Are you tired of feeding tube drama yet? Yes? Stop reading.

We had to go back to the ER again this morning. We woke up to Grayson crying in his crib, tangled up in his tube, coughing, and sneezing milk. Gross.

This is the 3rd time we’ve had to go to the ER to get the NG replaced- twice on the weekend and once when we were out of town. Seriously? What is wrong with having a minor medical emergency sometime between Monday and Friday when our pediatrician is open?

Well, it doesn’t matter. We have a week to go with until the G-tube surgery, and if the NG comes out again, we aren’t putting it back in. I cannot watch my baby be tortured like he was this morning- screaming hysterically and we absolutely could not console him for a long time. I hate pinning my baby down on a table, his daddy holding his head, while a nurse shoves a tube down his nose making him bleed, then stretching wads of tape on his sweet little face. We left the hospital with a totally spent, sweaty baby with a face red and wet from screaming. If it comes out before next Monday, I will just do what I have to do to get food/liquids in him. If I have to squirt Pediasure in his mouth with a syringe every hour that’s what I’ll do.

Today made me really scared for the future. Parenting and caring for Grayson is and is going to be very difficult. I know we are going through an unusually stressful time right now, but it makes me wonder- what’s next? 

We have an appointment tomorrow with G’s neurologist and Wednesday with anesthesiology at the hospital where he’ll have his surgery next Monday. I’m really, really, really sick of going to doctors. I feel like Grayson needs a break to just be. We are living from one doctors appointment to the next, one ER visit to the next.

But- he’s resilient. Amazingly, by the afternoon, he doesn’t hold a grudge about being tortured in the morning. I don’t think I would be so forgiving. And he went to bed at 5:45 pm. I absolutely adore that kid.

GI follow up this morning. Ryan and I had already discussed that I was going to insist that we needed to be DONE with the NG tube ASAP. After last week’s fiasco in Savannah, our love-hate relationship with the NG is leaning more towards the hate side. We knew the probable next step is the G-tube, but I was expecting more resistance and “let’s wait and see” attitude from the doctor. I was prepared to be pushy and insistent (soooo not me at all) that the NG has to go.

Turns out, I didn’t have to be pushy at all. My conversation with the nurse:

“So how’s the NG going?”

“Well, it’s doing it’s job, but driving us nuts.”

“So you’re ready for the button?”

“Yes.”

“Ok, let’s schedule surgery.”

Ummm…ok. Thank you for letting me be my sweet, non-agressive self and save my energy for saving my squirmy, fussy baby from falling off the exam table.

I talked to the doctor for a long time, and he explained the procedure in detail. Grayson will have the initial surgery with a hospital stay of at least one night, then 6 weeks later, when the tube site has healed, he will have another out-patient procedure to get the button.

In his physical exam of Grayson, he commented that his liver seemed a little low and large. (Me: amazed that he can feel the size and location of his liver by poking around his tummy. Doctors are so cool when they aren’t being annoying.) Now this information of course made me a tad panicky…what? We have a liver problem now? Sheesh. Well, apparently, large livers are common in kids with mitochondrial disease. The funniest thing was the doctor pulled out his wallet and rummaged around until he found his liver ruler (so where do you keep your liver ruler? Did you know there was even such a thing?) and measured it. He didn’t seem too concerned, but did order a blood draw to test his liver enzymes. So once we left his office, we schlepped downstairs so my little pincushion could be stuck again. My new line for blood people: “Are you good with little ones? ‘Cause he’s a hard-stick.” Look at me, I have a line. Now, don’t ask me what I would do if I ever get “No” for an answer to that question. Thankfully, this one was honest and got his vein on the first try. I made sure she knew I thought she was awesome.

We left the appointment with a surgery date of December 29. Seriously, we have another MONTH with the NG? Gah. The nurse promised she would call me if another date opened up.

Two hours later, I had a voicemail- December 12 just became available! So 12 more days and I’ll be able to kiss those sweet cheeks again, sans tape and tube!

Now, don’t read this thinking I am excited that Grayson is having surgery. I’m not. If I could, I would feed him macaroni and cheese, chicken nuggets, fruit pieces, or whatever else is normal for 14 month olds to dine on. What a lot of people don’t understand about kids who have feeding tubes is it’s not just a matter of finding foods they like and thinking then they will magically start eating. If it was that easy, no kid would be on a tube. Grayson needs nutrition, and he needs it consistently. The best way for him to grow and thrive right now is to be tube fed. So because a feeding tube is our best way of getting G nutrition, I am thrilled he is getting a G-tube and getting rid of the NG.

And as always, thank you all for your continued support of our family on this crazy, unexpected journey.