Friday, August 3, 2012

Referral to Feeding Clinic

The surgeon called back, and gave me the phone number for the feeding clinic at Strong Memorial. They are such a fabulous facility - the ability to email your doctor and the fact that they actually call you at home is fantastic. In any case, we have learned a few things. One is that Nolan is not taking in enough food - at the moment they don't care about the nutritional quality of the food as much, since we simply need to get calories into his body. Obviously the nutrition is needed, too, but he is not a case of sensory food aversion or other behavioral issues- his stomach simply cannot handle a normal quantity of food at any one time. It's not a great picture, but you can see the bloating that occurs when he tries to eat a sandwich:

His stomach cannot digest the food fast enough and he becomes bloated. This causes pain and nausea, which prevents him from eating more. It can take 2-3 hours for the bloating to go down. I will sometimes vent via his g-tube to remove air from his tummy, but we don't want to vent off the food he just ate. So it is a bit of a tricky business, but we are usually able to get the air out and then allow the food to go back in by gravity (at least, as much of it as his tummy will take).

The bloating can get so bad that it will actually push his belly button out. Once we vent he usually feels a tiny bit better, but it is a difficult and frustrating process.

Nolan currently needs 600 more calories per day to obtain growth. His weight and height are stunted, which makes the situation a bit more urgent. The body uses energy for the brain first, height second, and for putting on weight third. When both the weight and height are affected, it indicates his body is not getting enough energy for proper brain development.

We cannot get those calories into him with regular food. We are feeding him as often as possible and it still isn't enough. The solution to this problem, at least for the time being, is to slowly give those extra calories overnight. When (and if) he is able to get those extra calories in by mouth during the day, we can wean down the tube feeds.

The nutritionist was willing to meet with us over the phone since he has such a medical history, but I always prefer to meet the people in person so they can meet Nolan. I made an appointment for August 21 and we will drive up to meet the nutritionist and discuss his history.

In other news, his hearing is still touch-and-go out of the right ear. I think the infection is healing, but we still get a significant amount of feedback if we put a hearing aid in that ear. I am still very hopeful the infection heals before we fly!


Melanie said...

I have no words other than I am so glad you found Strong Memorial!

TheSweetOne said...

Go for it Mom. You know what's best for your kid and right now - calories, however he can get them - is it. Nothing wrong with having a feeding system if it works! (psst... remember that it's okay to be mad and howl at the world and grieve too for all that you and your boy have to go through...) <3

Herding Grasshoppers said...

Wow, Leah. I'm hoping that as you give the calories at night he'll get bigger and able to take more calories (by mouth) during the day as he grows. You can do it - you're a great mom and the boys are lucky to have you.

Praying the ear infection resolves before you fly,


dlefler said...

The minute they said "it can affect the brain," I was for the overnight feeds. I am sending his surgeon a pic of Nolan's bloated belly, so they can see it (it's never been very bloated for office visits, which are few and far between). We do have a good team, so we'll just take this one day at a time. Nolan seems happy enough today, thank goodness. Hopefully he'll be fine by the time we fly.

Kyla said...

I hope it goes well! Have they discussed a motility med trial yet?