It’s Friday and Ava is still resting at Arnold Palmer Hospital, recovering from the cold virus. She was scheduled to get her feeding tube (through her stomach) this past Tuesday, but the anesthesiologist would not proceed out of caution because of the cold. Since Ava has always had difficulty getting enough fluids in her (thus the purpose of the feeding tube), we have kept her here at APH to allow her the rest and fluids she needs to fully recover.
Feeding Ava has for sure been one of our biggest challenges since she was born, and it’s still the most time-consuming piece of her care. Those of you who have been in-person with us over the last 18 months probably have a little idea of what we mean.
We’ve come to the decision that we need to get Ava a feeding tube, and it’s finally scheduled for next week. So many professionals have praised us for our good job of feeding her and have said how great it is that she doesn’t need a feeding tube. Thus far we haven’t had to do anything medically invasive with Ava and everyone said that was really great. (It was.) But finally this fall some of our specialists really heard us when we said it takes 4-5 hours to feed her daily, with no relief in sight…and even then, she wasn’t getting enough fluids, and by now was no longer gaining weight, either.
When they really heard us, they stopped congratulating us and suggested a feeding tube. I’m not sure I’ve ever been so relieved to have someone stop telling me I was doing a good job. There was a time when I might have considered the tube a result of our failed effort, but it feels nothing like that really. My goodness, we have nearly been brought to the end of ourselves trying to feed this child. It is not worth the sacrifice to our family life anymore.
It’s best for Ava’s health that she gets the tube, and we are at peace with the decision.
The tube means she’ll be able to get nutrients, fluid and her seizure medication directly to her stomach when she needs it. We won’t have to be at home to give her fluids – something that has controlled our schedule for a long time.
The tube does NOT mean is that we’ll quit giving Ava food or give up on her eating and drinking as she grows. She loves her purees and we will still let her enjoy meals. Now we’ll also have time to work on her oral therapy again, with a goal of her eventually eating and drinking independently.
The tube will be on her abdomen, not down her nose. At first it’ll be a longer Foley tube, and after her body adjust it’ll be changed out for a small Mic-key button.
Ava’s feeding tube endoscopy will be this coming Tuesday, Nov. 10th. The procedure should be short and simple, but we have to stay at the hospital for a couple of nights while they help her body adjust and show us how to use her new equipment.
I’ll try to update as to how she’s doing. This is not a high-risk procedure and we don’t anticipate problems…just might make for a long week for us all. 🙂