That’s right, Lucy is now the proud owner of gj-tube lucky number eleven. Lucky that is, if it stays in place for longer than a day. Last week after a very frustrating motility week, we made an executive decision to not place another gj-tube, and instead place just a g-tube. It was obvious that Lucy’s body was not going to allow us to keep a j in place and since we have so many decisions on the table right now as to what direction we are going to go with her motility issues, we thought we would stop all feeds, drain her belly, and try and give her meds via her g-tube. We knew that things would be uncomfortable for her, but aside from placing a new gj-tube every day, it was our best option. After a few days of this, our best option was not working either. Meds were not getting into Lucy, after administering her meds and clamping her drainage bag for over an hour, when you went to unclamp it meds came pouring out into her bile bag. In addition, Lucy has so much pressure coming from her belly that we could not keep the extension tubing connected to the g-tube. It continuously kept popping off leaking bright orange and yellow bile on everything. The color of her bile was enhanced by her meds just sitting around in her belly making Lucy miserable.
After stain treating everything Lucy wore last week, every shirt I wore last week, every sheet she slept on and blanket she slept with, and spot cleaning what seemed like every square inch of carpet in our house, I contacted Lucy’s doctor and asked if would could try and place another gj in Lucy. The mess was one thing, but the obvious discomfort our little girl experienced was enough to send this mama over the edge. If I haven’t already told you how wonderful our doc is, let me just tell you he is! After stressing to him all that we had experienced, he said to me “I am fine with placing another gj…I think that we should keep going, I am always a fan of keeping going!” He is almost always optimistic, even when our options are getting fewer and fewer. The only time I saw him look defeated, was the day he told me that we had no longer had any options with regards to feeds, Lucy needed to have a more permanent central line placed and go home on TPN.
While placing Lucy’s newest gj-tube the radiologist was able to take enough pictures of her anatomy that we did not have to do an actual upper GI study. Those of you who have a kiddo like ours, where stuff just sits, and sits, and sits around in the GI tract know that barium, which is used for an upper GI, is not a good thing for a GI tract like our little ones. I was so happy for Lucy, and well…frankly for all of us that have to be around Lucy, that she did not have to have barium on Monday. If you let barium sit in the GI tract for any length of time, it can turn to concrete pretty darn quick. Drastic measures need to be taken to rid the body of the barium, and I for one and Lucy for two hate the drastic measures we have to use to get rid of barium.
We are off to CHOP today for our pre-anesthesia appointment for the antrodoudenal manometry study that Lucy is scheduled to have preformed on Monday. I’ll be honest, we are still not sure we are going to do this, but we are leaning towards it.