When it Rains it Pours

Or snows. The timing is right for both really. Usually right around Halloween night we are in for our very first snow of the year. This morning, small, wet flakes began sticking to the edges of the deck.

I watched them fall as the air I was breathing in suddenly felt sticky too, like I couldn't quite get the breath I knew I so desperately needed to re-centre myself. So instead, I sat there watching the snow fall in October.

I woke up this morning with a bang. Quite literally a BANG. Rémi pulled over his feeding stand while his feed was running first thing this morning. He wasn't hurt, and it was really only a matter of time before this happened. He's so strong and so curious. He did however manage to rip his tube out in the process. No big deal right? I can't even count how many times we've replaced his tube at home now. It feels like we are seasoned pros.

Today was different. As you might remember from my last post, Rémi has been fighting a viral illness for just over 3 weeks now. He's almost completely back to his regular self but for a small bit of a lingering cough. Me on the other hand, well his illness overtook me early last week. And it turns out after 3.5 years of avoiding it, I finally got COVID. The jury is still out whether this is what Rémi had, or if I picked it up at one of the hospital trips we took with him. So, this is where our morning begins. Sleep deprived from caring for a sick baby these past few weeks, and feverish with COVID, Rémi's tube is out.

Step 1: take a big breath, centre and then grab our emergency supplies. It's much easier to replace the tube when we have everything we need right at our fingertips. I keep an on the go kit in his diaper bag and one on his feeding pole (my "Oh Sh*t Tubie Kit" as I like to call it. It's got a better ring to it than emergency kit don't you think?) It's never far away. Plus, it's never really as bad as my racing heart thinks. Usually....

I should have known things would be different today. It felt different. After a few attempts it became apparent we weren't getting his tube back in. This constitutes a bit of an emergency. You see, if his tube is out for too long, the hole (stoma) will close up. The longer it's out, the smaller the hole gets and the harder it is to get anything back in. We managed to get a smaller replacement catheter in that we can use in this situation, but this has never happened before and we didn't know what to do next.

After consulting with the emergency Gtube nurses at the hospital, we came up with a plan. They are hoping that the trauma to his stoma caused some inflammation that will go down in a few days. We will try again at home in 2 days to re-insert his tube and if we can't get it back in will need to bring him to Toronto and have it re-inserted in clinic, or possibly under sedation at IGT (image guided therapy). I'm hoping they are right, and we can re-insert successfully at home.

Until then, we are racking our brains on how to keep his hands off the catheter tube and get him safely fed with minimal mess. It's fitting that tomorrow is Halloween as we've got him taped and wrapped up like a mummy trying to keep everything secure.

As I sit here this evening, the snow has all melted from the deck. It didn't last long, nothing ever does. By next week, hopefully we will be sitting with a new functional tube. Wish us luck!