home, Monday

Sooooo happy to all four be home together. Amazing.

Still searching very actively for someone to watch Lars Monday morning 8:00 - 11:30... if we can find someone, then we can both go to his big IEP meeting. Any leads, let us know.

Thank you everyone!

great evening, good night, great morning = GOING HOME

I just signed discharge papers.

We're going home.

Nice place, but no plans to return soon.

hopefully home Saturday

Since Lars had such a bad night last night, they want to keep him another night.

He's been able to nap a little, but now is awake & upset. Andey & Joa & Denise arrived a bit ago.

Dr. Betterthanthelastguy came through & pooh-pooh'd Cyclone's ideas about waiting to start neurontin for a month, and about spasticity being the cause of pain. He's going to do something smart: send an email to all the docs who might care & ask them to okay starting neurontin in the next couple days. He says then give it 2 months for a good trial.

save the date: upcoming birthday party

Lars Is Turning THREE
We'd love to have you come celebrate with us

Sunday, March 11th
2:00 - 6:00 open-house style
cake & candles at 4:00
28 Ash Street
Marlborough

rsvp if you can come
lisa at kynvi dot com
or
five zero eight, three zero three, zero five four five

cyclone

Dr. Cyclone blew through. Put my mind to rest regarding encephalopathy as a result of depakote/valproic acid. Apparently it would usually set in over the course of days, not months, & would represent a much quicker degeneration than we've seen.

Waiting to start Lars on neurontin until CP (cerebral palsy) docs can see him about his relatively dramatic increase in spasticity & klonus (legs, ankles, & feet). Outpatient CP appointment is in a month, but trying to get him seen in-patient. Cyclone thinks CP may want to start a med that doesn't mix well with neurontin.

Holding off on eeg because want to see it during a neural pain episode & we're not having any.

Not sure if we get to go home today because of his tough night. Decision's been postponed until afternoon.

Takes 6 months for g-tube site to heal & form a track. Then it's an outpatient procedure to exchange it for a mickey button, which will be much less obnoxious. Until August we have a lot of tubing & need to wear loose clothes because the tube wants to be sticking in as straight as possible.

mmmm hard night

All night, sleeping for very brief periods, then startling awake--with or without external sound--& crying, crying, crying. Small fever in the middle, now back down. Not sure what's going on. Some seems like pain, but not all.

Morphine helps with this kind of pain--unlike the neural pain, which it doesn't touch--but I wonder if it also causes other distress. When he woke he seemed scared & distressed, almost psychotic-ish.

Earlier yesterday evening Larzylou had severe pain while dealing with post-stomach-surgery-gas (I've never heard anything like that before) and then with moving his bowels. Ouch.

Our little roommate pulled his j-tube all the way out early this morning. Lots of commotion there.

Yesterday when Lars was feeling good, the full-time in-patient communication enhancement person came by & brought him a CD player & small fan hooked up to a powerlink & a switch. We set them so when he pushes the button, they come on for 30 seconds, then shut off until he pushes the button again. He loves that.

home tomorrow?

Too good to be true?? If all continues to go well, we may go home tomorrow afternoon or evening. What a fabulous thought. Today is our 30th day in the hospital during 2007.

Rough Lars night. Waking frequently & much difficulty settling back down. Wants Mama close & holding hands, whispering sweet reassuring words. I'm struggling to settle, too, because evening nurse was at best sloppy, at worst incompetent. Tried to flush IV line with a syringe full of air. So glad I saw those bubbles running through the tube before they got into his vein.

Denise was here all evening with me- just left a few minutes ago. Lisa was here this morning & afternoon. Long phone call with CBT. Mmmm those friends keep me going.

I'm going to try to sleep. I'm sure I have many more wake-ups tonight.

briefly on half-birthday, post-surgery

Joa's still awake. I taught him a D major chord and a little riff on his Little Martin guitar & he can't get enough. He's so amazing and sweet.

Joa's half birthday party was fabulous. The child life gal left the playroom unlocked for us to have our party in, so we had pizzas, soda, and half-cake and played air hockey, listened to music, and talked. Larsman came reclined in his stroller, Denise & Kali surrounded him with the Geddes aura of contentment, which worked wonders.

Joa had a great time with Michael, Thomas & Jean today at the museum of science, and it continued through the party. Erika made a delicious half-cake, and brought it along with plates, plasticware, a half birthday card in a half envelope, 8 1/2 candles, and a whole present :-). Erika & Molly hung out for the party, which was great fun.

Joa ended up with a cool moving fish light, pokemon cards, worst-case scenario card game, guitar strap, and tuner as well as his guitar. He was quite surprised & entirely grateful & happy. Mama's teary moment came when he went around and gave everyone a hug and thanked them "just for being here."

Lars is feeling pretty sore, I think. Took some time to get pain meds ordered; he was very sad when I left. Kathleen is gracously taking Joa in the morning & then he has a playdate with his friend Andrew in the afternoon. I'm going to go help Andey, who will have had a long night, no doubt, and meet Lisa M. at the hospital to craft Lars' IEP.

More to say, but have to put 8 1/2 year old boy and 41 year old self in bed now.

here he is

Sweet & peaceful, sleeping anesthesia off. Vitals all good. NG tube was removed. Post-op is the noisiest place in the hospital, I think. Such an odd smell.

They say we'll go up to our room around 5:00. Joa, Jean, Thomas & Michael will be back around 6:00. Andey arranged for pizzas through the hospital cafeteria. Erika's making & bringing the half-cake. Denise & Kali are coming to celebrate, too.

Lars doesn't get to eat or drink for another 24 hours; it's already been 17 hours.

We probably should have asked our surgeons if they play video games. A new study found that surgeons & surgical residents with a history of playing video games for 3 hours or more per week performed significantly better on a standard surgical skills test than their nonplaying colleagues. From 60-second science podcast- Check it out.

the anesthesiologist

Dr. FirstlyThereIsNoEvidenceOfComplicationsOrInteractionsBetweenTheseAgentsAndNeitherINorAnyPhysicianInTheFinestInstitutionsKnowsOfAnyStudiesShowingAdverseOrBeneficialEffectsFromTheAnesthesia just came by. Amazing. He's like a scripted audio encyclopedia track.

Interesting guy. Beautiful eyes & extremely kind man.

Andey suggested we call him EverythingWentFine, but he would never say that in such a straight forward way. He launched into a description of Lars' airway & talked about how there were no complications resulting from the structure of his airway. Both of us expected him to tell us about some difficulty caused by something other than the structure.

Before surgery he explained the exact sequence of procedures he would go through if Lars started to show signs of an allergic reaction to anesthesia.

He does all this in a manner and tone that are not condescending or superior, but very warm & conversational. If I just listen to the tone & not the words, I forget he's reciting his script.

Hopefully we get to go see Larsy soon.

all went smoothly

Doc just came out & said everything went smoothly & Lars did great. We can go back to see him in about 20 minutes.

Go Larzapan.

Lars is in the O.R.

Procedures got underway a couple hours late. He's under anesthesia now. They're doing LP first, then g-tube insertion.

I guess he won't have a mic-key or a corpak button externally at first, but rather just a tube that can be clamped. He can come back in & get it switched for a button in time, if that's what we want.

Thanks for keeping up with us. It helps. It really does.

mornin'

Happy start to our morning- that's Lars' favorite CA with him- then lots of crying. Only IV fluids because of surgery today, so Captain Breakfast is hungry & grumpy. Hopefully this will be the last npo morning for a long time.

Piggybacking LP with general anesthesia today; scheduled to start at noon.

all quiet on the 7 west front

Well, our side of the curtain is quiet, at least.

Lars had a better evening than morning & afternoon. He's carrying a deep sadness which he expresses often when he wakes; the last few days have been especially tinged by it.

I was teaching through dinner, but Lars was able to eat some. I got a shower, thanks to Kali. Have been aware that this is our last night with a Larsbelly sans plastic button sticking out, at least for a while.

Thinking about Lars & his tactile explorations, Denise & I brainstormed a way to alter his shirts so they'll snap at the crotch, since he's outgrown all the commercial onesies. Our idea is strips of stretchy cotton fabric that snap onto the fronts & backs of his shirts. What we didn't get to was how to make a trap door for the tube to go in during feeds?

I've been realizing that Lars' next IEP meeting is Monday & we might still be here. Lots to do for that meeting, teaching again all day Sunday, so Lisa M. & I are going to work on the IEP this Thursday. I will post it somewhere on-line for you who know IEPs to offer your feedback. Virtual pre-IEP meeting? The draft the school came up with...shall I just say really needs help. If anyone happens to have Monday morning open, we'd love to both be at the meeting, but that would require someone to be with Lars, either here or at home.

Last night after we arrived home, Joa said, "I feel like I just lost life. I lost normal and I'm not going to get it back again until Lars isn't sick, and my friends start playing on club penguin again, and I get some more sleep. It feels like my life is just gone. Like somebody bought it & I can't get it back. I don't know how to explain it."

Wow.

Today Joa had a wonderful time at his sibshop--thanks to Denise for spending her day getting him up to Beverly for it, and then here to the hospital. Heartwarming story of the the day: Sibshop kids made "bugs" out of paper plates. One side was for writing all the things their sibling does that bug them. The other side was the lovebug side, where they wrote what they loved about their sibling. Joa reported to Denise that his bug only has words on the lovebug side because "there's nothing that Lars does that's under his control that bugs me." Such an amazing boy he is.

A wise old friend back in Portland wrote, "Thinking about Lars... and Joa's fascination with violence I am reminded how often these days I rage at a God I don't believe in, and have the violent desire to knock him off his throne and make a few changes in the way this world's working. I wonder about the frustration and rage Joa must feel about what's happening with Lars; and whether the song and computer game provide an outlet for him to express some of that and feel powerful and in control. Sort of a more primitive, less evolved version of doing sudoku." Indeed.

Joa's 8 1/2 birthday is tomorrow & we're having a party around 6:00, if anyone is free. In the 7 West playroom, featuring pizza & half a cake. Before that he gets to go with Andey's cousin Jean & her two sons to the science museum. Hopefully it'll be a good day for him. We're trying to make it special. If you promise not to spill the beans, I'll tell you that we got him a baby Martin acoustic-electric guitar. Sweet.

Odd how I've come to sleep better in the hospital. When I'm here, all my attention is here & that feels congruous. When I'm not here, I'm drawn in many directions & feel conflicted with the weight of the deluge. Being away for a short while is thorny because I'm reminded of the thousand life details I ought to be concerned with, but without time to think of them all, let alone do anything about them, my mind just gyrates out of control.

Now, however, I can barely stay awake. Big day tomorrow. Hmm, night nurse just woke him doing vitals. Sigh.

upper GI today, g-tube tomorrow

Lars is trying to nap now, but loud roommates are not conducive to such an activity. Sweet folks, just loud.

Today is upper GI study with barium; swallows barium then they watch via x-ray as it travels the esophagus, stomach, and upper intestine. Gives information about his anatomy.

Lars is scheduled for surgical g-tube insertion tomorrow at noon, under general anesthesia. From their description & wikipedia: Endoscope with a powerful light at the end goes down through the mouth & into the stomach so they can see in from the outside. Insert a needle through the abdomen & pass a suture through the needle. Suture grabbed by the endoscope & pulled up through the esophagus. Suture is tied to the end PEG tube that will be external, & pulled back down through the esophagus, stomach, & out through abdominal wall. Insertion takes about 20 minutes. After insertion, the abdominal wound is covered until it's healed (about a week). The tube is kept within the stomach by a balloon on its tip (which can be deflated to remove the tube).

Apparently I missed the hospital last night. Very tough time sleeping at home, mind spinning fast. Thinking of a million things, including Thinksdifferently saying he's seen depakote cause encephalopathy. Why did he cyclone in here, say he thinks differently, mention depakote and encephalopathy, announce he'd be back the next day, & then disappear? I'm going to downgrade him from Thinksdifferently to Cyclone.

Lots of talking with Joa last night. Will write more later.

Sunday, Monday

A couple of mostly pretty good days, although this morning was rough for an hour & a half, and we're now in the middle of another bad spell. Seems like pain.

Yesterday & today he's been remarkably shaky with lots of tremors: hands, arms, legs, head, whole body. Docs are saying we should try valium for tremors. Also increased ankle clonus the past couple days. Got both legs going, seemingly on purpose, the other day. Seems he was getting a kick out of the jiggling. AFO's went on & stopped the clonus.

IV got removed last night (yeehaw), so Denise & I gave Larsy a bath this morning. He loved it & the tremors stopped for a while. Denise & Carylbeth have been huge helps this weekend; would have been much worse without them. So many thanks. Coffee in the morning, jägermeister & chocolate at bedtime. I am well loved & cared for, indeed. Joa & Andey stopped by for an hour & a half yesterday; Andey needed to sleep much of the day because of work.
I've been here with Lars since Friday morning. Andey's done with work weekend now so I'll go home tonight to be with Joa. Joa has a sibshop. tomorrow in Beverly, which Denise is taking him to so both Andey & I can be here for Lars' tests & to talk with docs.

They're probably doing the LP tomorrow, and we should be getting word about when g-tube surgery will be scheduled. We have no idea if that can be done this week, or if the O.R. is scheduling several weeks out.

I'm familiar with g-tubes from working with special needs kids who have them. Several of you have asked, though, so I found a dad's web page with pictures of his guy's g-tube, if you want to check it out, it's here. Lars has had an ng tube (up nose, down to tummy) for the past couple days. He's received most meds through it, and did continuous slow feeds for 18 hours yesterday & last night, to see if he could tolerate that. Today they're trying a couple bolus feeds (5 oz. at a time) to be sure he does well with those.

What an amazing thing, not to have to fight to shove syringes full of yucky tasting medicine into Lars' mouth twice a day. Not to worry if he doesn't drink enough. Just bypass the mouth. And he can still eat all he wants.

I've officially re-named Dr. Kindeyes. She shall heretofore be known as Dr. Kind&Competent. She has been absolutely amazing. Denise had a good descriptor for her: "there's just no party line." She's a dream doctor, in my book.

Kind&Competent is trying to get Thinksdifferently to start Lars on neurontin pre-LP, since it'll take a month to creep slowly up to therapeutic doses. Andey found an interesting study on neurontin (gabapentin) with kids like Lars. Here's a link for it. The study hypothesizes that "visceral hyperalgesia" is a source of chronic unexplained irritability and pain in kids with severe neurological impairment like Lars.

"'Visceral hyperalgesia' is a pain state caused by central sensitisation, that leads to abnormal perception of both painful stimuli...and non-painful stimuli..." (reference here). In the study they treated with neurontin & the kids felt better. Worth a shot, especially with a benign side effect profile.

We've had Nurse Biznis most of the weekend, who is competent enough, but Swell Nurse just came in & that means we get her from now until 11:00 & that's just, well, swell. She's one of our top three favorites, along with Power Nurse & Nurse Gurlfriend.

Did I tell you about Nurse Gurlfriend? We had her several weeknights in a row. So smart & sweet, 20-sumthin', she says to me one night, "You know, Lars asked me to be his girlfriend." "He did?" says I. "What did you say?" "I said yes."

By the way, I won't gross you all out with gorey details, but if anyone wants to know what havoc nuclear/radioactive scrambled eggs wreak as they exit an almost-three-year-old's system, just ask. The one with the most stories in the end wins.

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:

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