It's not very often I allow myself a pity party, especially offering it up for random consumption, but I find myself completely grossed out and upset from the appointment I just endured. First though, in my freshman high school English class, our absolutely adorable, first year teacher, Mr. Androsky, taught us the value of writing in our journals everyday. He said, it doesn't matter if you don't have anything to say, just start writing. This lesson I learned a gazillion years ago, made it possible for me to take any situation in life, and write about it -- just to put it somewhere while I process it. That being said, this is today's journal entry. And if you are feeling squeamish or are easily grossed out, then today's read is definitely not for you. I need to put this somewhere, and I need to share with Andi's friends, just exactly what she's going through. The good, the bad, and everything in between.
Today, we saw Andi Bean's g-tube surgeon -- the man that installed the g-tube. See, Andi's OT was here last week and said her g-tube was awful, leaked more than any she's every seen. She suggested I contact her Doctor, whom referred us back to the surgeon. We were called this morning for an appointment, and in their office just a little more than an hour later. I awoke the sleeping bean, and stripped her down so the assistant could weigh her, 11 lbs, 13 oz's! YEA! After which she pitched a very vocal 10 minute (or longer) fit. This fit, got the g-tube nice and gnarly, so I was rather glad that the surgeon would get to see what we're dealing with. When he came in and we caught up on the problem at hand, he got to work. **Again, I plan on being rather graphic, so ... consider yourself warned.** For those that don't know about g-tubes, it's a rather simple, but very intimidating device. Andi has a hole in her stomach that the g-tube sits in. The part on the inside of her stomach is a balloon that holds water. The balloon can be inflated/deflated to put it in or take it out. From the balloon, there's a plastic tube that is in between the balloon, and the button that sits on the outside skin. The button can be opened or closed with a stopper, and to feed her, we just plug into that device and the milk travels through the tube, directly into her stomach. We put a split 2x2 gauze under her button, to protect her skin. However, when the g-tube leaks, that gauze just gets wet and irritates the skin. We're constantly changing 2x2 and putting on this concoction of cream and powder, to help protect that skin. Since the Bean has been having teething fits, it has complicated things more so, because not just milk leaks out. No, a good crying fit can cause stomach acid to leak out, and that just burns the already irritated skin. Then it starts to bleed. So you have this leaky device, with skin irritation, bleeding, hurting and her clothes soaked. Well, I learned today that it gets worse. The surgeon took the water out of the balloon, and even though I've been trained on it, I've never done it. He had me do it, and honestly, Andi was crying so hard, she pushed the water into the syringe, not me pulling it out. So, I took out the water, and then he had me push it back in. I thought, 'ok, this isn't bad.' It was a lot like giving her meds... no big deal. So, then he takes over. He grabs a towel, takes the syringe again, takes the water out, and then completely pulls out the device. He quickly puts the towel over the hole, because the stomach contents start gushing out. Formula, mucus, stomach acid, blood. He lifts up the towel, although continuing to dab at the stuff coming out - which smells great, by the way. And we see the skin that the button hides. Her skin is completely raw. It's so incredibly broken down, despite our best efforts to protect it, it's just not working. He took this opportunity to educate me on how to put in and take out the g-tube. So I had to put the device back in, and thus, look right at this raw hole in my babies' stomach. The surgeon decided to try this patch to cover the skin. He said it might not work, but that we'd try that first. So, basically, I will have to deflate & take out the g-tube, completely dry the skin - after all the stomach contents empty, put a hole in this skin protecting patch, place it on her skin by pressing down rather firmly, then putting the g-tube back in, then reflate the balloon with water. I know this won't be bad after I do it a few times, but I find myself so completely grossed out that I'm making myself more and more upset. I told the surgeon I've done a lot of stuff these past six months that I never thought I'd ever have to do, but, here I am... about to master yet another thing so far from my bucket list. However, I've always said I'll do what I have to do for my bean. I'm just not very excited about this one. I keep wondering if that skin is going to be permanently damaged, so that one day, she'll be scared to wear a bikini. Her surgery scars are barely noticeable, but this tube could be in for years! (Until she is able to feed by mouth 100%). I'm just sickened by this new task. I hate that her skin is raw. I hate that she even has to have a g-tube. I hate that any of this b.s. is occurring. It's so unfair. And this task is just gross. It doesn't happen very often, but sometimes, I'm just completely overwhelmed with the sh*t we have to endure. I know it could be so much worse. Hell, I've witnessed kids fighting for life up at the hospital. I know we really should be grateful that she's medically better. It's just hard sometimes.
We've also been referred to a wound nurse, whom we'll go see to help us further with the raw skin. Andi's not allowed any tummy time until this skin gets better. The surgeon is not sure this patch will even hold. But, it's a two person job to do this, and I know her Daddy isn't going to like this task any more than I do. Again, I know a couple of times doing this, I'll be an expert and it won't seem like any big deal anymore. However, until then, I'm grossed out, frightened, and totally upset that we're even having to deal with this.
Okay, pity party over. I can't stand myself whining about things too long. Wow, how much I've grown.
On a good note, Andi is opening her mouth for the spoon and taking a few bites of food. She seems to dig it, but we really need to get quantity up. Which is probably difficult, when she's getting fed via g-tube every three hours. We have an appointment with her feeding specialist on Friday. Hopefully Andi will show her what she does for me. Hopefully, she doesn't do the 'say-it / spray-it' like she does with me. Nothing like some banana puree on the ol' glasses. Andi thinks she's funny though.
So there. Once again, Mr. Androsky's lesson from 1986 worked... I 'journaled' it and now, I feel better.