Parades, Pediatricians, and Poop

Oh Aaron. 

My sweet second born. 

You are a mystery of a kid. 

My baby boy is sick. 

Again, or still, I’m not sure. 

I won’t go into the gory details (because a lot of it entails poop in various forms...you’re welcome) but he’s been sick, seemingly, forever. It sounds dramatic and I don’t mean to sound that way and I know in the grand scheme of things I’m lucky as hell to have 2 ‘healthy’ children, but this poor kid seems to just keep getting pummeled health-wise in one way or another. 

It took us five years to figure out his first mystery, when he was finally diagnosed with Ehlers Danlos thanks to the amazing knowledge of his current pediatrician Dr. O. That was a hard 5 years and I felt like I paid my dues sufficiently to whatever mom-stress quota there was. Or not!

This most recent episode of “WTF is going on with Aaron” started way back in early October. Before my knee surgery. He had a “cold” with a cough. Cold went away, cough lingered. The week of my surgery came and his cough was still there (3 weeks of coughing at that point) so my mom took him to the doctor. Two months later we went to Pulmonary with a “cough variant form of asthma” as a diagnosis. Three inhalers, oral steroids and a diagnosis, ok we are good to go. Sucks, but I can do it. 

Less than a week later he starts with stomach pain and diarrhea.

 

Many doctors visits later, GI consult, testing, and no answers. But I now have a kid who has had intermittent severe belly pain, abnormal bowel patterns and stool consistency, fear of eating, fear of being too far from a bathroom, fear of having stomach attacks at school...for more than a month now. 

Yesterday he awoke with a high fever, headache and new cold/cough symptoms, and a bad bout of the belly symptoms. 

And on the same day as the Eagles Super Bowl victory parade no less. 

I was worried about this being flu, and I always worry that he’s not going to be able to fight whatever comes his way, especially recently as he seems to be fighting a cold every week for the past few months. Getting to the doctor was certainly interesting as the crowds in the city were insane...but amazing at the same time. I’ll talk about the parade more but wow what a day to be a Philadelphian! 

Luckily the pediatricians office was empty because no one wanted to go anywhere in the city! We saw a doctor who isn’t his normal doc. She was concerned (more about his belly) and wanted us to go the the ER for abdominal testing. The reality is that they wouldn’t actually do anything unless he seemed to have an acute life-threatening concern. So we were sent home with instructions to go the the ER if he gets any worse, and to come back and see his primary pediatrician (Dr. O) Friday (today). She also asked permission to follow his chart to see how this all pans out...she was concerned and intrigued. 

I’m grateful for an understanding boss who was fine with me staying home to keep a close watch on my baby last night. I really hate missing work though. 

So we went back to the peds today and are trying to figure it all out, seemingly the fever and headache is yet another nasty virus he caught, and the GI stuff was set-off even worse because of extra stress on his body from the virus.  I went today with stool samples in my purse (the yuckiest thing I’ve ever had in my purse, by far) hoping for a plan. As of today he’s lost 4 pounds since November. If you’ve ever met him, he doesn’t have pounds to lose.

 Ironically just a few days ago I had called Dr. O to tell her I’m not ok with “let’s see how this GI thing plays out” which is what GI wants to do. She agreed and was going to do some reading and get back to me with a plan. Well, I’d like to move that timeline up a bit because something is wrong with my kid and I’m not going to sit around and wait. 

This is exhausting and I feel terrible for my kid. 

We left her office today with orders to collect more stool samples (seriously the nastiest thing in the world). Keep him away from sick people (ha! I guess I’ll be homeschooling him). Keep up on the diary I’ve been keeping of his GI patterns. 

She’s pretty certain this is a chronic inflammatory process but whether it’s an IBS, or Crohn’s, or dysmotility combined with some inflammatory process, we have to wait and watch to get a better sense of what exactly is going on. We have to wait for his blood work to flip and give us an answer or for him to get so sick that they admit him to the hospital for testing.

 

Awesome plan. 

Really. 

I love the sound of this. 

Sarcastic tone implied

 I am not good at waiting and watching him be sick.  

Whatever it is, this kid will fight it. His tiny body has gone through a lot and I know he’s strong, but I also don’t want him to have to be strong. And while he seems to roll with the punches, I tend to crumble and have to pick myself back up every time. 

I am 99.999% certain that I have a form of Post Traumatic Stress reaction when he is sick. I stiffen every time I hear him sniffle. And then if it turns into something big like this, I get seriously rattled. I then think about every time he’s been in the hospital. His 8 years have not been easy ones. 

He was a sick baby. 

He went by ambulance to the hospital 2X before he was 18 months old. 

The things they thought he had as a baby when they couldn’t figure out why he was so floppy gave me nightmares for years.  

I started feeling like I was a crazy mom when he just wasn’t right but no doctor could tell me what was wrong so they started telling me to let it go and he was probably fine. 

There was a combined relief and sadness when he was diagnosed with Ehlers Danlos...there was something wrong with him this whole time (I’m not a crazy mom) combined with learning that he has a problem that will never go away. 

He swallowed magnets and needed emergency abdominal surgery...still not fully over this, and every time he sees a new doctor (pulmonary and GI most recently) they ask me where he came in contact with magnets like this. Me! His mom (Santa) bought them for him! Yeah. Still not over it. 

This past summer I watched him get pulled out in the ocean by an rip current and I barely got to him in time to pull him back in. 100% not over this. Still having nightmares about it. 

So, this is hitting me hard. 

That he likely has some chronic GI problem. 

On top of newly diagnosed asthma. 

Can he get a break?  And selfishly, can I get one too?

I forgot to talk about the parade. 

Sorry. 

Another day perhaps.

 But I feel better having gotten all of this off my chest!