Thursday, 16 January 2014

Tubular


You can have all the experience in the world but there's no pain quite like watching your child suffer.

Not that it's worse than other pains per se. It's just agonizing in a different way.

All week I could sense agony as Trish fought to get more food in to Dominic, to no avail. He simply wasn't interested.

When he did eat, it wasn't enough. A chicken wing here. A few spoonfuls of oatmeal there. A popsicle. Some juice. But at the end of the day, a 15-month-old should be growing, not losing weight.

First the weight dipped below 10 kilograms. Then 9.7. Today, 9.5. It was finally time for the one thing we'd avoided since he got here.

The NG tube.

NG stands for nasogastric, which if you break it down makes sense. In through the nose, down into the stomach. He had one the first week he was here at the Alberta Children's Hospital, but it was only used to remove excess gas and fluid from his bloated stomach.

To think, back then he was 11.5 kilograms. He looked like a water balloon. Now the tube will serve the opposite purpose, giving him the nutrition and calories he's not putting into his mouth on his own.

The first feeding started as he went to sleep. A little bag of milky-white goo. A little pump turning on every few minutes to send some more through the line.

On the positive side there's a high likelihood he was going to need this during the bone marrow transplant phase anyhow, so maybe it's good experience to deal with it now.

On the other hand, imagine being held down by three well-meaning nurses and having a giant tube shoved up your nose. You'd scream too.

Most of the time Dom's macking on the nurses like a playboy. He walks by their station, smiles, waves, pretty much demands attention. One time when he got his way he wound up hitting a combination of keys that turned the nurse station's computer screen image sideways.

After tonight's bout of torture, he walked by and gave them pure, babyfaced stink-eye. And that was before he pooped.

He'll like them again tomorrow, and we'll like the tube once we see his weight start to recover. But getting it started is no fun for anybody.

2 comments:

  1. Sean and Trish,
    These are some tough days for you and Dom. It's all a path to a cure - keep your eyes on the prize. There is no sugar-coating what you are going through. Some days are really going to suck. What the two of you have been great about is finding the joy and happiness in the moment, even the tough moments. It's impossible to not have feelings of worry and despair. Give them their time and let them go. Every day you have is a good day, in some way. Sometimes it can be a little harder to find the joy. Guaranteed, it is there when you look for it.

    I remember one time when Callum had to have treatment delayed because his blood counts were too low. He was absolutely devastated and thought something was wrong. He was reminded by a nurse that what it really meant is that the treatment was working. It was like brain gymnastics to start to think that

    There is no way that I can really understand what this is like for you. My experience was as a spouse, not a parent. Lots of issues are the same, and those are what I understand. Filter anything I say that doesn't work for you.

    Get as many cuddles as you can. When Dom is sleeping in your arms, or you are watching him sleep, close your eyes and visualize playing soccer with him, the first time you teach him to skate, watching him score his first goal in hockey, or make his first stop if he decides to play that crazy position of goaltender!

    When the going gets tough, breathe. That was likely the best advice I was ever given. Remember to breathe!

    What is happening now is because the treatment is working. It's all the set up to the grand finale of bone marrow transplant and.....a cure!

    Keep up the good work and the positive thoughts. You guys are doing amazing!

    Take care.

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  2. You know.. I sit back and reflect on the irony here. Your blog entries makes me chuckle yet the subject matter, a sick child is not a laughing matter. Thank you, Sean, for taking us on this journey with your family. Prayers are being said, fingers crossed, and all manner of hope and luck being wished for for your little boy. Take care.

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