We are in the ER. Kiran is okay. I am sitting in a room, waiting for Arif and Kiran to get back from x-Ray.  My heart hurts. I have to smile – laugh to myself a little, even – or I will fall apart inside my sobs. 

We learned how to change out the g tube this morning. It has been three months since Kiran had the placement surgery, so it was time for us to learn how to change it out – it is done every three months. The nurse practitioner explained the process, Arif watched, and I did it. It went beautifully. The only disconcerting part was how much stomach fluids came up out of the hole when I took the old tube out – I wasn’t quite expecting that much drainage.

So tonight, when we were driving from our first stop on our night out to our second stop, when the sitter called and said his tube came out, I thought – between the panic bubbles rising up my throat – ok, we got this. At least we know what to do now. 

Right. 

Because the tubing attachment got caught and the tube was yanked out, the hole was swelling. His crying didn’t help. Not only could Arif not get the tube in, he couldn’t get the smaller tube in either. I did call our home health nurse directly (we love her – I normally wouldn’t – sometimes you have to take advantage of knowing you’re one of her favorite families and just skip protocol), and her recommendation was not to waste anymore time and just take him to the ER. 

The ER isn’t the best place for him 22 days before open heart surgery. We didn’t have a choice. They had to use dilators to stretch the hole in order to get the tube back in. But it’s in. The x-Ray is to verify placement … It will be the second time this has been done today. 

He was in so much pain. The poor little man. We played his “magic song” – When I’m With You by JJ Heller – I laid beside him and sang to him and held him the best I could. It was hard. It’s always hard. 

I was overwhelmed already today. It pales in comparison to what my brave little man constantly faces, but the realization of all the things I still have to do before we leave started pressing down on me today.  So. Overwhelmed. Paralyzed. Fearful. I was in need of a night out. 

But all of that faded away – not a single bit of it mattered anymore – when we got the call from our sitter. When that little boy needs us, we are there. I wouldn’t want anybody else lying next to him, even when it’s the hardest thing to do, to watch him feel pain.  

I will rip my heart out for this kid, and I do, every day. I won’t stop. Ever. No matter the cost.