Allergy doc was very kind; tests for soy and milk were inconclusive. After I got that news I was waiting for 20 minutes in the little exam room holding SCREAMING, inconsolable Lars & I had a little meltdown. It's odd, but I think it's more difficult these days to hear that another test was normal than to hear that there's something identifiable going on.
I then took crying Lars on the elevator ride up to Fegan 11, neurology. We ran into Tommy & his mom Cristin whom we know from Perkins & it was good to see a friendly, familiar place. I was quite distracted, though, and couldn't really carry on a coherent conversation.
I asked at the front desk about making an appointment with Dr. Coulter. They referred me to his secretaries, first door on the left. I stood just outside the open door, one foot in the office, knocked, and peered in. Both young women were talking on headset phones and staring at computer screens. Both appeared to hang up, redial, and make several phone calls in the 7 1/2 minutes I stood there. Mind you, Lars is hollering & writhing in my arms the whole time. Not one moment of eye contact. Not one acknowledgement that I was there. Not one smile & "I'll be with you when I can." Not one gesture indicating that I existed.
This is one of those moments when I think, "What the *&^# kind of place is this?" I've lived in Massachusetts for 11 1/2 years now and I still sometimes find it one of the oddest places on the planet. The level of disconnect that some people operate under here is just stunning to me. My apologies to you New Englanders & I do know it's only maybe a quarter of the population, and I'm trying not to make generalizations, but friends who are also 'from away' know exactly what I mean when I talk about this. I find it painful to experience.
Finally a secretary (who turned out to be from Japan) walked by and asked if she could help. I explained that I had a crisis on my hands & really needed an appointment with Dr. Coulter. She got me one at the end of May. Seeing my tears well up again & perhaps noticing Larsy's continued screaming she added, "I'd like you to talk with the nurse."
Okay, now we're getting somewhere. An extremely sweet and 8-months-pregnant nurse who has known Lars since he was 10 weeks old came in & was immediately attentive & empathetic, asking "What's going on?" and exclaiming, "This isn't the Lars we know!" She got us into an empty consult room, took the history of the current problem & listened to my reason for wanting to pull neurology in. She was very alarmed at Lars' level of discomfort & that they hadn't treated his pain seriously.
She said she'd be right back. In five minutes she returned having consulted with Dr. Sarco, Lars' epileptologist, who happened to be on Fegan 11 this morning at a meeting. He said he wanted neuro to consult & do some scans & sent us here to the ER. Being sent here from neurology carries a whole different weight than just showing up as an hysterical parent.
And it's actually a great thing sometimes to be in the ER during weekday daytime hours because you can meet with the senior really smart doctors who don't have to work night & weekends any more.
So the combination of Lars' demonstrated continued pain; mom's puffy red eyes & vocal insistence that they must take his pain seriously even though he's a severely delayed blind non-verbal 2 year old; the referral from neurology; the fact that many around here have seen us over & over in the past 2 weeks; and the daytime hours have served us very well on this fifth trip to the ER since Jan 3rd. Extremely senior docs in both neurology and GI have visited this afternoon, along with their flock of faithful fellows. We even got Sr. GI & Sr. Neuro to talk TO EACH OTHER. Shocking, I know.
GI really thinks it's neurological. Neurology really thinks it's GI.
So they have a plan: be very objective. Admit him for observation and testing. First will be two GI tests. A gastrointestinal tract endoscopy, looking at esophagus, stomach, duodenum, small intestine, colon, and bile duct. The other GI test, which they'll start while he's under anesthesia for the endoscopy anyway, involves something like an NG tube that then measures the ph of the stomach & reflux in his esophagus, and correlates that with behavior to see if it's reflux that is causing him such pain. They want him off all his reflux meds over the weekend to see what baseline is.
The neuro test that's planned so far is a spinal MRI. This also involves anesthesia, but they can't be done in the same location & he can't be transported under anesthesia.
Mr. Sr. Neuro Doc--one of these great white-haired guys with lots of hair in his ears & a zillion years of experience & a long memory whose 20x24 portrait probably already graces at least one hospital hallway--talked about something which none of the fresh-faced fellows had ever heard of when we inquired about it: depakote, Lars' new seizure med, back in the "old days" was called something like depacide. They found that it was highly irritating to many patients' stomachs, so they coated it. Hence "depakote."
However, very occasionally patients who clear their stomachs very slowly experience the coating dissolving while it's still in the stomach and if that's happening it could be very painful, especially if there is a small stomach ulcer. So now that he's on IV, they can give him depakote through IV sometimes and see if that solves the problem. We know from other experiences that Lars clears his stomach slowly. He takes depakote sprinkles, tiny little coated pills that we empty from a capsule and sprinkle on something applesauceish twice daily.
We have a fantastic nurse again who has taken wonderful care of us in the ER. She got Lars started on a bolus of IV fluid, which helped him feel a little better. And as soon as all the docs were done with their poking & prodding, she gave him the nice loopy med that they gave him yesterday (Versed), and he was finally able to calm down and go to sleep. Wow, did he need that--almost as much as I needed him to go to sleep. My back & arms & ears & brain & limbic system are trashed.
Here's Lars just after the loopy med:
Latest news is that we're going to 7 West, fairly soon.
Thank you so much for following along, sending thoughts, ideas, greetings, words of encouragement. Thank you.
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