hospital happ'nin's

Going back & summarizing what's been done... (last edited 2/19, 3:30 p.m.)

Motility:
Wednesday was the gastric emptying & motility study. Basically we crammed radioactive scrambled eggs down Lars' throat, very quickly, then rolled him, screaming, in a sheet & taped him down tightly on a flat conveyor belt with a camera underneath. He was required to stay completely still for over an hour while the camera took photos every 30 seconds of the radioactive eggs moving through his stomach. He screamed basically the whole time.

Test showed that while Lars has slowed stomach emptying, 73% of normal, it's not radically slow & wouldn't account for his pain. By way of illustrating contrast, docs described the other study that day of a child who emptied 1% of his stomach during the test.

I'm not sure that under circumstances similar to Lars' I would empty my stomach any faster than 73% of normal. Digestion slows with fight or flight response, doesn't it?

GI:
Thursday night post motility study, the GI attending, Dr. Usedcarsalesprick, came by with his harem to explain why (inpatient) GI was washing their hands of us. "You've had one of the most thorough and beautiful GI workups in the history of mankind..." etc. His demeanor was totally untenable. We didn't even bother to ask questions; I couldn't wait to get him out of our space. Next morning another GI team came (hadn't received extrication message yet) and we asked the lower GI questions. Answer was yes, he clearly has a lower GI motility issue, but no one has ever heard of or seen lower GI causing pain like this. We asked what many people have asked us: what about looking at lower GI, perhaps a colonoscopy? They said he may end up with a colonoscopy, but it would be outpatient. GI will still follow him outpatient.

neuro:
Until Friday night, we had Dr. Betterthanthelastguy as our neuro attending; we actually had him & Drs. Thoughtful & Sneakers here together Friday afternoon. Totally serendipitous, and fruitful. I have written about LP & "normal for Lars" MRI. They're going to try to do an EEG while he's in pain. If not this admission, then next time his pain is predictably episodic. We'll try IV depakote here. Small chance they'll do a nerve conduction test, but as an outpatient if needed. "Not a comfortable test." Everyone says Lars' pain is just not presenting like abdominal migraines.

Once they do all the tests they can think of and don't know what it is, we'll start with medications to treat who-knows-what. Neurontin is the pan-treating, who-knows-what med mentioned most frequently. For seizures, nerve pain, headaches, with fairly benign side effect profile.

All our attending docs switched Saturday because of the weekend. Our new neuro attending, Dr. Thinksdifferently, blew in here rather like a breath of fresh air. Clearly from a different culture, he brightened the room with his energy. Although I didn't like how he pried Lars' eyes open, he's the first neuro doc willing to consider the connection between increasing depakote (depakote = seizure med started 10/19 & increased mid-December) and onset of pain. We told him everyone else had backed quickly away from that question because he's got seizure control with the depakote for the first time. He said, "well no one else has come up with an answer, so I have to think differently. If I don't, I won't come up with an answer, either." Talked about how he's seen serious neuro consequences from depakote use. He said he'd return tomorrow (Sunday).

genetics:
Lars had a full genetics work-up as an infant, but they were pulled back to consult. Dr. Givesmethewillies came & looked at all Lars' body parts as if they were not connected to each other or to a child. They're plugging a few things into the computer. Came back in later & asked if either Lars' donor or I were Amish. No? Ever lived in Pennsylvania?

follow-up on celiac:
Lars was off all gluten for 2 1/2 weeks, including when this latest episode began & ramped up. Combined with negative biopsy for celiac, seems that's not our problem. Hooray for the return of cheerios.

CCS:
(Complex Care Service, formerly known as Coordinated Care Service)
If you've been reading for a while you'll know we placed many hopeful eggs in the CCS basket. They've hatched. For the most part, the CCS docs have been fabulous to work with. Compared with Dr. Grandpa Uninformative & Interrupticus, they've been heavenly.

(By the way I ran into Uninformative in the elevator several days ago. He said, "I heard you were back." I told him Lars was worse than ever, turning blue, purple & gray screaming. He said nothing else during the whole rest of the elevator ride.)

Many specialists can't see forest for their particular tree. CCS are the ecosystem docs. For example, everyone else pooh-poohed our concerns about Lars' nutritional depletion during his pain events, and also while he's in IV fluids in the hospital, but not eating. (The best we had gotten was a shrug & the worst the implication that we didn't understand what his problem was really about.)

The CCS docs had independently had their own concerns about Lars' nutrition, and came to us to talk about it. The g-tube idea emerged separately and simultaneously with CCS, Andey, two friends, and me. Pretty good indicator that we should go down this road. CCS thinking of the whole kiddo.

Harvard medical students do CCS rotations. Dr. Sneakers is back, our resident from Tuesday night. In between we had Dr. Imtoocooltotalktoyou. Not so pleasant. But Sneakers is back & Thoughtful has been replaced by Dr. Kindeyes. We met her briefly in January as she described CCS services. Today we saw her for real & she was so stellar I may have to change her name.

In the absence of other diagnoses, Kindeyes explained, we arrive at "central irritability." When I first heard that term, I thought, "wow, I know quite a few people who would fit under that general description." It's also called "Central Nervous System Irritability / Inconsolability" and "Neural Irritability."

It's a diagnosis of exclusion ("a medical condition whose presence cannot be established with complete confidence from examination or testing; diagnosis is therefore by elimination of other reasonable possibilities"). It happens with folks like Lars whose neurology is severely impaired; the neurons don't connect and communicate with each other like the rest of ours do. The paths are disturbed and the system doesn't respond as anyone would expect it to. I've known that since the day he was born, in my own mama way.

I was curious to read more about it, but wasn't finding much. Kali suggested I try WebMD. I have to say it saved the day. I got these useful links:

Central Nervous System: Compare Prices
Low prices on Central Nervous System products - Trusted merchants sell Central Nervous System products at Bizrate.

Central Nervous System - Bargain Prices
Enjoy savings on Central Nervous System - Deals on Central Nervous System at Shopzilla.

settling down

NG tube in place. Snowed on IV ativan. Meds down tube for the first time ever. Pedialyte via ng-tube overnight. Fever dropping on its own. Sir Larsalot feeling better, wide awake, perhaps settling. Ipod helping us through. No pain since yesterday morning. Andey did his hair earlier this evening.

Life is good here in 711.

Garrison Keillor is now podcasting the News from Lake Wobegone. It goes on my short list of favorite podcasts, along with Wait Wait...Don't Tell Me, This American Life, and Morning Stories. I have a long list of second-tier favorites (Fresh Air, Radio Expeditions, Weekend America, All in the Mind, Driveway Moments, This I Believe, Point of Inquiry, Writer's Almanac, WGBG Forum Network, Voices in the Family, American Radioworks, among others)

spiking a temp

As I wrote earlier, Lars was blah, then very pale while sleeping. Now he woke up & has spiked a temp. Sumthin' going on.

Our conversation with Drs. Betterthanthelastguy, Thoughtful & Sneakers last night about doing an LP (lumbar puncture, spinal tap) today to test for intracranial pressure included talk of using conscious sedation. We agreed to this. Somehow between then and this evening "conscious sedation" turned into "a little ativan" and "a good hold."

Mama Bear says No. Too much pain, too much risk.

Last time they did an LP they put him under general anesthesia because they were afraid under any less than that he'd move. The spinal cord is not the place to miss by a fraction of an inch because the kid moved.

So we have to wait until Tuesday or after for the LP. Big deal, they're not expecting to find anything anyway.

They are going to give him a little ativan and drop the ng tube so we can do a couple days of tube feeds to make sure he tolerates them well. This is in preparation for insertion of a g-tube.

lethargy

Lars is having a lethargic Saturday. Hasn't screamed since yesterday morning, is basically content, no opinions about much of anything, just kind of blah and resting, eating, listening to music.

The back of his hair is totally out of control.
Check out the medusa dreds: Ah, we've just been passed on by Nurse Foundation (aptly named by Kali who wondered how she could still smile with that much foundation on her face).

Larsman did some nice standing today in his AFO's; even got a photo standing with Kali:
Lars' eyes are very watery today. Not red, just watery. He's fallen back asleep with Andey. He's also gotten so pale in his sleep. The color just drained completely out of his face. Andey's been doing sudoku since Lars' first hospitalization. I don't remember if I've written about it. She says she does them because, unlike Lars, she can figure them out. She can work hard and long and then solve them. Little ah-ha moments happen all the time.

feeling better

Lars did some great playing, sitting up in the playroom. And he figured out how to get the velcro IV cover off. Go Larzapan. His work on that dates back probably two admissions, so it's a big coup indeed.

MRI & MRA were yesterday afternoon. MRI looked basically just like his last one ("normal for Lars") & we don't know about the MRA. After a good post-sedation nap, Lars screamed from 11 p.m. to 4:00 a.m. last night. He hadn't had any morphine for 10 hours, and they gave him what they could via IV. What I have suspected for a while was then proven: it doesn't help. At all. So we're now off the round-the-clock morphine, and likewise off the benadryl he was taking to alleviate the itchy morphine side effect.

As has been his pattern, a few days in the hospital including IV fluids, not having to eat so much, and some test requiring general anesthesia or sedation and Lars starts to feel better. Interesting, eh?

We talked with CCS today about the eating question. Perhaps somehow when he needs to take all his food & liquid in via mouth, his system can't handle it. The other two options are a central line and IV nutrition, or a gastrostomy tube (g-tube). I think we'll be doing the initial evals for possible eventual g-tube insertion. There are many ways it could be a really good thing. We could always keep him hydrated & fed, and we wouldn't have to assault him with his oral meds twice daily. We wouldn't have to always spend the current 6-7 hours a day feeding him (this is the majority of his good awake time that could be spent playing & learning), but he could still eat all he wanted to.

Big guy's waking up; gotta go. We adore most of our nurses here, but tonight we have the ^*#@% nurse whom we had on our worst night ever a few weeks ago. Wish us luck.

not honing in

We've seen GI, CCS, genetics, and neuro today & the overall picture remains: no one knows the source of the pain, and no good ideas or leads. A few more tests in the works.

I'll write more soon.

Meanwhile Lars is actually feeling better today.

miserable

Can't really write--using one hand--night was awful & miserable, as were evening & afternoon.

Andey's been gone since yesterday @ 3:30.

serious pain continues

Lars continues to be in serious pain, in cycles about five minutes long. With pain meds on board, he can sometimes relax through the valleys, but the peaks are up in the 6-10 range, on a 1-10 pain scale.

CCS docs following us are great. Dr. Thoughtful is CCS attending; presented this morning as very open, respectful & smart, thinking of Lars from many medical different angles. Asking good questions & listening to answers. So far he has our seal of approval.

Other good news: attending in neurology until Friday is Lars' epileptologist Dr. Betterthanthelastguy, who knows him well, is attached & invested in helping him, understands his baseline, and is also a good doc who knows how to work with us as full members of Lars' team.

Lars has been on IV fluids all night & is finally re-hydrated. Real tears are back. Currently prepping for a motility study. Not exactly sure what that will involve, but examining how food moves food through his stomach, small intestine & large intestine. Scheduling brain MRI and MRA, also looking at possibile metabolic concerns. Betterthanthelastguy said the question of depakote seemed unlikely because his episodic pain is unrelated to when he takes depakote, and because we would expect to have seen more gastritis and/or ulcer.

It's been wonderful to have us both here, taking turns. It's too much for one mom.

711 again

We're back in room 711. I like coming back to the same room on the same floor. So far we've been familiar with all the nurses & CA's we've seen tonight. Good folk.

Lars is sleeping now (yeah) and we're settling in. They put a catheter in down in the ER to get some sterile urine for a test. I happened to have my guitar out so I made up a song about "hey, that's my favorite toy; who said you could play with my toy? my moms told me it was all mine & I didn't have to share it" - the nurse was laughing so hard Andey told me to stop so she could put the catheter in. It was pretty fun.

When we left to come up to our room, Andey heard our nurse say to someone, "I can't believe they're leaving." I guess we'd been entertaining her for quite some time with guitar & singing through all the procedures. She was great.

So this is our first admission under CCS & we just got our first visit from Dr. Sneakers. Sweet kid. About 20, horn-rimmed glasses, converse high-tops, 5 o'clock shadow, white T-shirt & wool pants from salvation army. Easy to talk with. All the nurses in the ER raved about the CCS docs & how wonderful they all are.

Waiting on meds now.

Andey & I both worked on a place for Joa to go tonight, without communicating with each other. Oops. So he had two different offers. Talked with Joa around bedtime & he was doing okay. A little teary. Expressed clearly that he just really wanted to be at home. We promised him that after tonight one of us would be at home with him, if at all possible, and that we'd take turns like we usually do when Lars is in the hospital. He's turning 8 1/2 a week from tomorrow.

Got the dog covered thanks to Tamara & Sarah. More delicious bakery goodies arrived from Kathleen. Many, many thanks.

Will update in the morning. G'night.