A Day In The Life Of A Cotton: Goodbye Feeding Tube!

After a cancelled trip in January due to illness, we are finally back in Boston almost a year after our last trip. Lily and I arrived Tuesday night, had appointments all morning Wednesday, and she had her procedures today, Thursday. Tomorrow morning we fly back home, bright and early.

Since Lily has been eating everything by mouth since early December, her team decided it was time for her feeding tube to come out! She has had her gtube since she was 2 days old. Not the exact same one of course. We changed it every 3 months or so. But for the first time in over 3 years, Lily has no feeding tube!! Wow! Her team was thrilled with her weight gain and her skills with eating and drinking. Her height and weight are right in the middle or even a little more than the average girl her age. I can't believe less than a year ago she was still getting all of her food through her tube. I am so thankful that we found Growing Independent Eaters.

The surgeon removed the gtube today (easy part), but then he also surgically closed the fistula or tract that went from her stomach to outside her body. She has a dressing and some steri strips and she can't go swimming for a couple weeks. They said it shouldn't be too painful. She may need tylenol a few times a day for the next few days. Dr. Ngo did an EGD today and her esophagus looked the best it ever has. The diameter at her anastamosis (site where they connected the two ends of her esophagus) was 12mm. A year ago it was 10mm and he dilated it to 15mm. Today he didn't feel like she needed to be dilated. A year ago she still had significant esophagitis, or damage in her lower esophagus from acid reflux. We increased her reflux meds and that seems to have helped becuase she had almost no signs of irritation today. Big yay! Her hital hernia was unchanged. So it doesn't look like she's going to need the Nissen surgery, at least anytime soon. Thank you, Lord! She also had no food in her stomach which is great because we were worried about delayed emptying when her reflux was really bad at night all of a sudden. The erythromycin has been helping with that nighttime reflux a lot.

She also had a bronchoscopy today to check how her airways look. The pulmonologist said he was surprised with how well things looked there too. He said her tracheomalacia (amount that her trachea collapses when she exhales) was improved from a year ago. More good news! They did something called a bronchial lavage and sent lab work to check for some things. Dr. Ngo also took biopsies of her esophageal tissue. We should hear back next week sometime from all the labs and biopsies. We don't expect to find anything major, but the results may help with directing her care. Dr Ngo said she may not need to come back for another year or even two!

One of her appointments yesterday was getting fitted with a vest to help with her airway clearance. It's something that looks just like a life vest, but it's hooked up to this machine that shakes the vest (and Lily) to help break up secretions in her airway. I think it will really help her when she's sick with respiratory illnesses. We may not get the vest for another month.

It was a strange day for me emotionally. Honestly it hasn't felt all that exciting to me. Even leading up to getting her gtube removed I didn't feel all that excited. I think part of it may be that I know things can always take a turn for the worse again, but more so I think I'm dealing with some healthy kid guilt. I don't know if there's a real term for that, but I can't help but think about some friends both EA and those with other medical issues that are still in the thick of it. I don't know how to say this really, but it feels hard to really celebrate right now. This morning while we were waiting for her to go back to surgery, there was a 2 year old boy on the other side of the curtain from us who was going to get a port placed so that he could begin chemotherapy.. like what...

I almost lost it just sitting there listening to them. The nurse came over to them and said that they were going to have to draw labs before his surgery because the oncology NP wanted to check a lab before surgery. Everyone seemed to think it was unnecesary, but the provider was insisting. Drawing labs on an awake 2 year old when it's not necessary is just cruel. I could hear the pain and frustration in the mom's voice. It brought me back to some of the early days when Lily was in the thick of it. It sucks.

I don't know what else I want to say right now. I just needed to start writing some of it down.