Wednesday, December 18, 2013

Hirschsprung's Round II - same problem, different kid

So poop.  Everybody does it right?  Right?  WRONG - not our kids!! Well, two of them can't anyway.  Alexis was diagnosed with Hirschsprung's and had a colostomy surgery, then a pull-through done before she turned one year old (remember this?)  Not a fun time.  I think we've blocked out all the negative things about that time, kind of like going through labor, thinking we won't have to go through it again.

Well, fast forward 5 years, and now we have Landon.  Everything seemed fine at first (it's been a fear with each one of the kids when they can't "go" or have a problem going that they have Hirschsprung's too) he went, we changed diapers, everyone breathed a sigh of relief.  Until October.  That's when he stopped going.  We thought maybe it was because we had started solids, and gave it some time, and Miralax, and glycerin suppositories.  A couple months of this, and after a referral to Children's Primary up in Salt Lake, and two biopsies, we have the conclusion that Landon can't poop because his intestines are missing the nerves at the end that help him "go".  Our next steps are:

  • Getting a contrast enema and X-rays taken in the next couple of days to determine how big of a segment is affected, how much/if any swelling of the surrounding intestines there is, and how much urgency there is.
  • Also on this visit, we get to learn how to do rectal washes!  Yayness!
  • Then once we have this information we will schedule his surgery.  We're aiming for just after New Years, since Kevin has to go back to school on the 9th, and Landon will need a few days (at least) in the hospital to recover.  We aren't sure if he will need a colostomy as well, or if they will be able to just do a straight pull-through procedure (remove the affected area, and then reconnect the intestines back together).  The second is the less recovery-intensive, so we are hoping and praying for that outcome.
Those eyelashes

I have mixed feelings about it all.  On the one hand, I am so glad that we found it early; some kids struggle with this their whole lives and aren't diagnosed until they're much older, which can lead to more problems later on.  He is little enough that he won't really remember it, and he can train his bowels while he is in a diaper still for quite a while.  He also isn't super mobile, so that will help him recover quickly and easier than if he was running or crawling around.  ON THE OTHER HAND, I hate that he will have to have any kind of surgery.  Even though the risks are low, they are always still there.  It also is super stinky (haha) that we are so far away from our families - we will definitely be needing some help!  Thank God for good friends who have offered to come to the rescue!

We are very blessed to be able to have insurance while Kevin is going to school to be able to take care of this.  We are also fortunate to have a wonderful children's hospital that is so close.  Please keep Landon in your prayers.  We will keep you all updated as we get through this together!