An Untitled Post

This post is untitled because there are so many thoughts and feelings traveling throughout my brain that I truly have no idea what to call this post.

When Elijah was born he was diagnosed with Hirschsprung's Disease. A disease that would be treated with surgery. Back then, we went through all the fears of subjecting our 6 week old to surgery. We were assured he would be all better after surgery. And we praised God that he was!!! We met with the pediatric surgeon every 3 months who gave a thumbs up every time we saw him.

Right before Elijah's 8 month birthday, mother's instinct alerted me to something being wrong, when Elijah would grunt and get beet red in the face every time he had a bowel movement. We visited the pediatrician and I asked for a GI specialist recommendation, considering Elijah's history with Hirschsprung's. We talked about what was going on, I showed her a video of Eli's straining, a sample of his stool. Why not, back to the surgeon though, she asked? He gives the impression that surgery is done, everything surgically looks good, that's it and all that matters-a surgeon mentality I called it. I need a second opinion. Sure thing, our pediatrician said and then we were off to see a GI specialist who put Elijah on a laxative to see how things go. Initially, things went great. Eli stopped straining so much and we saw some really big poops. Had another appointment with the pedaitric surgeon-everything great, he said. At that appointment he said to bring Elijah back when he was 1, but probably not to him, since he would be retiring. GI specialist also said to bring Eli back when he was 1, after pediatric surgeon appointment. Colon probably needs to mature. At 1 we'll see how things go, and can hopefully start tapering down the laxative dosage.

This past week, we saw Elijah in a lot of pain every time he stooled even being on the laxative.

We're going to the pediatric surgeon on Friday, I kept telling myself. We'll get a lot of answers then. Prayed for answers. Got answers.

Elijah has Hirschsprung's Disease. Surgery is a treatment, not a cure. What I didn't know, what the first surgeon didn't tell me, what our own pediatrician or GI specialist didn't tell us, is that although the part of the colon with no ganglia cells is removed, then internal sphincter also has no ganglia cells and can't be removed, thus why Hirschsprung's is a lifelong disease. And thus why of late, Elijah has been constipated.

New surgeon told us there is no reason why a 1 year old with Hirschsprung's should be on a laxative. Also said that she constantly talks with Hirschsprung's patients throughout their life-unlike our previous appointments with the surgeon who gave the internal exam and said everything was fine; looking good; great. No communication.

Now what?

Either irrigations in other cases, but not for Elijah, or dilation surgery. Maybe once a year, twice a year, up to 10 times a year potentially.

Room spun. I cried. Got answers, although not exactly what I was hoping for.

I AM relieved. We have a doctor who explained EVERYTHING to me.

I am also angry. Anger at doctors for not helping me to fully understand this disease.

I AM thankful God gives maternal instincts (Holy Spirit) to guide us and make me jump to action.

Now what?

Lots of prayer this weekend.

Lots of communication with three doctors-pediatrician, GI specialist, pediatric surgeon, making sure they are all on the same page regarding Eli's care.

And lots of thankfulness. For my beautiful family, for the smiles that light up our life from 2 great, strong, fun, adorable, kids. For maternal instinct. For doctors who care. For Elijah (and Charlotte) being perfectly and wonderfully made.