And again I am stumped.
So much of my son’s medical care continues to rest on my ability to speak up, suggest, prod, and generally be a pain in the butt to those in our medical world.
Right from the beginning, our son River’s health has stumped doctors. From when he was two weeks old and they couldn’t get him breathing on his own; through to 5 weeks old when he quickly deteriorated and needed multiple resuscitations a day for two weeks; to a life-threatening post-surgical infection that left him with a trachie.
At times this has meant that 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 doubted ourselves. But from so many close calls and confirmations that River’s body was not coping, we have seen time and time again that we were reading the signs correctly, and that he needed us to plead his case.
So when River started fevering earlier this week, one week after his tonsillectomy surgery, alarms bells went off for us. His colour was off, he was off, and something was causing his health to plummet.
But the tricky part was getting to the experts who do know the signs to look for, and who take seriously the challenge that complex health kiddies pose. And doing this after-hours wasn’t easy.
The first night we went into ED River was sent home, to only fever the entire rest of the night, waking every 30 minutes and moaning away. I didn’t sleep. He has had a seizure before during a fever. I knew he was not coping with whatever was going on.
The next night I went in to ED, and was on a mission to get to the right doctors who would listen. And the crazy thing is, how many times I had to instruct and correct the medical team to make sure they got the right picture of what was going on.
Twice the nurses did incorrect temperatures of River, 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 realised the machine was playing up.
We were admitted.
Fast forward a few days and we did begin to be seen by some great specialists who started River on lots of meds to keep any potential infections at bay.
Then he wakes one morning, 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 this crazy episode, some sort of crisis. He turns blue and starts needing 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 stabilise 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.
To be a lion, as I feel parenthood has made me into. 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 have access to so much medical care and treatments, and this access doesn’t depend on our income level. Gratitude that we were in hospital when that event took place.
And most of all, gratitude that on Saturday Rivers body bounced back and he is once again his happy, cheeky, smiling self.