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.

waiting in the ER

We're still in the ER waiting for a room. Word has it we're going back to 7 west. They've done a belly x-ray & now are placing another IV. Blew the first IV trying to draw some of the six tubes of blood they need for labs. He's too dehydrated to give that much blood. The nurses & doc here have been great.

escalating, back to the hospital

This is probably the worst 32-hour (and counting) stretch we've had. Lars' pain is escalating significantly, and Andey's now given him all the morphine we have. We're not even sure if it's helping. Andey spent some time on the phone with different pharmacies (she knows them all from tracking down hospice meds for patients) to see who stocks liquid morphine in a good concentration, but then it turned out that his primary CCS guy, Dr. Freshface, and his pediatrician, Dr. Richie Cunningham, aren't comfortable with us keeping him home in this amount of pain, giving him morphine & valium that we're not even sure are helping.

That's actually good, because at this point I'm not comfortable with it, either. It's gotten so bad that neither of us can physically hold him through his screaming & arching. Our bodies & spirits are trashed, and he is suffering so. He can't sleep, eat, or drink.

Andey's just left with the boys. She's going to take Joa to school & Lars to his outpatient GI appointment--we weren't about to miss another shot at our first outpatient GI appointment. The inpatient GI docs are so procedure-oriented that they barely look at the boy: just the test results, ma'am.

Andey will then take Lars to be admitted. Freshface & Richie Cunningham think we can get Children's to schedule the brain MRI in the next few days. We're on the list for April, but maybe if we're inpatient they can move it up. Perhaps the outpatient GI NP they see this afternoon will think of something else to do, like a motility work up. Alice's (Lars' amazing PT & cranial sacral therapist since June '04) sense is that it's small intestine-related & she certainly has more information about him over the long-term than any docs.

We also haven't ever tested the depakote-coating-dissolving-early theory by giving the depakote via IV instead of sprinkles. Perhaps this is the time to ask again about that.

I'm going to go teach my class & then go to the hospital. We're hoping to get a hold of a friend who can take Joa overnight, and we're looking for someone who could take Abby the dog in for the night in case this big snow storm materializes & no one can get here to feed her or let her out. If you could do this, please let us know. I should say Abbykyns is not accustomed to cats. She thinks of them as cute, interactive playthings because the cat she lived with for a few days when she was a puppy was unfortunately declawed. It's about time for her to learn her place vis-à-vis cats, so that's not a problem. But if you don't want to enlist your cat as Abby's teacher, that's certainly understandable.

I'm going to spell out my phone number so internet engine crawlers or whatever they're called looking for phone numbers & emails won't recognize it: five zero eight, three nine five, eight seven one two. Email is lisa at kynvi dot com.

Lars was in the hospital for 21 days in January. So February can't actually be that bad because there are only 15 days left of February.

Thanks for reading. As soon as we know where we'll be, I'll try to post it.

slip slidin'

After several days during which Lars only a bad hour or two, we had started to feel optimistic. Today, however, has been awful start to finish. Actually last night was awful, too.

Over the course of today & tonight, we've given Lars a total of 15 1/2 mg of morphine & some vallium, and still he's spent most of his time crying, has eaten hardly anything, and drank even less. Many times he screamed so hard he turned shades of blue & purple. He's exhausted, but can't sleep long before he wakes up, arches his back, & screams. He's in terrible pain.

A friend wrote, "Being a mother calls you to trial time and time again. Why is it that raising children can be so wonderful and yet completely gut wrenching at the same time? Is this what makes it so wonderful and mesmerizing?"

We are indeed called to trial. It's now 3:21 & I haven't been to bed yet, trying to prepare for teaching, Lars is screaming in pain in spite of more morphine. So many questions about what it means that we had several okay days with only an hour or two of pain, and today it's been almost constant. Why? What changed?

We're going to Lars' first outpatient GI appointment tomorrow. Or I guess it's today. Tuesday. We're optimistic about seeing a nurse practitioner whose specialty is in the area of "Motility & Functional Gastrointestinal Disorders." This could be right up our alley, indeed. I unfortunately will again be working, but Andey has a long list of questions to bring in.

The weekend was wild. Lars & I made a kamikaze trip up to Montpelier, Vermont to attend our dear friend Cary's 40th birthday party. We ended up checking in to a hotel for an hour on the way up to take a bath.

Random time to bathe, you muse?

While we were driving, Lars opened his eyes from a nap and threw up all over himself & everything in the near vacinity. Head to toe. The hotel was warm & clean & private & had lots of towels and a lovely bath. Lars thought it was hysterically funny to take a bath in the middle of his car ride.

Turns out Andey bought some cute "Rhino Acidophilus" when Lars was in the hospital. We'd given him some then, but he had thrown up shortly after. We recently discussed trying it again, and decided that when we did try it again, it ought to be during the day time.

Saturday morning before our trip was when Andey decided to try it. We now know for sure that there's something in there that doesn't agree with Lars' belly.

At least it wasn't another round of the stomach flu. We made it to Cary's party & it was lovely. The fact that we got back at like 1:30 in the morning & I had to teach an intensive the next day didn't detract from the party. Although it may have detracted from the class.

Monica & Kathleen helped care for Larsy & Joa on Sunday while I taught & Andey slept (she was between two worknights). So many, many thanks to you both. And also for the black bean soup. Yum.

Joa got a valentine's box in the mail from Texas this week. He was so tickled by that, especially since it came from Monica's mom, whom he's never even met. The cute dinosaurs were a welcome contrast to his obsessions of the week, which include the Black Sabbath song "Iron Man" and a friend's computer game called "Dawn of War." Andey & I struggle with the violence he's so attracted to, even though his deeds are generally non-violent. He feels, and hears about, our discomfort and tells me how he's "ashamed" that he is so drawn to violent games. It's difficult to sort out our responses.

Today...yesterday...was our anniversary. Dear Lisa & John not only took care of the boys for us, including very unhappy Lars, but also treated us to dinner at a wonderful Indian restaurant in their hometown of Maynard. Imagine, a whole dinner out with just us. No interruptions. We ate like queens & had a wonderful talk. We're both amazed & delighted about how well we're doing together through this stress. It's been 14 years as a couple, 12 years since our first wedding, 6 years since our second wedding (Vermont civil union), and 2 1/2 years since the 3rd, legal wedding. Going strong.