6:30 p.m. Monday

We're in a holding pattern here, basically. Trying to get Lars to eat a little, observing him while he's very upset, trying new & more aggressive reflux and constipation medications & doing more observation. They are basically saying he's not going home any time soon, that they want to figure out what this is & have him in here until he can eat, digest & eliminate without major pain. Sounds good to me.

My latest thought--from a question from a friend--is whether he might have developed food allergies. No one has mentioned it, but we are going to request testing, insofar as they test for such things here. So please, keep the creative questions and ideas coming. We need to think from all different angles on this- the more brains, the merrier.

Denise brought Joa here from Sudbury Valley this afternoon so I didn't have to leave, which was greatly appreciated. Andey's here rocking Larsy while Denise buys Joa his requested pizza & rice krispies at the cafeteria. Andey & Joa will go home soon- CarylBeth's coming to hang out with us a bit tonight. Andey's cousin Jean, who works at the Brigham, was here for a while this afternoon & got Andey over to the coop & involved in a three-brand taste-test of dark chocolate.


Ah, Joa came back- with his second piece of pizza.



Lars is feeling really sad. Not even a nice walk down to the lobby to listen to the wonderful contraption did the trick. We just found out that we're in the only four-bed room in the whole hospital. And it's full. Lucky us. I brought ear plugs, so perhaps it'll work to sleep in the bed with Lars & feel him when he wakes.

naptime on 8 west

we're on 8 west

We got to our room--811D--at about 3 a.m. They ruled out pancreatitis last night & so they think that all the big scary things that it could be are ruled out. That would be even more of a beautiful thing if we knew what the heck was going on !! They're going to keep him through today & tomorrow & observe him. They took him off his IV drip & we are trying to feed him so that he can show them what he feels like as food is moving through his system, which is basically like...um, how to say it delicately...like he's in a vice grip. His painful cries when he's trying to digest are remarkable in their intensity and violence, and basically look just like they did when he was totally impacted with what they're calling "very old" stool (...how old they can't tell us...I guess they don't have any archaeologists on staff...).

When he's not digesting, he's very crabby & grumpy most of the time, with moments of okay-ish. He wants 24 hour snuggles & by gosh that's what he'll get if that's what he wants. They tried many times on the IV last night & kept blowing veins. It ended up on the top of his left (currently primary) hand, so he can't do his regular exploring, etc., which frustrates him.

They have no answers yet. Why did this happen in the first place? Could the bowel & pain be a symptom of something else, rather than the root of the problem? The morning doc said it "had to be" either reflux or constipation. It has to be?? Really?? I don't know.

Andey's going to stay the afternoon while I go get Joa & bring him here to see us for the evening, then she's going to go home for the night & I'll stay here. Visitors welcome any time. We're in a big room with four beds this time, having given up our lovely private room yesterday. Oh, well.

I'll get a new photo for you soon!

Thanks for checking in- We certainly have a remarkably wonderful circle of friends & I am deeply grateful for each one of you. Keep the candles burning & the good thoughts flowing.

Back in the ER

We're unfortunately back in the ER tonight, Sunday 1-7-07. They sent us home from 9 South this afternoon after Lars had a clear x-ray, and was eating and perked up significantly. Around the time when we got home, 6 p.m. or so, he started violently screaming & writhing in pain. We were unable to get him to stop, and we brought him back to the ER. They've done a full ultrasound so far, and didn't find anything remarkable. They are doing bloodwork now, and re-admitting him tonight. There's a chance that his recent additional seizure med, depakote, has caused pancreatitis, and they're checking that. Sounds like we're going to 8 West this time...

If you're just catching up with us, we were here Wednesday night, back Friday night, admitted Fri-Sunday, and now back Sunday night... Here are earlier pics & updates:
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Saturday:
Lars had been feeling worse & worse. We took him to the ER Wednesday night. He turned out to have a very impacted bowel even though he'd been moving it. Three enemas later we thought he was all cleaned out but then he was in acute pain, writhing & screaming inconsolably for hours & hours again Thursday, so went back for more x-rays. He still had a huge mass of stool that had only moved a little ways, still in the upper large intestine. He hadn't eaten much since Tuesday & was really miserable.

After several more enemas, Friday we went back to the ER & he was admitted to Children's Hospital. The x-rays looked much like those on Wednesday night had, in spite of lots of enemas, exlax, mirilax, etc. They put an IV in & an NG tube up his nose & into his belly. Last night and today they've given him 1600 cc's of "go lightly," and two more enemas, but no results. They're going to keep doing enemas every two hours all night. Official party line is still that it's old stool just being stubborn, and they are going to do their "clean out" regimine until tomorrow morning. If there's no movement by tomorrow morning, then we go to plan "B." I'm not sure what that is. At this point we're really hoping it's just poop in there, not some other growth, & that it's NOT attached/calcified to the intestine wall. Haven't done any more x-rays. He's had 6 in the last 3 days- one of the nurses said "we don't want him to glow"....

Joa has been hanging out with friends & went to a great sibshop today (http://www.siblingsupport.org/) Andey's working tonight & I'm here with Lars. Let's hear it for laptop and wireless internet!

AND for the camera in the laptop!








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Sunday:
Okay, thanks to all of your images of waterfalls, mudslides, volcanoes, waters eroding hillsides, dams breaking, levees breaking, irrigation, embankments eroding....... and Mama singing Cris Williamson's Waterfall over & over.......and with a little help from go lightly and enemas every two hours...... we early this afternoon we achieved a clear Lars intestine!!!!!!!!!!!!!!!!!

Whew.

He felt immediately much, much better-- perked right up, started eating (in spite of the tube running down the back of his throat), making happy sounds (that we haven't heard in days), smiling (which we haven't seen in days), and his color improved before my very eyes.

Napping a little now, waiting for tubes to be extracted & for the GI docs to come visit, then they'll spring us out of the hospital later this afternoon or early evening. Fresh air, here we come!

YAHOO!!!!!!!!!!!!!!!!!!

breakfast

Michael's Run

Lars, Joa & I participated in Michael's Run, a benefit run for the Michael Carter Lisnow respite center in Hopkinton that Lars attends. It was great fun. And, as a bonus, remember the wonderful man who took Lars rollerblading? Well, he and his daughter Julia (middle photo) showed up to see Lars off at the race; they live in Hopkinton!

Here are some photos from the day. Joa made the whole 5K walk! Lars did too, sleeping in his stroller.

Lars & Mama's day with Elmo

So I got to make music with Elmo, Cookie Monster, "Jenny the Music Teacher," 35 preschoolers, 50 elders, 9 music therapy interns & numerous others yesterday morning! This is from the press release:
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"E" is for Everyone!!
Great Photo Opportunity Tomorrow!

WHAT: Everyone can make music, even when you don't have an instrument! Please join us tomorrow at the Notre Dame Long Term Care Center for an Intergenerational Music Therapy Session involving residents of Notre Dame, students from the Guild of St. Agnes Granite Street Preschool, and some very special friends from Sesame Street Live. Music therapists Lisa Kynvi and Chie Furukawa and their Anna Maria College music therapy student-assistants will use expressive songs and instruments to bridge the gap between the youngest and oldest generations of our community with a little help from Elmo, Cookie Monster and Jenny of Sesame Street Live!
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We had lots of fun--so much so that I decided I had to take Lars to Sesame Street Live at the DCU Center last night. We were at the 7:00 show, and he loved it! Lars was most excited when Elmo was on stage (he knows & loves Elmo's voice the best). It was very sweet to watch him listen to about the first half of each new song, and then join in with "da da da" or some nice gargle sounds for the rest of the song--always in the key they were singing in! Lars was so excited, in fact, that he didn't settle down and go to sleep until way after midnight, and then was awake every 15-20 minutes all night, even though he wasn't having visible seizure activity.

Lars goes rollerblading

Joa & Gannon were invited to a friend's birthday party yesterday at Roller Kingdom & by a couple of flukes--Andey sleeping, Joa feeling sensitive--Lars & I ended up being there. Last time he was there, Lars was very upset & cried the whole time, but this time he loved it. We were having a grand time & I was watching a dad-aged gentleman who was by far the best & most graceful skater on the rink. I wished out loud in front of Tamara that Lars could feel what it's like to glide around the rink with him, and she promptly said, "I'm going to ask him if he'll do it." After clearing it with management, he gladly accepted and held Lars while doing about ten laps around. Lars LOVED it, as you can imagine. The beautiful skater gentleman's daughters subsequently fell in love with Lars & essentially played with him the rest of our time there.... I kept humming one of Lars' theme songs that pops into my head with regularity: "That is why all the girls in town follow you all around. Just like me, they long to be close to you."

lunch date

Lars & his buddy Tamara