LE turned 2 years old last week. Holy crap! 2 years old? When did that happen?
In true “US” fashion, she decided to spend her last day as a 1 year old keeping us on our toes. Her home nurse was here that morning. I had noticed that LE seemed a bit more upset when I gave her morning meds through her g tube. I brushed it off as a fluke. However, when her nurse arrived, we went through our normal routine. She got weighed, vitals taken, creams applied as needed, and bolus of fluid given. (NOTE: a bolus is a single feed through her g tube. This is done with a syringe and an extension, with the liquid poured into the syringe, which is held up, and gravity pulls the fluid into her belly).
None of this was new or different from what we do any other day. However, she screamed every single time anything went through her tube. She had already showed some severe reflux (stomach contents moving out from the belly rather than just air). When the tubing was unclamped (therefore allowing fluid to run into her belly) she screamed and got defensive of her g button (putting her hands over it, etc). As soon as it was unclamped, she would settle. We usually bolus 300 ml (10 oz) of fluid such as EmergenC (seriously, she can use all the vitamins and probiotics she can get!). We gave up after roughly 60 ml (2 oz). Her nurse called her pediatrician after she left, and the pediatrician wanted us to be seen.
So off we went to the doc. She was very distended and doc sent us to the hospital for abdominal x-rays. One of our concerns was that her button has shifted out of position, which would be horrible and require surgery to fix. Thankfully, that proved to not be the case. She was completely backed up with poop. Her entire intestines were full. It was terrible. What makes it more frustrating is we just did a cleanout of her intestines not too long ago (maybe a week and a half?). So we had to do another system cleanout (unpleasant for everyone) and it seemed to help a little bit.
Unfortunately, at this point in time, all we can do is try to keep her tummy vented as much as possible, use enemas and suppositories as necessary, and wait for her next appointment. She has an appointment at the Children’s Hospital at the end of the month to see the Aerodigestive team. Plus her regular gastroenterologist (GI) is working on scheduling a motility study. That will show us how her system moves food and waste through. We are not yet sure if the issue is at the stomach (is does not empty quickly) or her intestines (do the muscles not work right? Is there a lack of coordination somewhere?).
Either way, we ended another year of life with some excitement. She likes to keep us on her toes that’s for sure!