Friday, January 14, 2011

Two Steps Forward, One Step Back

We are continuing to struggle with Evan's GI issues.  We met with his doctor last week and he had gained a pound over the last month which was fantastic news.  Previously it was taking multiple months for him to gain a pound a keep it on.  I felt like now that we know his severe asymptomatic reflux was causing the majority of his problems and he was beginning to put on some weight, we were heading towards some resolution.  While meeting with his doctor though  the doctor also wanted to have Evan get an abdominal x-ray to confirm that he wasn't dealing with severe constipation again since his belly was very distended.  We finally were able to get the x-ray on Wednesday and today we got the call that we are right back to where we started before our previous hospitalization.  He is constipated, very constipated.  The frustrating part about this is that he has constant diarrhea.  Sorry for so much poop talk, I know my fellow SB moms will understand.  Anyway, often times when there is constipation, loose stool will move around the blockage and cause diarrhea.  Who would've thought?  So we are changing diapers and often outfits more than I care to even try to count.

We are going to attempt a "clean out" again.  Hopefully we will be able to accomplish this at home this time.  Now that he has the NG tube in place, there isn't such a concern about dehydration which gives us a lot more flexibility with what we are able to accomplish at home.  This is not a fun process, but I am hoping it works.  If we can get him cleaned out then we will head back to the drawing board with our doctors to create a bowel program to keep him regular.  Our regular doctor was out of town today when we got the results of the x-ray, but the doctor who called to go over the results with me, brought up the possibility of daily enemas.  It saddens me to think how much my poor baby has already gone through and what still lies ahead.  Yet, despite this all he is always so content and happy.  So many people in this world would benefit if we just knew his little secret to choosing not to let Spina Bifida get the best of him.

We go on Monday for an Upper GI study with a small bowel follow through.  The doctors are looking for anything structurally which is contributing to his GI problems.  Almost all people with Spina Bifida have bowel issues, ours just seems to be the complete focus of my time right now.  I spend hours a day talking to different people about his poop.  I am thankful that we have great doctors and nurses who always return my phone calls and emails.  We are blessed to live in Denver and have an incredible Children's Hospital less than 10 miles from where we live. 

Praying for some answers with this testing coming up on Monday and that this "clean out" works and doesn't earn us another hospital visit. 


  1. I am glad to hear he is somewhat better. I am sure the doctors will get things figured out soon. Keep your head up. We will be praying for you.

  2. Hope you start getting some answers soon!
    As a fellow SB mom I completely understand the importance of poop!
    After everything that is thrown at our kids I am so amazed at how much they take in stride and remain happy! I think it's to help parents not to stress out too much!

  3. This is SUPER scary to read. I can't believe that he is already backed up again. You must have been so floored! I am now so worried this will happen to us again. How has the at home "clean out" been going? I hope it's doing the trick and Evan is doing ok. Annabelle has become a pooping machine now that we are home from the hospital. It's weird since we only used to have the nightly poop after the suppository and now we get it with EVERY diaper change. We are now taking 2 does of Lactulose daily as well as trying to get her to eat high fiber foods. I pray it will continue to work.

    Have they thought maybe he has a poop infection that is causing the diarrhea? Annabelle had C-Diff and that is what they are attributing her diarrhea to. I certainly don't want him to have that but it's might be worth requesting a test. It was crazy when I read the symptoms of C-Diff:
    no appetite, low weigh gain, diarrhea.... I'm like "hello people - this is Annabelle!"

    Ok, just wanted to reach out and let you know I was thinking about you both. Your help with Annabelle a few weeks ago was wonderful and I will be forever grateful for your guidance. Also, thank you for the high calorie food papers - they are VERY helpful! Let me know if I can help you in any wey.

    Sending lots of hugs your way!!