ouch, again

Larsman started feeling badly again late yesterday afternoon, and through the evening he was screaming off & on. He was able to move his bowels just before 11 p.m., felt better, smiled & fell asleep jabbering happily. This morning he started crying almost the moment he woke up & has continued intermittent painful cries all morning. It seems like reflux, where last night seemed like constipation.

This is the cycle the docs eventually settled on at Children's: constipation & reflux due to low tone (which is a neurological issue). We thought we had it under control with the addition of prilosec for reflux & senna for the motility end of constipation. Apparently this isn't enough to keep him out of pain, though. Is he backed up again?

Went to PT to see Alice this morning & cried a lot. We have an appointment with urgent care at our local pediatrician (although our doc is out because of the holiday) at 11:30. The nice nurse who called us back said, "Oh, I'm afraid they'll just tell you to go to the ER again."

I tried to find out the results of Lars' H.pylori test. The nurse on 8 West was able to tell me that the results were complete, but not what they were. I have twice paged the attending doc in GI at Children's in the last hour & a half, but so far no call back.

Andey reports from the field that Lars has fallen asleep & they're going to nap in the van until the 11:30 appointment.

Here's hoping he's at least having sweet dreams-

1:30 p.m. update: All the docs say is basically, "Too bad, so sad, I guess you have a kid in pain to deal with. It's not serious if it stops sometimes, it's not serious if he can go to sleep. Have you tried pepto bismal?"

Lars' new swing

This is who Lars is when he's not in pain.

post-bath nap

the "mama got Lars to eat from a spoon by putting nutella on it" series

the brothers on Solstice morning

ahhhh

I couldn't get a photo of how fabulously wonderful the swimming pool was yesterday: I haven't seen him that happy & excited & energetic for probably a month and a half. It was fantastic. And tonight's bath, as you can see, was also quite wonderful.

One of the things I'm noticing about Lars lately is that he's showing an increasing tendency to withdraw & disengage, disappear into his own world unless we continually work to keep him engaged in this world. When I think of how much my vision and my intellect are what keep me engaged with what's around me, it makes total sense.

I got photos from holiday time downloaded from the camera & just might have to post a bunch of them...

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!