re-grouping

Lars really is better. Such a blessing. The combination of prilosec and senna, in addition to his previous medications, seems to be doing the trick. Thank goodness. His sleep is as messed up as normal, but that's not related to GI issues. We'll continue to take turns being Night Mom so neither of us gets too burned out.

We're slowly trying to pull ourselves back together. Both Andey & I had the experience yesterday & today of just feeling fried & stupid & inept. It's hard to call it anything else. Seems like a combination of exhaustion and delayed stress response.

Joa has decided that he & I should sit on the couch each night to have tea & talk about life. We were in the middle of our chat last night when I got so tired that I don't even remember going to bed. I pulled out all the stoppers for my intergenerational group this morning & now I feel achy & hoarse & stupid again. Sigh.

I'm going to rally my little self, though, and take Lars swimming at Fernald this afternoon. The warm water will do us both good. Then it's to Framingham to pick up Joa & Toys R Us to buy a present for the birthday party Joa goes to tomorrow. This house needs hours of cleaning & straightening, the Mechanic Street house needs days or weeks so we can get it on the market, my syllabi for this semester need writing, the bills need paying, my guitar strings need changing, food shopping needs to be done... Plenty to do this weekend.

Someone yesterday said, "This must have been hell for you." Naw. Hell would be if we were dealing with this while living in a war-torn country, or somewhere under seige, or somewhere with drought or famine, or somewhere without good hospitals and reliable medications, or somewhere where the medical system didn't speak our language or understand our culture. That would have been hell. This was just a drag.

Lars took a long time to get going on his lunch, but now he's doing great. He says, "dai dai dai" and that he can only eat soy yogurt, grahm crackers, and hummus today. Alright, then.

Thanks again for all your thoughts & prayers & good wishes. Hugs to you all-

the night, dream follow-up

Larsy was so happy to be home! He slept on the way, then woke up as soon as they pulled in the driveway. We had a lovely few minutes with all of us in the living room together. Joa was exhausted, but really soaking that up. He's a Whole Family kind of guy. The little Lars grin when he fully realized he was home, no IV in his hand, was precious.

Lars then had trouble going back to sleep, fussy & whiny. Did he miss all the random noises of the hospital? Andey was the offical LarsMom last night, so I can't give all the details, but from what I heard he spent a fair amount of time awake, but not upset.

I love my job, but wow was it difficult to drag myself out of bed this morning. Coffee.

I told you a couple nights ago how a friend was going to incubate a dream for her & Lars. Here's the stunningly beautiful result:

"Dream: Lars and I moved through thick cloud cover, holding hands. Then clear cold air hitting our faces, moving so fast, laughing. It felt like dancing. Enormous space. That's the best I can put this one into words."

And indeed, it came to pass.

it's official

Joa & I are home, and Andey has phoned from the road. 9:45 they got out. So glad to be home; can't wait for them to arrive. Lars gets to see Suzie, Meredith, Sue & Alice all tomorrow. Lucky guy!

spring, sprang, sprung!

Hey, that movement really moved him! Lars totally turned a major corner & is feeling MUCH better. His whole demeanor changed & he's back to his happy, relational, bouncing baby boy self. It's stunning to have witnessed this major transformation in the course of an afternoon. They said the prilosec would take 48 hours to kick in, and he got it Monday at 4:00 for the first time. So when does he feel better? Wednesday at 4:00. Wow.

He also got his senna for the first time this morning.

He's actually been up and standing in his afo's, taking some assisted steps, playing & exploring, even giggling a little. 100% different from the last two weeks. He's currently eating, again, and is on his second chicken finger with gravy. What a boy. (Ask him some time about the bite of squash Mommy snuck in there; nearly ruined the whole meal. Wow, was he mad.)

Wonderful visit today with Kathleen, who fed the moms like queens (who gets fabulous strawberries, blueberries, raspberries, & mulberries in January?) & played with Larsman.

And Andey's cousin Jean came.

She was extra helpful with getting Lars' urine sample, having been a post-partum nurse for a couple decades. They're running that & blood & stool tests; we'll get the results over the next week or so.

Denise fabulously brought Joa again & got to see Lars in way better spirits than yesterday. She & Joa just got back from their usual rounds around the hospital, in which he talks her into buying him pizza & ice cream, playing video games & making up whatever game he's thinking about. She & Kali are the best godmothers for Joa!

And of course Joa had fun with the laptop camera-


Ah, Lars is now finishing Joa's chicken fingers, too, and starting in on his IV tube :-) In spite of our best efforts, yesterday he chewed all the way through the IV tube on his hand, & when they flushed it, it squirted out all over.

Several of you were concerned about my tired photo from last night, so here's one to proove I'm better:


Now we're just waiting for the orders to come down from above & all the discharge stuff. Our nurse said at 4:00 that it would take 2 hours. I laughed & said if we were out by 9:00 I would be surprised. She insisted not, but here it is 7:14 & we've heard nothing more.

Lars is totally back to himself. He's still eating, no belly pain, just a happy little chowhound. Since I'll now be going to work in the morning, I think I'll pack us up & get all the stuff out of here & take Joa home to bed while Andey waits for the paperwork. So great, just so great!

up n down

Slept 'til 12:30, screamed 12:30 - 1:45, tylenol at 1:00. Lily & Abigail & Wendy visited

That was sweet! Lars was screaming at the time, but they understood, I think.

By 2:00 he was eating, a little fussy in the middle, in & out of the high chair, but still eating now.

Eating much better now. The attending GI doc came in today & talked with us about how this may not be abdominal pain at all; frequently they see neurologically involved kids with CP like Lars has who start having these events that look like pain, and get a GI work-up, but they end up somehow being neurologically caused. This is the kind of information we get from the older, more experienced supervisor docs & indeed we are ever so grateful for them.

Flash update: we have our first movement since being cleaned out! Yahoo!

finally, a GI consult

Well, miracle of miracles, a GI fellow finally stopped by about a half an hour ago. He was able to answer some questions & explain the relationship between hypotonia (low tone, which Lars has), reflux & constipation. The new, more aggressive reflux med that they put him on takes like 48 hours to kick in & they started it Monday late afternoon, so we may be seeing results by this afternoon. He's napping now

(I know there are a lot of photos of him sleeping, but I usually don't have any hands free when he's awake!) before his feeding team appointment. We're going to watch him to see if he does the 5-9 p.m. scream like he did last night, and if he can eat & drink enough. If he really seems okay, we can go home at bedtime or so. If not, we'll stay here & they'll arrange for an endoscopy. They're also going to do a blood test for H. pylori, on the recommendation of the GI fellow.

I'm feeling much better than last night. Thanks for all the phone calls. We're hanging in.

quck morning update

Lars was on IV fluids overnight because he's still not hydrating enough by drinking. They want to watch him again all day. Slept fairly well according to Andey, after some pain meds. He wore himself out screaming bloody murder for four hours last night, I guess.

Joa had a good sleep & was a total sweetheart this morning--totally cooperative & snuggly & warm. He seems to be a little refueled. We even got our solstice tree undecorated & out to the curb this morning before school. He says he doesn't feel like eating when he's too worried about Lars ("I just can't take a bite") so he's substisting on pediasure. I told him some people, like him, don't feel like eating when they're stressed, and other people, like me, tend to eat more. So it is. More later. Love you all. Thanks for reading.

a few smiles, more wailing

Lars is still screaming a LOT, starting after his nap today- so much so that he sent his body temp up more than a degree. He is clearly still in pain some of the time, though thankfully slightly less time than he was. The difference is he was willing to eat today, nearly enough to sustain him, though probably not enough to regain any of his lost weight.

He is much more uncomfortable lying down & seems better the more he's upright. Unfortunately he is still unwilling to sit like he used to do & he just lies right down in 10 seconds or something.

He drank about 7 ounces today, which is better, but less than half his usual fluid intake.

These docs seem to be out of ideas.

We may just bring him home tomorrow (Wednesday 1/10) since he can scream at home as well as at the hospital & there aren't 3 other screaming children in his room at home. Anyway, these docs are not willing or able to follow through on any of the things we're requesting over & over- like a GI consult, an endoscopy to check on esophagitis, testing for food allergies, a neuro consult because we learned migraines often manifest as stomach pain in children... so we can do all that on an out-patient basis.

He still hasn't moved his bowels since they cleaned him out, but they have NO answers to questions like

-How do we stay on top of the constipation issue if he got constipated before while having regular bowel movements?

-WHY, a month or so ago, did his stool essentially get stuck at the beginning of his large intestine & then build up stuff around it?

-Since he was on a fairly intense bowel regimine before this happened (miralax, benefiber, flax seeds & prunes every day), and it happened anyway, how do we prevent it from happening again? And how will we know if it is happening again if he is routinely screaming when his intestines are empty or full just the same?

-If this is reflux, why didn't we smell the acid smell of stomach acid?

-Why don't we experience him dealing with stuff coming back up like we do when the reflux we've been dealing with since birth flares up?

-What is the best way to deal with this kind of pain?

-What should we do if he is unable to eat or drink enough to sustain him at home? how much is enough? How low does he go before we bring him to the ER for an IV?

Just by chance, we happen to have an appointment with the feeding team tomorrow (it was made at least six months ago), so maybe they can help with some of this.

We were also thinking of calling Chuck Berde, who's a friend of Andey's & mine from when we worked at children's a decade ago. He's chief of the division of pain medicine & a great guy. He helped us out when Lars was tiny & starting to have seizures.

Lars' seizures, by the way, have been very well controlled for the past couple weeks!! The depakote finally got up high enough, I guess. This may be the longest he's gone without a seizure since...August 30, 2004.

Denise brought Joa out today. He's been holding it together when he's at school or in public, but really fell apart at home last night and this morning, over & over in a characteristically dramatic way. Kali also came to visit at the hospital while Joa was there & he was really happy to see her. He was also quite happy about the Pokemon ex cards I bought him on ebay & gave him tonight. I was supposed to be saving them for his half-birthday (2/21), but I'm never any good at that & this seemed like when he needed them.

Here are a couple of Joa's recent experiments with the in-laptop camera. The first is using one of the special effects options, and the second is his shirt!



I came home with Joa tonight, Andey stayed with Larsman. Joa & I talked on our way home about what we wanted to do with the little bit of awake time we would have after coming home. He wanted to make tea, curl up on the couch with me, and "talk a little about life." Which is just exactly what we did. He said his life was "really bad" right now because he really wanted "Lars to be okay, not to be screaming or in pain, and to come home from the hospital." He was so sweet & wonderful. We read an old, reassuring, sweet & funny book, Rattletrap Car, and he fell asleep in moments.

This afternoon Ruth took me out of the hospital & over to starbucks & bought me coffee & listened, listened, listened. 'Twas fantastic. Here's my honestly tired self-portrait of the evening, taken just a moment ago.

I'm sooooo looking forward to my very own bed tonight & no interruptions or beeps. I'm going back to the hospital very first thing in the morning. G'nite.

long night, long morning

Okay I'm officially tired. Lars was up, restless & uncomfortable for most of the night, starting right before I got ready to go to sleep. The only solid sleep that was to be had was between 6 & 7:30 this morning. He was on IV drip overnight, so he got re-hydrated, which was wonderful. Both of us soaked head to toe in urine wasn't as fun, but hey it's a small price to pay for hydration.

He was a little fussy when he first started eating this morning, but after a 20 minute break he ate like a champ with no apparent pain (!) (knock on wood): GO LARS!!!!! Then he wanted to be held & danced & walked & bounced for 3 1/2 hours until he fell asleep around 1:30 or so. He was very much against being set down for even half a minute, so my arms, back & neck are reeling. Andey just arrived & is rescuing me for a while. We're waiting to see how he does with waking from the nap, with his next meal, and with a bowel movement, which he hasn't had since he got all cleaned out Sunday. The docs have given him outpatient referrals to the allergy clinic to run IgE levels and RAST assays to test for food allergies, to the GI department, and to CCS, the coordinated care service for children with complex medical needs.

Ruth just came to visit !! Yeah!!!

the evening has passed

Lars continues his pattern of napping, waking & being happy for about 20-30 minutes, then getting grumpy. We feed him 'cause he seems hungry. He happily eats for a while, especially cheerios, then he starts fussing, then he starts screaming & arching his back & bringing his knees up. He won't even think about taking a sip of water most of the time. We definitely can't get enough food into him to keep him going. He's lost four pounds, from 35 to 31 pounds.

We had lovely visits this evening from Denise


and from Julie, whose photo we didn't get, and from CarylBeth, who did a fantastic job putting Babyman to sleep.



He's so sweetly sleeping now.


A friend wrote that she would "...invite him on an out of body trip to the stars tonight. I'll incubate a dream together." I love that.

Someone asked what this has been like, and so I thought about it & my answer is that this whole ordeal hasn't really been that bad for us. It was more frightening for a while because there were so many unknowns. Now it's awful when Lars is in terrible pain, but it does pass. The docs feel fairly certain they've ruled out all the major life-threatening illnesses it could have been, so we're just slowly traveling down this path of discovering the source of the ongoing pain. We'll figure it out, and we'll move on. It's a nuisance, but it's not catastrophic by any means.