Wednesday, September 1, 2010

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.

8 comments:

Lynn said...

Hi Cathy,

I'm glad Annabel is doing well, but sorry you are still struggling with tough decisions.

I have read that one of the theories for why TPN causes liver damage is that the essential fatty acids are out of whack for the body's requirements, with a large excess of omega 6 fatty acids and under-nourishment of omega 3 fatty acids.

I am no medical expert but keeping up with the latest in nutrition research is a hobby of mine. I don't know if you have looked at or perhaps Annabel is already on Omegaven, but I thought I would bring it up for you: http://en.wikipedia.org/wiki/Omegaven

--Lynn

ANewKindOfPerfect said...

The gj-tube never worked for Emily either. It always ended up coiled in her stomach within a week. They told me it was because she retches so hard constantly, that it comes up. I don't know, but we had to give up on it.

I hate making decisions like you are .. tpn verses liver verses nutrition verses ... Boo. I hope you come to a decision that is best for Annabel. I know you will actually, I don't hope! :)

Stacy said...

Cathy,
I am so sorry for the difficulty with her GJ tube. I pray that God gives you answers quickly for that and the TPN, so that your mind will not question, but be able to rest in the answers and direction He is giving you. Keep looking to Him alone.

Much love in Christ,
Stacy

Laurie in Ca. said...

Annabel looks so good and I hope they get the issues taken care of soon for you girls. And I will send up prayers from time to time for the College girls to stay the course and not get side tracked with every day stuff. I think they are already too smart for that. Love you Cathy.

Love and Hugs, Laurie

Amanda Timpson said...

Cathy, I love you and pray for Annabel and your family everyday!

Laurie in Ca. said...

Just stopping by to let you know you and Annabel are in my prayers. I love you.

Love and Hugs, Laurie

Anonymous said...

Cathy,

A g-j tube never worked for Ash either. Only a g tube could manage to stay in place. As for the TPN versus the liver. We are personally living the nightmare of liver disease associated with TPN. I know you've been following. My suggestion would be that if you can get her on Omegaven then I would. I thought I read that you guys were using a team out of Houston? If that is your GI team then I would inquire about switching her intra lipid over to the Omegaven as soon as possible. We are desperately trying to get it for Ash to buy her some more time hoping it will allow her to make it to re-transplant. Other than those issues it looks like Annabel is well? She amazes me. Truly she does. I love that she is going back to school. LOVE the normalcy it provides for her. My hope is that someday school will be an option for Ash, but right now things are just so unsure. Ashley's tryke is an AMTRYKE. Supplied by the local Ambucs group. If you have one in your area contact them and get her on the list for one. If you don't have one let me know and Dave and I will do whatever we can to make sure Annabel gets one. I would love to see her riding. It brought such joy to Ashley Kate's life. Love seeing updates. Love reading the encouraging messages you leave on Ash's journal. Love you girls. Take care. Trish

Kathy said...

Cathy I can only imagine how difficult all these decisions must be. So many variables! Hope that some of the moms who have all ready dealt with these issues will offer some wise counsel.

I pray you get the answers and the medical advice that you need to make the best decisions for your precious girl.

Glad to hear the rest of the crew is doing so well. I am sure your twins will make good choices but may occasionally make some not-so-good ones that they will be able to learn from. I will pray for them and for you and all the moms who have young adults at college. Prayer will keep you sane sweetie!!!

Glad to hear you are getting some sleep and Cathy time! Thanking God for the wonderful nurse(s).