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.