fish nuggets, a little snooze

The afternoon hasn't been too bad- a little up & down, but mostly the valium seems to be keeping Lars' pain enough at bay. It takes quite a while to start working, and we haven't yet arrived at the end of an 8-hour cycle so we don't know what the last 3 hours will look like. Fingers are crossed.

Dr. Grandpa Uninformative came by & said nothing again.

Lars decided on the hospital fish nuggets for dinner & found them somewhat enjoyable. Put him right to sleep.

Someone remind me why they think babies prefer thin, tinny recordings? The hired caregivers hanging out with our roommate, who is an infant, are playing baby einstein CDs over & over, while simultaneously watching some extraordinarily odd show on which men are dancing or something in front of women who are judging them.

We had such a great nurse today. Leslie. Funny & wonderful.

keeping Lars comfortable in room 709

Lars & his Godmother, Lisa, after a good dose of loopy meds (just for him):

7 West has heard our plea to first keep Lars as comfortable as possible. He was on his favorite loopy med (Versed) on a 3-hour schedule all night & that went pretty well. They tell me it's what they use for conscious sedation. It only lasts about 1.5 to 2 hours, though, and it was given on a 3-hour basis, so each cycle had a chunk of time when his pain was increasing, peaking, and then decreasing as the Versed was absorbed.

It is knocking him pretty far out, so they've just switched to valium, which is longer lasting.

Dr. Grandpa Uninformative is on the case again. Came by and talked a blue streak, saying basically nothing. Lisa M., who had been here about an hour this morning by the time he arrived, remarked how notable it was that he said nothing she didn't already know. Yep. This is the guy who, when I was on the phone last Monday looking for any advice for my screaming babe asked if I'd tried pepto bismal.

Lisa & Kali both brought me darkroast this morning & I wasted no time sucking both coffees down.


Andey was here for about an hour, bringing the comptuer charger (the laptop was dead all night) & Joa, who spent the night with the Schwabs again. Lisa M.'s going to take Joa to meet Hanna for a movie and pizza this afternoon. If Lars goes to sleep I'll try to work more on my syllabi.

Somewhere outside the walls of this hospital room, the world is marching on.

Saturday work party

Andey has arrived and is blessedly rocking & singing to unhappy Lars, who woke up after loopy med wore off. We're still in the ER waiting for the tour to 7 West. [play Gilligan's Island theme music here: a 3-hour tour (thunder clap) the weather started getting rough...]

Andey wants me to post on the blog that she's hosting a 2-6 p.m. work party at our Mechanic Street house tomorrow, Saturday. 209 Mechanic Street in Marlborough.

frequent flyer ER miles

Got up after almost no sleep & scooted off to the food allergy testing appointment this morning. Lars slept on the way there, but I didn't. That's fortunate, as I was driving. We arrived a little early so Lars' fairly odd mama took a computer photo of him sleeping in the parking garage.

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.

take 2 advil and...

They poked & prodded & ran tests & gave him IV fluids & a sedative & 3 or 4 more prescriptions & sent him home saying give him advil every 6 hours & his labs are normal & they can't do anything else.

There has to be something else.

He's suffering. No child should suffer like this. He screams & cries & writhes & whines. Then he coughs & kicks & cries some more. He's gotta have a horrible headache on top of it all.

Lars' godmother Lisa had a good question: Would they take his pain more seriously if he could articulate it? Or if he could clobber them or run away? If he didn't present so infant-like, would they be less apt to subliminally think, "just a baby crying; all babies cry"?

I think there's some kind of big picture issue here that all of us are missing.

We've just been discharged from his birth-to-3 neurologist (DuPlessis), and moved to his 3-to-adult neurologist (Coulter) whom we haven't seen yet. Nonetheless I'm going to call tomorrow, and request a consult or urgent visit. Maybe while we're in the building at the allergy clinic (9 a.m.) we'll just take the elevator up a few flights & see what we can do. I keep thinking about the senior GI doc whom we saw very briefly as he rounded with his fellow, who said he's seen kiddos present as if they had GI pain & after a full GI workup, it turned out to be neurological. He then passed those patients on to neurology & didn't have any information about diagnoses, outcomes or treatments.

Lars' breath smells funny, like too sweet. Is it the pediasure we've been coaxing him to drink? Someone once mentioned to me that sweet breath is the sign of something bad, but I don't remember what, nor who told me. (If you're a friend reading this & it was you, let me know please.)

Here's the bonehead quote of the day: "You should try prunes." -Clueless local doc covering for our regular pediatrician. He handles Lars like you might handle a CPR training doll.

This is really hard.

Thanks for rootin' for us.

back to the ER

Just got the word from Andey that Lars has gotten worse all day today & is in more & more pain. They did another x-ray at the local pediatrician and his colon looks exactly the same as two days ago. He woke up screaming in pain again this afternoon, and Andey hasn't been able to get enough food and liquid into him to sustain him today.

They have arrived at the ER already. I'm going to leave work now, gather his meds from home, try to figure out what to do with Joa, & go to meet them at Children's.

on and on

Little Lars is just in a lot of pain.

And his days & nights are fairly turned around.

He slept yesterday (Wednesday) basically during the time that he was at Perkins and at respite, and then cried all late afternoon and evening, slept for a few hours between 8 & 11, and then cried & fussed until he fell back asleep about 5:10 this morning. Andey had him most of the night, and I took the last shift here before getting ready to go to work.

I wonder if managing his pain while awake is easier when it's quiet and dark, and he has just 1:1 mom time. Dealing with pain plus the rest of the world is so exhausting that he konks out more easily during the day, perhaps.

In any case it's awful. The milk & molasses enemas don't seem to be helping. His continued weight loss concerns me more & more. He's not able to eat or drink much, though we're able to...coax...enough in to keep him officially hydrated & out of the hospital & off IVs. Barely.

I was telling a friend on the phone last night that in the same way having serious pneumonia taught me not to take breathing for granted, this is teaching me not to take pooping for granted.

Lars is such a little sweetheart that during the moments that his intestinal pain gives him reprieve, he is totally ready to be happy and interactive and to celebrate life. He'll have a couple minutes like this and then you can see the pain streak across his body again & he dissolves.

New people & new situations will distract him for longer than the old moms at this point. Tamara came over last night & held him while we did dishes & swept the floor. It was wonderful. He ended up falling asleep & we took a picture for T's Aunt Boo:
Lars' screaming is definitely getting on Joa's nerves, and our frayed nerves are not helping Joa either. I did stay up late with him last night watching national geographic video podcasts & checking out previews of current movies. A friend graciously offered to take him to a movie & pizza this weekend.

And we started reading My Life As A Furry Red Monster by Elmo's puppeteer Kevin Clash. We needed something sweet & engaging & it fits that bill. The idea of reading about the childhood of the 6-foot black man who is responsible for creating Elmo's voice & character is fascinating to Joa.

J was also completely thrilled that a friend gave him her son's old Pokémon cards and book. And his Denise brought him home again yesterday, so they got some good time together.

When we were having our final snuggle last night, he talked about how much the time with Denise, the gift of the cards & book, the promise of a movie, and the time with me "without Larsman screaming" meant to him. The kid never ceases to amaze & delight his old Mama. He naturally struggles with feeling guilty about sometimes just wanting Lars to shut the #@*&^! up.

Don't we all.

okay, I'm gonna say it: I told 'em so

Tuesday must be rant day.

All day yesterday when we were on various phone calls with various Children's docs, & at an urgent care visit @ our local doc's office, I continually asked the question as to whether it wouldn't be a good idea to get Lars x-rayed again to see what's going on in his bowels. This, said I, would be the perfect time to find out exactly what is happening and how fast; it's 8 days after he was completely cleaned out, he appears to be having regular bowel movements like he did before, & if this is the same problem happening over again, which is sure what it seems like to me, then we should see it on the x-ray.

"No, no, we don't need to do that because he was just all cleaned out," quoth the doctors. It's not like that was a simple process: 3 trips to the ER + 5 nights in the hospital + an NG tube + an IV + 1600 mls of 'go lightly' + enemas every 2 hours + a whole bunch of meds. How about we check now before we have to repeat that cycle?

"Just take video tapes of him when he's in pain so we can take a look at them on the 25th." Right, or maybe we could just post them on youtube & we wouldn't have to go in at all.

Finally mid-afternoon today we talked with Lars' pediatrician on the phone--& he could hear Lars screaming (note to self: make sure screaming child is very near phone when speaking with physicians)--and because he's a nice guy who would like to do something to help Lars, he agreed to my wacko request to x-ray his belly again. Lars cooperated by having a BM right before he went for his x-ray.

Bingo.

Post-BM x-ray shows lower colon very dilated and totally packed with stool. So we now know we have a serious motility issue & we know it took 8 days to get this bad & we can take the x-ray to the GI appointment on the 25th. Pedi wants us to give him milk & molasses enemas (equal proportions) & go way up on his senna dose. Sweet Denise brought Joa home & then went to the store for us. A friend recommended looking into carnitine, which we will.

We go to the allergy clinic this Friday for food allergy testing, so perhaps that will shed some light, too.

Lars has eaten almost nothing all day, and has consumed very few liquids. He's all stuffed up from crying- or is it a cold, too? Hard to tell. His voice is all hoarse from all that screaming. Poor little guy, he's so miserable. Hopefully we can start interrupting this nasty cycle.

I was thinking it's ironic, but we may have caused some of this decrease in bowel motility by being more diligent about asking him to stand more and bounce less. Those of you who have hung out with Lars know this intimately: since he was 3 months old one of his favorite activities has been to stand (with support) and bounce/jump up and down vigorously. It's a lot of fun, but it won't get us to independent standing or walking. It may be that cracking down on bouncing meant interrupting his main exercise that helped keep him regular. Certainly moving around helps the rest of us. Since he doesn't stand or walk or crawl independently, perhaps bouncing was what was helping him. Help in one area, hold back in another.

Thanks for reading- g'nite.

they'd think it important if he were their kid screaming in pain

We keep telling Lars there's really nothing wrong with him, like the doctors say, but he keeps right on screaming in pain.

"How do you know it's pain?" they ask. "How do you know it's GI related?"

[in low, cartoon-ape like voice]: Uuuuh gee, doc, I dunno.

Like I'm 35 years younger than I am, let's say about 6 or 7, and I've never really considered anyone else's feelings much before. Like I don't know what pain looks and feels like, in myself and in others. Like I don't know my son.

"If he's still able to sleep some, it really can't be that bad," they say. "If it were that bad, you wouldn't be able to distract him with 'just singing,'" they say.

Just singing? JUST SINGING???

Hello? Do they not know that pain perception is not an inevitable result of stimulation of pain receptors? That it's a complex phenomemon that can be changed by experience and by changes in ones immediate environment? And there is nothing that changes Lars' environment like music, no experience that he has responded to as consistently as he has to music, and specifically to singing. Do these docs not understand that music is accessed by all parts of the brain, and that music affects pain perception through its direct effect on the ability of the somatosensory cortex to receive pain sensations ascending through the spinothalamic tract following reception by sensors in the peripheral nervous system?

Do they not know the gate control theory of pain? Do they not know how something that activates only nonnociceptive nerves (like singing or rubbing a bumped knee) can inhibit pain? The pain seems to be lessened because activation of nonnociceptive fibers inhibits the firing of nociceptive ones. In other words, paying attention to something wonderful, like your mom singing, occupies part of the capacity of Lars' information processing system, so he's not fully attending to whatever is causing him pain, and this reduces the perceived intensity of his pain. In this case we can take advantage of Lars' inability to attend to more than one thing at a time...

AND do they not know that health is directly affected by the physiological way the body behaves when the brain is or is not experiencing pain? That rates of healing are much faster when pain is under control, than when it is not?

I understand, dear doctors, that you clearly don't give a "red rat's rectum" (thanks to CBT's late father for that one...) that our beloved son is completely miserable most of the time, or that we are going NUTS and loosing our voices. But don't you dare tell me that just because we happen to be EXPERTS at the ONE effective treatment we have for pain around here, that our son's clear expressions of pain--and he's expressing a good 16 hours a day--are therefore to be written off as some bizarre behavior that surely will pass as he ages.


On another note, Lars decided this morning that riding in the car today & sleeping at Perkins were just lovely and fine, and that while he was doing those things everything was hunky-dorey. How about we just spend all our time driving him back and forth to Perkins? Hey, I'd do it in a second. He's been miserable almost every second of awake time before and after our morning at Perkins.

Anyone with a singing voice and rocking lap to lend, come on over. (All voices are singing voices!)

ouch, again

Larsman started feeling badly again late yesterday afternoon, and through the evening he was screaming off & on. He was able to move his bowels just before 11 p.m., felt better, smiled & fell asleep jabbering happily. This morning he started crying almost the moment he woke up & has continued intermittent painful cries all morning. It seems like reflux, where last night seemed like constipation.

This is the cycle the docs eventually settled on at Children's: constipation & reflux due to low tone (which is a neurological issue). We thought we had it under control with the addition of prilosec for reflux & senna for the motility end of constipation. Apparently this isn't enough to keep him out of pain, though. Is he backed up again?

Went to PT to see Alice this morning & cried a lot. We have an appointment with urgent care at our local pediatrician (although our doc is out because of the holiday) at 11:30. The nice nurse who called us back said, "Oh, I'm afraid they'll just tell you to go to the ER again."

I tried to find out the results of Lars' H.pylori test. The nurse on 8 West was able to tell me that the results were complete, but not what they were. I have twice paged the attending doc in GI at Children's in the last hour & a half, but so far no call back.

Andey reports from the field that Lars has fallen asleep & they're going to nap in the van until the 11:30 appointment.

Here's hoping he's at least having sweet dreams-

1:30 p.m. update: All the docs say is basically, "Too bad, so sad, I guess you have a kid in pain to deal with. It's not serious if it stops sometimes, it's not serious if he can go to sleep. Have you tried pepto bismal?"

Lars' new swing

This is who Lars is when he's not in pain.

post-bath nap

the "mama got Lars to eat from a spoon by putting nutella on it" series