It’s really not uncommon for children with spasticity or even low tone. We would spend many hours trying to get as many calories into him as we could. We finally started limiting our feeding times to 30 minutes because beyond that, we would both end up in tears and he would be burning more calories then gaining. No matter how often we tried to feed him, any weight gain was measured in ounces. It was a slow process, but he wasn’t losing weight.
The biggest reason we decided on a g-tube (feeding tube) for LJ was because everytime he got sick, he would lose any progress we made. Then, for some unknown reason, LJ starting gagging. The GI doctor originally thought this was a viscious cycle of being a little malnourished (which started to occur after two illnesses in one month). With both of these issues, we felt we didn’t have many other options.
I asked questions. I talked to other moms. I knew we weren’t doing it as a convience to us (although it has been a huge stress reliever). We discussed fundos (fundoplications- a “treatment” for reflux) and after some testing and consideration, decided against it (it’s a more invasive surgery then the g-tube). We made sure to stay 5 days in the hospital so he wouldn’t develop refeeding syndrome.
I didn’t realize the concerns we had before would be replaced by new ones.
In the hospital, we gradually increased his feeds until he was at 6 ounces of Pediasure, 5 times a day. Sometimes we fed him while he slept and he did very well. After a few weeks of being discharged from the hospital, we were told to increase to 7 ounces a feed.
That seems to be when the problems began. He started vomitting after the 3rd feed of the day. I thought his feeds were too close together so I cut two feeds down, one to 5 ounces and one to 6. The vomitting continued and even started after his morning feeds.
This is where we figured out how to vent him. Venting is basically taking an empty syringe, attached to a tube, that you hook up to his button (g-tube) and let the air out of his tummy. Like burping, but faster. This helped a lot, but he was still vomitting.
We tried staggering his feeds, trying to have more time inbetween to digest but we always ended up feeding him at least once while he was asleep. And this is disasterous since we can’t raise the mattress as high as we could in the hospital. I was so freaked out that he’d vomit in his sleep and not turn over or wake up. Unfortuneatley, insurance will probably not cover a hospital or sleep safe bed. Heaven forbid it be convienent for him not to choke on his vomit.
We tried to reduce his feeds back to 6 ounces a feed, but his vomitting persisted. Finally, we took out a feeding all-together and the vomitting greatly decreased (we also increased the other feeds to 7 ounces). He’s not getting the calories a nutritionist might say he needs, but the way I see it is he’s getting more then he was before the g-tube and maybe just as much after getting it because of the vomitting.
I was never told that a little bleeding from the g-tube site was normal (they finally told us after a frantic phone call). Or how much the actual button could move (quite a bit). Or the granulation (extra skin) that could develop around the g-tube site if the button moves too much. Or that oozing would be the normal.
I’m just frustrated that ALL of the medical professionals made it out to be like it would solve all of our problems. If it wasn’t for reading other blogs or talking with other moms, I wouldn’t have known about these issues beforehand. I think if I hadn’t known that there would still be issues we needed to manage, I’d be furious. I hope this better informs parents of what to expect.
Despite some of these (minor) issues the doctors failed to warn us about, I’m happy with our choice. LJ has gained 8 pounds since the surgery. He’s filled out, has more energy, and when he gets sick, we’re able to give him the fluids he needs. The downside is his oral feeding skills have decreased, but I think he may have been on this road before the surgery. We’re still working on it and hope to one day not be so dependent on it.
Please note that I am not a medical professional. This post was written based on personal experience in hopes to guide parents to be able to ask the right questions of their doctor.