Again

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.

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7 thoughts on “Again

  1. What a rough rough day. This is an unusually rough patch, a bump in the road, and while the road may not be straight, I am confident it will be smoother in the future. I have heard nothing but amazing things about the G tube and think it is going to be life changing for all. Sorry for the rough morning, so thankful that the surgery is soon and the NG tube will be gone. Hope the rest of the day was calmer and whoo hoo for early bed, needed by all! Love you.

  2. Oh Elizabeth. You poor thing. And poor Grayson. I can't imagine going through that again and again. I don't know what I'd do.I hope the surgery make things easier for you and your little boy. I'm so glad you got an earlier date and it will be happening in less than a week.Good luck until then.

  3. Hugs to you! You will replay those moments of "ER torture" 100's of times but he will be on to toys, babbling and napping. Soooooo, wish there was a fast forward on life in those moments. :-)Bridget

  4. Hang in there friend. One more week and you will feel such sweet relief. The g-tube is so easy to work. For us it's the puking/feeding solids part that's horrible. But the G-it's like the gas nozzle on your car. Easy! You are going through a rough time right now, but it won't always be like this. I'll be crossing everything that I have in hopes that that damn NG stays put.

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