Today was our quarterly “meeting” with Dr. GI. Since the last visit, Jack’s been on the high calorie formula and tolerating it mostly well. However, he was also placed on the palliative care since the last visit, so I had to tell him all that.

(which, to tell you the truth, does not get easier over time…)

He’s gained a whopping 4 ounces.

We talked food, feeding, and football (we didn’t talk football,  but I needed another f word to counteract the one I’m about to tell you I dropped). He wants to try feeding therapy again (even though we got kicked out, AND the kid is still aspirating. You know, because he wants to feel like he’s doing something.) He talked to Jack about eating and Jack told him he likes circle crackers (Ritz) and plain toast. Which is sort of the extent of his diet at this point.

I mentioned that I am still  having trouble with the NoNo (g-tube). He tells us it hurts multiple times daily, and changing it requires all hands on deck, and a shot of tequilla (for me). I told him in January that there was something wrong. I called in April to tell him there’s something wrong. In July, I forgot to talk about it because I was too busy worrying about him losing weight.

He listens, and he fills the balloon up with water, and empties it. As if I didn’t do it right or something.

***This is the part of the story where you will read and see things that are not normal for me. I apologize in advance to Non, my Mom and to Jesus***

He tells me to get Jack up on the table.

Jack is no dummy. He has this figured out and yells, “NOT THE NONO!”

There are now 3 adults holding Jack down to take the NoNo out. Just take it out. This is not normal for my kid. He has been through so much, he usually just takes it like a champ, and we move on. It’s not like he’s not had the thing changed a few dozen times over his life.

He gets it out, and says he’s going to change it to a Mini instead of the Mic-Key (funny, right?).

So he starts…and he can’t get it in. He’s mashing on Jack, he’s trying really hard….

“hmmm, I see where this could be a problem, Heather.”

“You think?”

“Hang tight, Buddy…”

“WAHHHHHHHHHHHHHHHHHHHHHHHH!!!!”

“Momma will get you a pony, the police car at Toys ‘R Us, and the Real Death Star if you just hang on…”

“WAHHHHHHHHHHHHHHHHHHHHH! make him stop!”

(mom’s heart breaks…)

At this point, he puts some giant tool down Jack’s stoma to keep it open.

And I lost my ever-loving mind.

Jack is screaming bloody murder. My poor, sweet girl child is sitting in a chair in the corner looking like she may throw up or cry, or both.

“Get Your F-ing Hands OFF OF MY KID UNTIL YOU CAN DRUG HIM OR SOMETHING!”

“Heather, calm down.”

Well, when he said that, I sort of saw like a prism of color, and then someone else took over my body. I remember saying things like, “Fix this mess you made, RIGHT NOW!” and something to the effect of “I KNOW HOW TO GET TO THE  (bleepity bleeping) O.R FROM HERE!”

I guess my break with sanity caused him to pause, because he just up and left the room. I scooped up Jack and he was just broken. He was doing that sob where they literally shake and can’t catch their breaths. I was shaking too, but for other reasons.

In the end, we managed to get the original tube back in.

The plan is to get the Mini company to send their magical introducer (which is the fancy word for a paper clip that you shove inside the feeding tube to make it more rigid, which makes it easier to put in) so the doctor can replace his tube.

I stupidly asked what we would do if he can’t get it changed.

Surgery. They’ll put his tube in a different spot.

(which is when I had another break with reality, because OH MY GOSH why did we just go through all that instead of saying, “Gee, seems like this is a big issue, let’s schedule him for a little change in that site?”)

(Sorry Mom)