Tubey Time!

Major changes are up ahead for Lucy and I thought it was about time I posted an update. Lucy could certainly use all the thoughts and prayers you can offer.

We've spent the last year going back and forth between Lucy's various doctors trying to determine if its the right time to put in a feeding tube. Her weight has gone up and down and up and down, and then we've seen it stabilize. Her stomach just can't tolerate a large volume of formula which makes it difficult to get in the 40 +/- ounces a day that she technically should be getting. But at any rate, in the spring it seemed that Lucy had settled into her "new" growth curve and that, though her formula intake was low, it was just enough to keep her growing and going.

However, as the summer went on Lucy really started showing some signs of struggle. She was slowing down, having a hard time keeping up with the pace of other children her age, unable to tolerate the summer heat, complaining of headaches, and waking in the middle of the night screaming about leg pain. Shes pale, anemic, and has dark circles around her eyes.

Our GI specialist was concerned that these are all red flags for a Mitochondrial Disease and sent us on to a Geneticist. The Geneticist was appalled that Lucy did not yet have a feeding tube and was sustaining weight on such a small amount of formula. She felt that the bulk of Lucy's "mito-like" issues were really due to the fact her body just wasn't getting enough nourishment. She adamantly recommended that we immediately get a tube. She was so insistant about it that she even paged our GI on the spot.

So its off to the OR for a feeding tube we will go! The tube will go directly to Lucy's stomach and enable us to pump formula into her belly all night long at a nice slow rate. This will keep Lucy comfortable, hydrated, and give her all the calories she needs. At this point, its a relief. I spend my day constantly keeping track of how much she's had, when she can eat again, and trying to make sure shes getting as much as she can without over doing it. Our day quickly becomes ALL about the formula. And that is not a good quality of life, that's not a healthy normalcy.

Of course, I am scared for her and I am devastated she will be in pain for some time after the surgery. Its a pretty major surgery that will change her life. We have done our best to remain tube free, holding out hope that she would one day get food. Looking at the long term, however, its what is best for Lu. There is no projection Lucy will even trial foods within the next year or two, which leaves us stuck with a formula-only diet for some time. The decision to get a tube doesn't come easy at all but I want to see Lucy healthy, happy, and thriving, despite the formula diet, and a tube is the only way to accomplish it at this point.

Surgery is set for Oct 28th and we will remain inpatient for a few days post op. I will post updates as much as I can!

Thank you for checking in on Lu!