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My Child With a Disability Has Made Me Into a Mother Lion

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Why does so much of my son’s medical care rest on my ability to speak up, suggest, prod, and generally be a pain in the butt to those around us?

Right from the beginning our son, River’s health, has stumped doctors. From when he was 2 weeks old and they couldn’t get him breathing on his own, to 5 weeks old when he quickly deteriorated needing multiple resuscitations a day for two weeks, to a life threatening post-surgery infection that left him with a trachie — his body has not always responded how others usually do.

At times, this has meant doctors — usually the less experienced ones — have dismissed our concerns and given the easy answers to why he is behaving strangely.

During some of these times, we have lost our confidence, questioned our instincts and anxiety, and doubted ourselves. But from so many close calls and confirmations that River’s body was not coping, we have seen time and time again we were reading the signs correctly, and River has needed us to plead his case.

So when River developed a fever earlier this week, one week after his tonsillectomy surgery, alarms bells went off for us. His color was off, he was off, and something was causing his health to plummet.

The tricky part was getting to the experts who do know the signs to look for, and who take seriously the challenge that medically complex kiddies pose. And doing this after-hours wasn’t easy.

The first night we took him in, River was sent home. He had a fever the entire rest of the night, waking every 30 minutes and moaning. I didn’t sleep, as he has had a seizure before during a fever. I knew he was not coping with whatever was going on in his body.

The next night I went in, I was on a mission to get to the right doctors who would listen. And the surprising thing is the many times I had to instruct and correct the medical team to make sure they got the right picture of what was going on with River.

Twice, the nurses took incorrect temperatures of Rive, to which I had to ask them to use pediatric pieces which did show his raging fever. Another time when checking his oxygen level, they didn’t use the equipment properly and wanted to quickly start him on oxygen. I insisted they try the machine on themselves as he looked like he was breathing fine, to which they realized the machine was playing up.

Fast forward a few days, and we finally got to see some great specialists who started River on meds to keep any potential infections at bay.

Then he wakes one morning at the hospital, seeming a bit better, and I think, yes he is starting to kick this and it must have just been an infection or possibly something viral. And then he has an episode, some sort of crisis. He turns blue and needs urgent medication and intervention.

An event that could have been life-threatening if we were at home.

During this event, to which the younger doctor team seem stumped, but trying to do something to stabilize him, I suggest they check his blood sugars. They agree and find he is having a low sugar, some sort of “hypo” as they call them, either as a result of something else major going on or causing the event in the first place.

And so, this is my job.

I feel parenthood has made me into a lion: fierce, protective, instinctual and strong. Stronger than I knew I could be.

Wishing that I didn’t have to be just so strong, or just so insistent.

But then also holding this tension of gratitude.

Gratitude that I have a system that lets me speak out, even if it takes many attempts. Gratitude that we were in a hospital when that event took place. And most of all, gratitude that on Saturday, River’s body bounced back and he is once again his beautiful smiling self.

Follow this journey at Certainly Suspended

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Originally published: March 6, 2018
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