Speaking Bean

Yesterday, the ENT resident was able to get a 5French (small tube) down Andi's left nostril. However, she didn't put it down very far.  They check placement of this type of tube with an x-ray.  The x-ray showed that she didn't even get it down to her stomach.  Don't know if she wasn't paying attention or what!?!  With the NJ tube, you want to get it down to her stomach with slack curled down there so it can work its way into the intestine.  She's had an NG and OG tube before, that goes directly into the stomach - through the Nose or Oral.  This one is a little more intense, as it's past the stomach and it takes a few days to work it down there.  Have I mentioned recently that Andi's in a class by herself though?  Oh yeah, the standard does not apply to the bean...she's going to set those rules.  The bean's nose was opened back in June, with a revision later that month to clear out scar tissue.  The fact that they couldn't get a tube bigger than a 5French indicates to me that they'll probably need to do another revision and clear it out some more.  It was explained to us in the beginning that most cases, the choanal atresia repair often requires 3 surgeries to get the passageway open and keep it open.  So, here's this 5French tube shoved into her nostril -- the nostril that is more open than the other.  Common sense would indicate that having something in her nose, well, that would make it more difficult for her to breathe.  Not only that, it's uncomfortable in the beginning, until you get used to having it there.  So, Andi wasn't having it.  She pitched a fit, and was inconsolable.  Not something you want of a baby you're trying get bigger... as pitching a fit causes her to burn more calories.  Not being able to breathe as well, despite being on minimal O2... again, not working so well.  They increased her O2 a bit last night, but we had to lobby on behalf of the bean.  Demanding that we rethink this plan. 

I understand why we want to do the NJ, and actually agree with it.  You bypass the stomach so you don't have reflux, and thus, loose the calories we're trying to get in her little body.  Also, when she refluxes, she's breathing so hard that she can inhale the formula coming up from her stomach.  This is called aspirating the lungs.  So, the NJ tube will help minimize the risk of aspirating the lungs again and causing potential pneumonia (what they think has occurred twice these past two weeks).  We need her lungs in tip top shape for the heart surgery.  Thus, I understand the need for the NJ tube.  However, again, Andi writes her own rules.

Apparently last night, sometime after we left, Andi bean pulled out her own NJ tube.  It wasn't in very deep, not even to her stomach...so that's easy enough to do. Even when one of her hands is bound with an IV in it and the tube is taped to her face.  The tube was making her work even harder at breathing, and I'm honestly a bit relieved it's out -- despite agreeing with the premise for inserting one.

So today I've made some demands.  I've been saying all week that I've felt that a lot of her spit-up and G-Tube leakage grew worse when they came in a blew up the G-Tube balloon more so.  There's a balloon on the inside of Andi's stomach that they blow up with water to pull the stomach to the abdomen wall.  They control the size of the balloon with water, and that helps make the tube sit flat and adhere to the ab wall more so.  However, for a little baby such as Andi, in my mind, blowing up that balloon on the inside of her stomach, even a small amount, leaves less room in her stomach for processing things like formula.  She's on small, continuous feeds -- 24 hours a day.  She gets less than 1 oz. an hour, all day long.  So, since they've blown up that balloon, it not only caused more spit up, but she's also had more leakage out of the tube site.  It's almost as if she gets any pressure in her stomach, it finds an exit out of a small part around where the tube exits her skin.  So, I've asked them to not only reduce the water, ever so slightly, to back to what it was... and I want her put on the infant gas med's four times a day again, as it was, instead of 'as-needed'...to help minimize her gas pains.  She's very vigorous with her pacifier and that, along with when she cries, is a time where she sucks in air.  Venting the g-tube hasn't really produced relief either.  It seems like the gas hurts her before it comes out, not when it's in her stomach.

So, there's a lot more detail than people probably want to know... sorry, this is my daily world... and I'm pretty immune to all we have going on.  Let it be said that all of us have the same goal... get Andi in her best possible shape for surgery.  Cardiology is going to revisit her today to see how she's doing, and make a final determination on Monday to decide if we're on for next Wednesday, or not.  The Dr. still wants to get the NJ tube in, but, not sure if/when that's going to happen.  I laid down some rules if we do try again.  There will be pain med's issued prior to... get her as chilled and comfortable as possible.  I understand the reasoning to do the tube, but I also have to advocate for the bean. She is sass-o-frass... and she's telling them, 'nuh-uh - I don't think so.'  Very few speak bean... that's what makes it very difficult to leave each night.