Toronto Update #3

posted on April 12th, 2007 by Chris Betlejemski

So much can happen is just a few days.

Last time we spoke, I mentioned that Julia was on the mend from her catheter study (heart pressure test). As of Easter Sunday, she was doing great; she was extubated, breathing pretty well on her own, and getting back to her usual self.

On Monday, she was moved back upstairs to the cardiac ward. It wasn't really her day in the sun though - she wouldn't sleep for anything. She just cried and fussed and kicked and pooped and cried some more. We spent nearly the entire day just trying to get her to settle down. By about 11pm, she finally closed her eyes. We kept on rocking her for a while, then carefully placed her into bed. Success - she was sleeping!

She slept soundly all night, but we didn't.

We got some news on Monday that was tearing us up pretty badly. Julia was going to need heart surgery, and they had scheduled it for Tuesday morning. Not something you can agree to without shedding a few tears and banging your head against the wall. We sort of knew this was a possibility, but were hoping it wouldn't come up. With heavy hearts , we signed the consent forms, and went through many risk assessments from many different doctors. We had surgeons, practitioners, cardiologists, and anesthetists all visit with us to point out all the dangers of the procedure.

In the end, handing over your baby for heart surgery feels a bit like walking through a dark ally at night: something terrible could happen, but hopefully not. How's that for reassurance?

The Big Day

You can't start the most blood-curdling day of you life on the wrong foot. We were with Julia bright and early on Tuesday to just spend some time with her, and get her (and us) ready for the operation. Of course, she was being horribly sweet to us... all smiles, cute faces, funny noises... I felt like dying.

I was playing with her, and talking h to her - trying to think of something profound to tell her, just in case. Every time I spoke, my throat closed completely, and I couldn't breathe. Incredibly sad thoughts came to mind whenever I kissed her. I picked her up and held her over my shoulder, giving her a little hug. Feeling her fuzzy little head grazing against my chin just about killed me. I was seriously thinking to run away with her. It's a good think we were in the cardiac ward - my heart was beating waaaay to hard. It's still kinda sore.

At about 10:30am, we got word that the surgery was a "go", and to get her prepped. We gave her a little sponge bath with the special pink soap (which actually smells like compost), and put her in a tiny little hospital gown. She looked like a little angel. I cried again.

We then wheeled her down to the operating room reception area, where we spoke to the doctors again. I think they could tell we were in a terrible state, so they gave us some mildly encouraging words. The only comfort I got from the room was the endless incoming and outgoing patients. They obviously do this kind of thing a lot.

It was time for her to go. We both had a little moment with her. I drew a little cross on her forehead with my thumb, then gave her a kiss and tried to say "I love you", but only managed to make a pathetic squeak. In fact, I probably sounded like a goose getting hit by a car. More tears. They wheeled her off, and the thumb-twiddling began.

The Big Wait

Canadian Geographic is a fabulous publication! I read two complete issues in the surgical waiting room. I learned about the elusive Canadian Moose that was introduced to the New Zealand Badlands in the early 1900's, as well the the re-emergence of the Plains Bison in Northern Alberta.

A 3-hour love affair with well-thumbed nature magazines pretty much got me through the entire surgery. We took a quick lunch break, and Monika managed to get a nap. Every time someone came in the door, my heart jumped out of my chest and did some break dancing (you know, the move that looks like a snake having a seizure).

Finally, Julia's surgeon entered and approached us. he calmly parlayed that the procedure went well and there were no complications. He said they successfully ligated her PDA (snipped a tube), and that she should be in recovery soon.

Hearing this really didn't make me feel any better. In fact, I was even more anxious to see her now. Alas, we had to wait some more.

Post-Op

Finally, we were allowed to go to the Critical Care Unit to visit Julia. I was trying to prepare myself mentally for what I was about to see. I knew she would be unconscious, intubated, naked, possibly bloody and bruised, and probably hooked up to a bunch of machines. As it turns out, it wasn't all that bad.

She was unconscious and intubated, but the surgical site was very clean and tidy. Aside from a little steri-strip (surgical band-aid), she looked like nothing happened. She was barely even puffy. The had shaved both sides of her head in case they were hard-pressed for an IV location. The resulting clump of hair was swept into a little jar with an official "sorry" label.

As for the machines, yes, there are a lot. A LOT. There are numerous pumping devices, IVs, ventilators, monitors, and sensors. Her IV is branched out like a tree, or possibly described better as overcrowded 1930's plumbing. It's almost comical, but there are so many different medications going into her, they had to install actual "taps", so they could turn them off and on independently of each other.

Perched at the end of her bed was a doctor, clearly deep in thought. His hand on his chin, as though he were calculating something that would change the world. Through a Nordic accent (I think), he said he would be keeping a very close eye on her for the next 24-48 hours. The nurses were scurrying around, adjusting medications, typing numbers into computers, and ordering unpronounceable pharmaceuticals.

I started feeling better about things.

Currently

Two days after the operation, she's slowly (but surely) making progress. They are slowly allowing her to wake up a little, and weaning down the ventilation. She should be extubated in a few days. The big challenge is keeping her stable as they wean her ventilation, as she is hypertensive, her blood-oxygen level tends to slip whenever she starts to stir. I feel pretty confident that this will be worked out soon, and she will be out of the CCU next week.

Et cetera

In related news... I'm sick. Started feeling a little "off" last night, and woke up today with a full-on head cold. Unfortunately, this means I'm banished from Julia's bedside until I'm healthy again. This couldn't have come at a worse time. I miss her so much. This blows.

In un-related news, we ran in to a familiar face in the ICU on Sunday. A girl who lived down the street from me (when I was small) now works at SickKids Hospital. She's been in the the ICU for 12 years, does helicopter transport, and is as nice as pie.

In semi-related news, we've met a great little family here at the hospital. Their daughter was across from Julia in the ICU last week. There are some similarities in their ordeal, so we've been trading war stories. This has been the best therapy, just knowing that you're not the only person in this situation. Just chattering about our cases has relieved a lot of stress. Good luck, Payton!

Anyway, thanks for reading. Keep Julia in your prayers, and hopefully we'll see you soon!!!

DAD

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This is the little web log of the Betlejemski Family: Christopher, Monika, and (our little champ) Julia.