Friday, January 13, 2012

Back Up the Crazy Truck

The doctor called tonight and we spoke for a long time about Jack and what's going on.  I guess my head flew off before the nurse could explain that we weren't done looking for an answer, and that the behavioral thing is just one possibility.  Whoops.

I felt like a kid being called to the principal's office, honestly.  I'm also embarrassed that I've been insisting for so long that it's reflux and that, apparently, I've been wrong.  But it's something.  Just tonight, when BJ was getting Jack ready for bed, he started doing the cough again - the one that looks like this:

That video is almost a year old.  It's different now that he's bigger.  It also happens long after he has eaten, now, and not right after a feeding the way it used to.  My phone is charging and tonight if he starts doing the back-arching-coughing-screaming thing, I'll be ready.  He hasn't had any medicine, and he ate a bunch of junk for dinner (we went to another basketball game), so it'll probably happen.

Anyway, we're going to do some blood tests to look for H. Pylori and inflammation and Celiac's disease  and a bunch of other stuff that I didn't write down.  He said it might be irritable bowel or inflammatory bowel or ulcers or gastritis or any number of things, but the next step is blood work and stool samples (kind of, I actually get to personally smear poop on a card three times - fun! - to check for blood), so we'll do that.

He said he'd like to get an x-ray of Jack when the behavior I describe is actually happening.  I've thought about that and unless we spend a few nights in the hospital, I don't see how we could make that happen, because it doesn't happen every night.  It happened the night we fed him pizza for dinner, so we might be able to recreate the right conditions to get it to happen on cue.  But even if we were to throw him in the car when it happens (at 2 am!) by the time we got to the hospital it would be better, because he'd be upright in the carseat for the 20 minute trip, and hospitals don't move very quickly so he'd be upright while we waited for someone to take the x-ray, etc.  And since keeping him upright helps, by the time we could reasonably get an actual x-ray at 2 am, it would be over.

He said he'd be happy to refer us to pediatric gastroenterology, but that they'd want to order the same blood work, so we might as well do it here.  But if it continues, and if we can't find a reason, then going to Riley is not out of the realm of possibilities.

I'm glad he doesn't have reflux, I really am.  But I'm so frustrated that there's something wrong and I don't know how to fix it.  Is there any worse frustration than knowing that something is wrong with your child and not being able to fix it?  The responsibility of caring for the kids medically is starting to wear on me.  It's a lot to just take care of one body - now I have to take care of five (I'll let you guys guess whether I'm including BJ or Penny in that number).  It's a lot.  It's a lot to remember, it's a lot to keep track of, it's a lot of responsibility, it's just a lot.

It'll get easier as they get bigger and are better able to tell me what's going on.  But right now I just want to give this responsibility away for a little while, to not have to worry about all the well-baby visits and sick baby visits and the shots and the vitamins and the weights and the heights and the percentiles and the medicine doses and the allergies and the everything.  It's too much.

I also learned today that I would profoundly suck at being a doctor, so I can stop regretting that I didn't go to medical school.  I suck at dealing with people and I have no patience for them.  I also do very poorly on little sleep, and they like to make doctors stay up all night in medical school.  Maybe I would've been a good pathologist, since their patients rarely complain, but otherwise I can let that "coulda shoulda woulda" go.  That's a relief.

The best good news is that even though something is causing him pain, and it's happening fairly regularly, he is growing and thriving and it doesn't seem to be impacting his development or making him sickly.  Clinically, according to the doctor, Jack looks great.  (But that doesn't mean that we're going to stop trying to figure out what's hurting him, so, yeah... I can put my head back on).

I'm trying to look at the bright side, and not to get any more discouraged...  Thank you for all of your kind comments here and on Facebook and email.  I'm going to suggest the adenoid possibility, specifically, when we get the labs back, since two different people mentioned that.


mwiesjahn said...

I had gastritis as a kid. Which is just a good old-fashioned (extremely painful) stomach ache. They ran all sorts of tests and I was "fine.". Although I was 10 or so and could describe the symptoms. I took Prevacid for awhile and it finally went away.

morganna said...

Well, good luck figuring it out. Does it only happen at night? (Sorry if you've already mentioned that.) Because I think that would be a huge clue to whatever it is. I hope you can get this diagnosed.

Oh, and if the doc wants an X-ray of it happening and you think you could make it happen on cue -- could you spend that night at the hospital? And not put him upright when it happens, however long it takes? (Not nice for him or you, I know)

Rob Monroe said...

It could be a thousand things - a friend of ours found that her son was allergic to some of the things SHE was eating, and since she was breastfeeding she went to a gluten-free diet for about 18 months.

Hoping that they can track down the issue and get him to healthy quickly.