Monday, 24 March 2014

Weary of the weekend

Weekends are different at the hospital.

For one, you can find a parking spot way easier, even if they seem to be forever cleaning the three-level parkade.

Hallways seem empty, sometimes delightfully quiet, other times lonely as if the place has closed down.

In the ward there's different staff. Fewer doctors. You're more likely to get a nurse who isn't usually on the oncology ward, which is to say one with far less expertise for your child. And you don't go to morning rounds, sitting around a table of seven or eight specialists like you would during the week. Many of them have the weekend off too, so a doctor will come to the room to talk to you.

All this would be fine if we had the same confidence in these weekend doctors as we do with the ones during the week.

Dominic has had a fever on and off for the past week. At first they put him on antibiotics, but the fever persisted. We started to worry.

He wasn't a happy camper, but we chalked the lethargy up to some low hemoglobin counts. He's got another tooth coming in, maybe that's it?

Then his stomach started to bulge.

It's now about as big as it was when we first took him to our local pediatrician way back in September. It's no less alarming to see it now.

On Saturday I raised the alarm bell, pretty much demanding that they take a closer look. They acquiesced, sending us for a CT scan. He got packaged up like a sushi roll, they did the scan, and told us it showed an enlarged liver.

Why? They're not quite sure. They posited it could be a side effect from the bone marrow transplant which causes blood clots in the liver, but ruled that out. They decided against an ultrasound to look more closely at the situation when the blood clots were ruled out, and reduced his IV fluid intake hoping that would solve the problem.

It didn't. And today at rounds Trish was told whoops, now they think it's blood clots. A drug has to be ordered in from Italy and won't be here for another couple days. They did an ultrasound.

It's frustrating that the weekend doctors didn't come to the same conclusion as the weekday ones.

In the meantime Dominic continues to be in pain from his distended tummy. He's now back on isolation as an as-yet-unidentified bug has shown up in his system.

We just hope things get better before next weekend. Because once we get to the weekend, all we'll look forward to is Monday.

5 comments:

  1. Oh no :( Poor little guy. I don't understand why the 'top' doctors & nurses don't work on the weekends.

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  2. Hey Guys
    Hang in there we had a similar round with the weekend doctors about C's gall bladder. Quite the gong show but just know that all Dominic wants is you guys and all is ok in his world...aside from the yucky tummy. When things got crazy I really just tried to stay focused on C...everything else recedes and advocating up a storm seems just right!! You are doing a great job.

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  3. What a tough weekend, Sean. Keep asking, prodding and insisting. The medical community serves us. Keep that in mind. Yes, they work hard. Yes, they are more educated about the disease. They are not more educated about Dom. They don't like to be second guessed. They still make mistakes. If the worst thing to happen is you insist on a test or to have the onc on-call come in, and it ends up Dom is OK, so be it. That is what they are paid to do. They, like most people in our lives, get to have our trust until that is broken. It doesn't matter what it costs or who has to be called in - sometimes it's necessary.

    Well, my rant is over. I hope things start to perk up with Dom. The good thing is that once they find a cause and can treat it, he should start to get better. You will get through it.

    Take care,
    Hugs
    Lorna

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  4. I absolutely understand the "hospital weekend" that feels more like a week than a regular week. I'm so sorry Dom got sick over one of these weekends, as it seems to make them that much longer. I hope the poor little guy gets some relief soon, and Mommy and Daddy can worry a bit less. There are lots of people out there pulling for Dom and your family, and sending lots of warm wishes and love. Stay strong Dom, Mommy and Daddy! <3

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  5. I am a colleague of Erin's and I just wanted to let you know that you are in our thoughts and prayers. Also, to let you know that there is definatley light at the end of the tunnel. My 21 year old son was diagnosed with ALL 2 years ago, he had his stem cell transplant in July 2012 and is doing really well today. The reason I wanted to share this with was not to tell our story but to let you know that we had the same frustrations with weekend staff at the Tom Baker. We got so frustrated that I told them, if my son's big toe hurt they were going to know about it. This might seem extreme but they don't kow your child like you do. I can't urge you enough to make sure you are heard and even if you think it is trivial. The bumps in your journey will get less and you won't remeber half of them when this is over.God bless you all and hang in there!!

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