Today just sucked. Truly sucked.

Grayson’s tube got pulled at school yesterday (totally accidentally- these things happen) and even though I was able to push it back into his stoma enough so that it was functioning properly, I knew we needed to take him to the ER to get it checked out, and more than likely replaced.

I knew that if we took him in last night and he needed a replacement, they would just admit us and make us wait until today to do anything.  So I decided to tape the button to his belly and let Grayson sleep in his own bed without beeping monitors and annoying nurses bothering him all night and just bring him in early this morning.

Shortly after we got to the ER, I posted this very optimistic picture, claiming us to be in good spirits, despite being at the hospital.

Eight hours, no food for either of us, three needle sticks (including a failed IV) and two tube change attempts later, the selfie Grayson and I didn’t take would have looked exactly the opposite.

I begged the ER doctor and GI doctor to replace the tube without anesthesia. Grayson just had a tube change/anesthesia in March and I am really uncomfortable with the amount of times and frequency this kid has been put to sleep. Also, Ryan and I are going out of town tomorrow, and the rumor was they wouldn’t be able to do the change until tomorrow.

They finally consented, and did the procedure right there in the ER. I held Grayson’s little arms as he screamed and fought against me and watched with both horror and awe as they threaded a wire and tube into his abdomen. Within minutes, it was done- great! Now all we needed to do was go down to radiology to confirm placement and then we could go home!

The placement was not correct. The tube was in his stomach, not his intestines where it should have been. Since we were already in radiology, they decided to try again, but this time looking at a picture of his insides as they did it (yeah, I could have told them that was probably what they should have done to begin with). But again, they couldn’t get it. The radiologist was wiggling, tugging and pushing that tube all around Grayson’s insides while he screamed. Horrific. Finally, they got a guide wire and said this was the last effort they were going to make. If it didn’t work, we’d be staying for surgery tomorrow. Grayson was now asleep on the table, worn out from screaming.

By the grace of God, it worked. We were discharged about 30 minutes later, and we hung out outside while we waited for my mom to pick us up (ever hung outside a large ER? EPIC people watching!)Grayson is now sleeping soundly with his brand new tube.

Much of today I spent feeling sorry for myself- I was tired, hungry, freezing cold, and bored. But my lack of comfort was nothing compared to what Grayson went through and goes through over, and over and over. He anticipates needle sticks- he knows what’s coming. This makes me so, so sad. Even though he isn’t sick right now, he spent all day in the hospital, and went through so much pain, just so he can be fed. His life is just.not.fair.

He continues to teach me though. Grayson can have the worst day ever, and yet still finds joy in his music, his people, and in returning home. And despite the circumstances, we got a day to spend together, just us, snuggling, singing, and a little bit of crying. Love this boy to bits.