Sunday, September 12, 2010
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.