Questions????

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.

First Day of School...

The picture says it all! I have always been so blessed to have a very safe, wonderful place for Annabel to go during the day. But as her needs have increased I am now so happy that she has nursing to be with her so the teachers can focus on the learning with Annabel.
Thank you to all who keep up with Annabel and for the prayers you send up on her behalf.

Long awaited appointment...

Yesterday was the day for our long awaited GI appointment. The doctor we saw yesterday had accepted us as his patient (we are so thankful). He is the one who actually did her motility studies in the hospital in May/June.

I will attempt to explain in layman's terms as was explain to us. What normally takes place on a person when there isn't a motililty issue is that the body does a chomping motion that chomps the food and moves it through your system. In Annabel's case this doesn't happen. It is due to a few things, not all totally clear yet. Her biggest issue is that in her system she has such poor muscle tone. In many of her areas she has retrograde activity when things move backwards and not forward. With the combination of the poor muscle tone not moving things much at all and the fact that they want to go backwards seems to be causing so much of the problem.

As of next week we will remove her G-button and replace with a GJ button and she will again be fed through her J port and then she will be vented through her G button. She will not come off the TPN as I had hoped and he cannot say at this time if she will become TPN dependant. We are looking at a couple things as far as more testing. They will be doing more enzyme testing, also another endoscope for more biopsies. We are also considering a port being placed at this time to allow us more freedom for Annabel to get into the pool for her therapy. Dr. C was very open to the possiblilty of upping her dose of TPN and just giving it 12 hrs. nightly. Overall, they aren't upping her dose but they would recalculate what she was getting in the 24/hr or 18 hrs/ infusions and give it during 12 hrs. while sleeping. He listened/explained so intently which we haven't always had concerning her GI. He also wants to see her back in a month so he can get to know Annabel and how she works better. Boy, how we don't hear that very often. There are some medication changes that we are going to begin. Everything right now will be trial and error trying to see if we can induce motility on our own. Her intake into her belly is only 20mls/hr. We are trying to keep something going into her stomach as we know that is what is best if possible. Due to much of this she is still said to have psuedo-obstruction. It is just what takes place when there is no/very little motility.

This probably sounds like not much to have waited for, but there is more to it (just can't explain). Also, we do have a plan of care and that is really all we need to know that someone is caring for her and trying to help us understand what is taking place in her little sweet body!

I have added a couple more pictures. One is with Annabel and her brother Derek when he came to visit. She loves when her brothers and sisters surprise her in the evening with visits. Also the next one is of Derek and Linzy after going out to eat with their moms. Cindy (Linzy's mom is so fun to hang out with!) We had been to their church with Derek and Linzy and heard a very dynamic speaker.