Annabel has now had her GJ button placed 3 times and each time within 48 hours it has come out. The G part of the button stands for gastric and goes into her stomach. The J portion is the goes into her small intestine. So last week for the 3rd time we had it placed again and by Friday it had coiled back up in her stomach. I am wondering if anyone has experienced this before and what their doctor has suggested.
Our local radiologist who took the extra to determine if it was out of place said that he thinks because she has all this retrograde activity in her GI system that her body is just shooting it back up and that it probably won't stay in place. She normally has a Ferrell Bag in her G port and is vented for continuously, then her formula is placed in her J port to by-pass her stomach.
I am sorry I haven't updated too much as of late, just not much to say. As of last week we had gotten her up to 22 mls. of her formula but her stomach wasn't working too well and she was experiencing more pain. We backed down to 20, then now at 15 mls. She is still on TPN as this is her main source of nutrition. I keep thinking I have my mind made up and that I am going to request she be taken off of this. My main contention with the TPN is her liver. Once the damage is done she will never be eligible for transplant and this is something she wasn't having trouble with prior to being placed on TPN. With TPN as I have said before, there is an upside which allows her to have proper nutrition and of course so much goes along with proper nutrition. She has been very healthy and no UTI's which was something we never got rid of. I just can't ignore what it does to your liver and that is my struggle as of now. I continue to be blessed with wonderful nursing which allows me some Cathy time, and 3 nights a week I am able to sleep all night!
All of the other kids seem to be doing well. The wedding is still on hold, maybe hoping for a fall wedding and Derek is finishing school. Tara has moved into her new house and doing lots of painting. She is traveling more with her job and still loves it. Tyler is home from Iraq, rested for a few weeks and now has begun school. Carly and Colette are loving college...but of course, school just began 3 days ago. My hope is the academic part is what they love, but somehow I am sure that it is the unsupervised living situation and possibly the parties....I just have to pray a lot and hope that they make wise decisions.
