An apple a day...

Annabel is back on TPN and Lipids. She is off of any thing into her gut unless it is medicine. They are trying to rest her gut again in the hopes that it will help it to begin working again. She is doing fine and seems so happy. That is the crazy thing about TPN/Lipids. She is stronger and outwardly healthier than ever. I try to just look at her day to day and enjoy all these strong hugs and kisses she love to give. She stands so tall now and is doing well in her therapies. She isn't weak like before the TPN. But in my low times I get too focused on what is happening inside of her with the TPN/Lipids and her liver. My sweet nurse constantly reminds me to focus on quality of life, meaning today. I am trying and she makes sense! I am still desperately praying that she will again take food into her precious tummy.

The pictures below were in celebration of Derek's 29th birthday. Oh no, I can't be that old! But I wouldn't trade a day of being this old, or wouldn't have my oldest and first born son! Linzy's family joined us for his birthday along with my Tyler and Tara. Of course, Carly and Colette are off at school. Cindy, Linzy's mom make the most wonderful red velvet cupcakes with the creamiest icing. Thank you Cindy for supplying Derek's birthday treats and for David joining us after a long hard day at work!

Just a quick update...

One of the things I keep forgetting to mention and am very thankful for is that Annabel hasn't had a UTI since she was released from the hospital. This is probably the longest she has gone without a UTI. Her urologist commented on the fact that probably the TPN is keeping her very hydrated. But in his next sentence he says "but you gotta get her off!" But for the issues of UTI I want to be so grateful and thankful that we aren't dealing with these. She is also still taking Bactrim, a prophylactic dose once daily to help with her bladder.

I am thankful for those who wrote to answer my question, through your comments or email. Several have suggested Omegaven which supposedly doesn't harm the liver as much. This is in trial testing and at this time Annabel is not eligible as this isn't being given to kids her age. It maybe that she isn't severe enough yet to be considered. Also, for those who told me that their child couldn't tolerate the JG button either.

We did see GI last week (still likin' our new GI dr.) and guess what, yep, that JG button for the fourth time was out. He says she just can't take it, between all the retrograde activity and her gagging/retching he says it will not stay down. This last time he used one even longer and within 48 hours I knew it was out. He also cut her back to 1/2 dose of Erythromycin but thinks she won't be tolerating that either. We are down to two meds that aren't FDA approved and when I read all the things that it can affect, like cardio, pulmonary hypertension, urinary, renal, etc. I don't think I can do these last two. She is back down to 15ml. per hour and not tolerating that all the time. He is placing her back on TPN full time and also adding Lipids back. He says he really doesn't know if she will be able to eat and tolerate foods in her tummy. Annabel will be having a procedure to excise a fatty cyst from the back of her right ear. She has had this since birth but now it has begun to grow and come through the inside of her ear. We are not worried and I feel confident she will come through this like a champ. At this same time the GI dr. will go back in for some biopsies of things that he wants to look at again.

She is going to school most days and loving it as she always has. Our three nurses are so much help and I am so thankful for Debbie, Rebekah and Ashaunti!

I am really excited about getting to see the twins, Carly and Colette this weekend. We haven't seen them since we help them move in. Carly and Colette never really liked being away for long period of time like summer camp so this is long for this mommy! I am thankful for Tara, Derek and Tyler who still come almost daily to visit.

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.