Thursday, September 16, 2010

Xander's GI Appointments

This is what the overall results from yesterdays appointments were. His Small bowel, barium X Rays showed no hiatal hernia or blockage. It did show his Gastroesophageal reflex. The results from the barium kinda freaked me out this morning when Xander had a bowel movement ( which was very painful for him and took about fifteen minutes for him to do,) was chalk white, with blood. That's happened twice so far today. I was so sure that they were going to find something wrong. I spent hours dreading it the day before, and was trying so hard not to break down while they were doing the X rays. We would go in and do some, and then wait twenty minutes, and do it again and again. It took one hour and forty minutes for the barium to go through his intestines. In the waiting room, watching children being wheeled on beds and cribs from surgery. I kept remembering how horrible it was for Savannah's. I would see her face on the ones of the other children. I remember how groggy she was and how small and helpless looking, then when I saw this baby,he was so small, he looked a lot like Xander. I started thinking that, that will be him, and that will be us walking next to our baby. I saw the faces of the worried parents, and the red and teary eyes of the mother. My heart went out to her. I wanted to give her a hug and tell her that I know how she felt and that everything will be okay. I overheard this family sitting next to me talking about how traumatizing it must be for all of the small children to go through surgeries and stuff, and I just kept my head down looking at Xander through watery eyes, trying not to start crying. I was thinking of him and Savannah. They are so strong. After our first appointment, my friend who works at Primary Childrens meet up up with us for a bit. It really made my day, and made me feel not so alone. I really needed that hug! Thank you!Yesterday our results were good, and I'm so thankful for that , but it's not over yet. In three weeks the surgeon want's to have a follow up and will probably do a biopsy to see if Xander has Hirschsprung disease. It is one of the secondary features of BBS. I'm so thankful that everything else is okay. The surgeon looked at Xander and then got out this long metal tube thing, and I'm not even going to say what he did next. It was so sad. I'm so glad that Xander is too young to remember all of this, because I'm even scared for life. Xander screamed and bleed some more and then he gave me a small plastic version of it, that were suppose to do at home once a day to keep him stretched out, and not heal back the same way. I'm not sure that I can do it, and I'm so dreading it. On the up side Xander gets to stop taking the Neocate formula,"Yea!" because it was making his gastro. reflux worse. The GI doctor was going to have us give him an antibiotic to help clear up his gastro. reflux, but I told her that he has already been put on an antibiotic every day for his Kidney reflux, so were going to wait and see if it will help clear it up in the next few weeks and if not she will put him on another on top of the one he's on. Over all, Xander is doing good with his GI stuff. Thank you everyone for your kind thoughts and prayers, and all of your comments of love and support. It really helps me to know that we have such wonderful friends and family who care so much and are here for us. I love you all so much. Thank you!
Hirschsprung Disease- Google Hirschsprung Disease Gene Reviews to find out more about the disease.
The genetics at PCMH say that they use Gene Reviews and trust their information over any other sites.


  1. I SO glad Cheryl was able to come visit with you yesterday. Its always so nice to know she is there. What a relief that the results from yesterday's tests were better than you expected. I know its terrible to watch your kids be in pain. Please keep us updated!!!!

  2. I am 58 and have Hirschsprung's. There is a long and happy life after the operation. I run a support group and can be found at

    Good luck with your and your child's journey.

    Gerry McGregor

  3. Seeing children hospitalized would be hard- especially your own- I can't imagine. I am glad everything is going well so far.