The downside to your child being admitted to the hospital on a weekend for an issue that requires the consultation of a variety of specialists is that there are no specialists around to consult.
We literally spent almost two whole days doing absolutely nothing about the problems Brenna has been experiencing - aside from the general monitoring of her vitals - so by last night, I think the hospital staff was well aware that we were expecting some things to start happening first thing today :)
The main issue at hand is that Brenna's eating has been on the decline for the last couple of months, causing a slow weight loss or plateau, with more rapid weight loss in the last week or so. After we placed the feeding tube through her nose on Thursday, she was experiencing constant gagging and vomiting with a lot of mucus.
Finally today, I had had enough of the tube. My general feeling for the last couple of days is that while the tube is giving us access to her stomach, it seemingly is also causing her to throw up. So even though she's not eating enough on her own, she's also not getting enough via the tube because she throws it up. After she had thrown up literally her entire 3-oz. feeding, we kind of just told the staff we were pulling the tube, and that if that didn't alleviate the gagging and vomiting, we could always replace it. And they let us :)
We also are moving ahead with the g-tube, which is going to be done here in town. Even though this procedure will require sutures, the sutures will be down in her other layers of skin, which are functioning properly; it's really only Brenna's epidermis (the top layer) that is affected by her condition.
I understand that the g-tube is important now in order to get her weight back up and increase her nutritional needs, but I don't want to lose sight of the fact that she was eating well, and now she's not, and we really need to figure out why. And I have expressed this concern to most of her docs, so they know where I stand. Something is definitely wrong.
There has been some disagreement between some of her specialists regarding why she's not eating, with her feeding team suggesting that possibly Brenna has developed an intolerance to the formula we use to fortify (Alimentum, which is a very "sensitive" brand). While some of her other docs have their doubts about this, I think with her history of formula intolerance, we should at least entertain the possibility of this.
So we are going to try a trial of Elecare, which is a type that lacks any form of allergens, and if Brenna does well with this, we might just have our answer. If not, then we have at least ruled out that possibility.
I'm just glad we have a plan in place after playing the waiting game for the last two days. Brenna's surgery for the g-tube will be done this week, so I would really appreciate prayers that all goes well. Thank you all for your support while we hopefully overcome yet another hurdle :)