafe for Sebastian, but we had everything ready to go.  I had booked time off work, Geoff had made arrangements for coverage at the store.  Sebastian's school had been notified and everything was in place.  It is just very frustrating to think that we would be put into the holding pattern once again.  So I had spent the morning picturing my Facebook status as reading "Surgery is a GO!!"  I held that picture in my head, against all odds and believed in it with all my might.

Eventually, we got taken into a consult room by a nurse.  She did the typical- height, weight, O2 levels, blood pressure, etc.  They had told us to bring up all of Sebastian's medications so that they knew exactly what he was on.  Certain ones have to be stopped or modified before the surgery.  We mentioned to her again about the antibiotics and his ear.  She said that she knew and she was waiting to hear from the doctor about his thoughts.  She reiterated that it was likely the surgery would be postponed.  She left the room to go check on the Dr.  A few minutes later, she returned.  The doctor's thoughts were that as long as Sebastian had been on the antibiotics for 48 hours before the surgery and as long as he had no other symptoms, he was OK with doing the surgery.  What??  Are you kidding me? 

I told the nurse that I wanted to hug her, I was so happy.  She just laughed and was as happy as we were.  I still didn't fully believe it, since I knew we still had to talk to the Doctor himself but I figured we were 80% of the way there.  I was texting back and forth with my mom and some of my other friends that had messaged me- like Nyree, and Dawn C and Shannon.  I was thrilled to share the news that we were pretty close to a go ahead!

After talking with the nurse (she gave us a quick low down of the actual procedure and some of the after care instructions) we had to go for our ECG.  This was the only time we got lost in the hospital and it was totally my fault.  We were supposed to go right, then left...I went straight, then left.  My bad but we were able to find our way back pretty quickly, and we got to see more parts of the hospital, which was interesting.  Finally we were back on track to where we should be and made it to the ECG lab (or as we call it for Sebastian- the octopus test.  If you have ever had one, you know why.)

Now, as I mentioned, before the ear infection, Sebastian had been fighting a bit of a cold.  Nothing bad or debilitating, but a stuffy nose and a bit of a cough.  I had given him a couple of detox baths, to try and help.  So far, on Monday, he had been perfectly fine.  No runny nose, no cough at all.  I was thrilled and grateful.  As we were sitting in the waiting room for the ECG, Sebastian drank a juice box.  And started coughing.  And coughing.  And coughing.

If you have been in a Dr office or hospital in the years between SARS and today, you know that people freak out over coughs.  You can be in a store and someone will cough right in your face.  In a hospital though, people look at you like you have just sprayed liquid HIV all over them.  It's scary.

So, now I am all around these medically fragile kids and Sebastian is coughing.  And won't (or can't) stop.  When Sebastian coughs long enough or hard enough, he starts to gag.  If he gags too much, he eventually throws up.  We had just gotten the go ahead sign on the surgery and I can see it all going away because he is choking on a juice box. Damn it!

I told Geoff finally to take Sebastian to the bathroom.  If he was going to throw up, I wanted it to be somewhere private and not on the magazine rack in the waiting room.  They left and I stayed to wait.  A few minutes later the nurse called Sebastian's name.  I told her he had just gone to the washroom and should be back in a few minutes.  She smiled and nodded and left.  I waited.

And waited and waited.

By now, I am thinking that this kid is throwing up all over the bathroom.  He is probably a mess and so is Geoff as he tries to help him out.  My already overactive imagination is in overdrive.  Suddenly, Geoff and Sebastian come walking in.  Turns out the nurse intercepted them on the way from the bathroom and they had just gone in directly to the ECG.  It was all over.  Phew.  My relief over him being OK overshadowed any desire I had to be pissed off at being left to wait and worry.   Geoff did say that Sebastian was a bit upset in the test, asking why the girl was touching him, and loudly instructing her to stop.  "Girl, get off me!  Stop touching me, girl!!"  However he let them do what they needed to and all was well.

We headed back with these results in hand.  The nurse (her name was Laurie, I think) said that there was still a significant wait for the Doctor.  He was doing surgeries as well as working the clinic.  She recommended we head out and have some lunch.  We had an echo cardiogram booked for 2pm, and then hopefully by the time we came back after that, the doctor would be ready to see us.

We went to the cafeteria and checked that out.  The spread is impressive and there is lots of seating.  Even then, because it was about noon, it was very busy and seats were at a premium.  We managed to snag some and settled in for a bit.  The hospital has free WiFi almost everywhere (except our CDIU waiting room, of course.  Sheesh) so Sebastian browsed YouTube and Geoff and I people watched.  About 1:30 we headed up for the echo.

Even though our appointment was at 2pm, they called us in early, about 1:40. I was excited, because it had already been a long day (we had been there for 7 hours already at this point) and the earlier we were done, the earlier we could leave and potentially miss some of the rush hour traffic.

Alas, it was not meant to be.

Because Sebastian had never had an echo at SickKids before (his last couple have been at McMaster and before that at GNGH) they had to do a full work up.  And that takes an hour.  An hour of laying still and letting someone jam you with a wand while smearing goo on your chest.  After you have already sat around and been poked and prodded by other strangers for the last 7 hours.  So, obviously, it did not go well.

His last echo went smashingly at McMaster.  He watched movies and was good as gold.  This time, he fought and cried and yelled and pushed.  Geoff had to come in to help.  We ran the iPad and he watched movies while we held him down.  The ultrasound tech got through it as best she could and had a doctor sign off on the quality of the images before we left, so that we wouldn't have to come back.  I was already dreading the echo we would have to go through on the Wednesday after the surgery.

Finally, our tests were done.  We headed back to our waiting room again- after a short break to take pictures of the awesome animals painted on windows (Sebastian's favourite was the hippo, of course).  We just needed to talk to the doc and then (potentially) we were out of there.

The waiting room was hot- incredibly hot.  And we were tired, so very very tired.  It made for a bad combination.  Geoff actually started snoring at one point.  My head got super heavy on my neck and bobbed a bit.  We made it through- just barely.

When Doctor Otto finally pulled us in, it was a relief.  The end was near. He walked us through the surgery in more detail, showed us what the patches looked like and explained some of the possible complications and issues that could be experienced.  He was thorough and very nice. He checked out all the test results and looked Sebastian over one last time.  I half expected him to freak out when he looked in Sebastian's ear- to yell at us about how he has never seen a worse infection, or some such nonsense.  When he didn't, I figured we were in the clear.  There was a funny moment when he checked Sebastian's groin.  He wanted to look for his pulse and his veins.  Geoff was helping Sebastian take his pants down, while Sebastian was yelling "No, Doctor, don't touch me there!"  I was so proud of him for absorbing some of my never ending lectures about good and bad touching. :)

The doctor explained that there would be 2 incisions, one on either side of his groin.  An ultrasound would go up one vein, which would allow them to see what exactly was there and what was needed to fix it.  The other would be the catheter that would carry the equipment needed to fix the hole.  He explained that they would inflate the hole using a balloon, to determine its true size and shape.  They would then patch it with a metal mesh on either side of the hole, fastened to the walls around the hole.  The patch would be fitted to the maximum size of the hole, to ensure that there wouldn't be an issue if the hole stretched.  In a matter of months, the tissues of his heart would grow over the mesh and it would permanently be a part of his heart.  He explained that in some cases there can be more than one hole.  They make a determination then about what do with the secondary hole- if it is small enough, it can be left.  If it is close to the first one, sometimes the same patch can be used to repair both. If it needs it, they will patch both of them.  It all depends.  He covered the possible side effects- stroke, infection, death.  Blah blah blah. :)  We signed our consent and we were free to go.

We didn't need to be told twice.

We hauled ass out of the building.  By this time it was about 4:30. We ended up taking Lakeshore most of the way home to avoid the problems on the highways.  It really doesn't save much time, but you do keep moving, so it saves lots of frustration.  We had promised Sebastian a stop at the toy store if he was good, so we did that.  Picked up a gift for the little girl we left behind.  We went to my mom and dad's to visit with her for a bit before she had to go to bed.  We stopped at Walmart to print pictures for Sebastian (he loves his pictures and we had taken a whole bunch that he wanted to have) and to get him a pair of comfy track pants to wear home the next day.  Finally we headed home.  Ate a little something (Sebastian had more, since he had to fast the next day- so this was his last meal.).  I finally got to post that Facebook status- exactly as I had envisioned it. Then to bed and sleep the sleep of the mentally exhausted.

Onto Day 2.


  1. "Girl, get off me! Stop touching me, girl!!" and "No, Doctor, don't touch me there!" ...I freaking LOVE it! I was cheering for him as I was reading - what an awesome kid, who knows his own mind.

    What amazing parents, who consistently, and instinctively, make every effort to make things easier for their son. You turned a rough day into a fun day whenever possible, and he'll remember the fun parts - you also promptly got the pictures for him so that he could have the visual reminders of the good parts.

    Inspiring...all of you :)

    1. Thanks Val. To use a Val-ism, You make me smile. :)

  2. Still not quite sure what to say. I am still not handling difficult emotions with much grace these days. Thinking of you all constantly. Sounds like a few more shining Moments of Awesome from you both!


    1. Just a tip. Don't read Day 2. Or if you do, here's a spoiler- it all turns out ok in the end. :) I just appreciate you reading. I am always shocked and humbled by that. :)