Friday, May 15, 2009

Never A Dull Moment

Sometimes I wonder if good health will ever come back to our family.  I try not to complain, really I do.  But sometimes I think that I'm one big complaint factory.  Here's the latest.

*Disclaimer - This first part is all about poop.  Read at your own risk.  

Since bringing Nathaniel home, we have struggled to get him to poop regularly.  He never really has.  We have tried Miralax, enemas, different formulas, prune juice, etc.  Nothing seems to help.  He generally poops about every two weeks or so....and when he does it is awful.  He screams in pain.  The stool comes out hard and huge.  We just want to cry for him.  His stomach is very distended.  He looks like a little pregnant woman.  It is so sad!

I have taken Nate to the doctor and they have told me that it isn't unusual for micro-preemies to have issues with pooping.  Sometimes it just takes their little bodies longer to get everything working right.  They gave us new things to try.  We've tried to no avail.   

As you know, Tyler has Hirschsprung's disease and he has a colostomy.  Hirschsprung's is a genetic disease, meaning it is something you are born with.  There is a section in the colon and intestine that is misshapen.  Therefore, once the poop gets to that point, it can't go on.  The misshapen section is missing the necessary cells, called ganglion cells.  This prevents you from being able to poop, causing constant constipation.  Most children are diagnosed with Hirschsprung's shortly after birth when they fail to pass the meconium.  This is how it was for Tyler.  They realized right away that he was sick and he had his colostomy placed very early in his little life.

Sometimes kids aren't diagnosed until they are older.  I didn't realize this until just recently and didn't really think that Nate's problems could be Hirschsprung's.  However, I started reading more about it and realized that some kids are diagnosed later on.  I decided it was time to call Tyler's GI doctor and get Nate in to see him.

I took him in a couple of weeks ago and the first thing the Nurse Practitioner said was that she suspected Hirschsprung's.  I was really hoping she was wrong and that maybe there was some other explanation.  She did switch him to a soy based nutritional drink,  just in case it was a milk protien allergy.  She also ordered a host of tests, including a barium enema x-ray.

Nate had the x-ray last week and it showed the classic signs of Hirschsprung's.  There is a section, just near the rectum, that is misshapen.  The saddest part of the x-ray was seeing just how much poop is backed up into his intestine.  The radiologist pointed it out to me and I could clearly see it, all the way up.  It went almost all the way to his appendix.  That made me cry.  No wonder my poor baby is in so much pain and agony.  No wonder his tummy is so big.  After seeing that, I was almost hoping it was Hirschsprung's just so we would have an answer and be able to get him some relief!

The only sure way to diagnose Hirschsprung's is to do a rectal biopsy.  They take tissue samples from the sections that are misshapen and if they are missing the ganglion cells, that is the certain diagnosis.  Nate goes in on Tuesday for the biopsies.  Once we have the results, we will know for sure and we can make a plan.  He may have to have a colostomy and he may not.  It just depends.  Either way, we are ready and hoping that we can just get him some relief.  

Okay, that's the end of the poop story.  :)

As for the rest of our health foot is infected.  Not sure what that is all about.  I went in to have my stitches removed on Wednesday.  For a few days before that I had felt kind of yucky.  Running a slight fever, chills, extra tired, etc.  I thought maybe I just had a cold or something.  Apparently not.  The incision site is infected and there is redness all around there as well as in the ankle and foot.  My foot is swollen about three times the size it should be.  Needless to say, she started me on some strong antibiotics.  Hopefully that will knock it out.  Honestly, this darned ankle is just one frustration after another.  

The kids are sick.  Again.  Both Emma and Nate have yucky coughs, runny noses, and complaints of ear pain.  They are headed to the doctor today.  Tyler has a yucky nose but none of the other symptoms, thank goodness!  We are on constant fever alert for him but so far he has been doing well.  

I suppose that's it for my complaints today.  :)  I'll update as I know more about Nate.  As always, your prayers are greatly appreciated!!


Tricia said...

Well - Poop! I'm so sorry Jode. You are truly being tested. Know that you are in our prayers and thoughts. Wish you were hundreds of miles closer!

Ashlee said...

I don't think you're complaining - you're just stating the facts! Even if it was complainig, you have the right.
I hope they get Nate's poop issues figured out. I feel so bad for the little guy. BTW - I thought Ty was going to be able to have a surgery to fix his colon by now? Maybe I'm just thinking wrong. Best wishes. (Remember when you has to squish his colostomy bag for me? :))

amy flege said...

hope you are all starting to feel better. poor nate to!

Sheila said...

Get better to all! Prayers also:)

Rebecca said...

So sorry you haven't seen brighter days! I'm praying that everyone is feeling better very soon.