Saturday, January 13, 2007
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...
Friday, January 12, 2007
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-
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-
Thursday, January 11, 2007
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.
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.
Wednesday, January 10, 2007
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!
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!
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.
(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.
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.
Tuesday, January 09, 2007
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.
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!!!
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!!!
Monday, January 08, 2007
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.
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.
6:30 p.m. Monday
We're in a holding pattern here, basically. Trying to get Lars to eat a little, observing him while he's very upset, trying new & more aggressive reflux and constipation medications & doing more observation. They are basically saying he's not going home any time soon, that they want to figure out what this is & have him in here until he can eat, digest & eliminate without major pain. Sounds good to me.
My latest thought--from a question from a friend--is whether he might have developed food allergies. No one has mentioned it, but we are going to request testing, insofar as they test for such things here. So please, keep the creative questions and ideas coming. We need to think from all different angles on this- the more brains, the merrier.
Denise brought Joa here from Sudbury Valley this afternoon so I didn't have to leave, which was greatly appreciated. Andey's here rocking Larsy while Denise buys Joa his requested pizza & rice krispies at the cafeteria. Andey & Joa will go home soon- CarylBeth's coming to hang out with us a bit tonight. Andey's cousin Jean, who works at the Brigham, was here for a while this afternoon & got Andey over to the coop & involved in a three-brand taste-test of dark chocolate.
Ah, Joa came back- with his second piece of pizza.
Lars is feeling really sad. Not even a nice walk down to the lobby to listen to the wonderful contraption did the trick. We just found out that we're in the only four-bed room in the whole hospital. And it's full. Lucky us. I brought ear plugs, so perhaps it'll work to sleep in the bed with Lars & feel him when he wakes.
My latest thought--from a question from a friend--is whether he might have developed food allergies. No one has mentioned it, but we are going to request testing, insofar as they test for such things here. So please, keep the creative questions and ideas coming. We need to think from all different angles on this- the more brains, the merrier.
Denise brought Joa here from Sudbury Valley this afternoon so I didn't have to leave, which was greatly appreciated. Andey's here rocking Larsy while Denise buys Joa his requested pizza & rice krispies at the cafeteria. Andey & Joa will go home soon- CarylBeth's coming to hang out with us a bit tonight. Andey's cousin Jean, who works at the Brigham, was here for a while this afternoon & got Andey over to the coop & involved in a three-brand taste-test of dark chocolate.
Ah, Joa came back- with his second piece of pizza.
Lars is feeling really sad. Not even a nice walk down to the lobby to listen to the wonderful contraption did the trick. We just found out that we're in the only four-bed room in the whole hospital. And it's full. Lucky us. I brought ear plugs, so perhaps it'll work to sleep in the bed with Lars & feel him when he wakes.
we're on 8 west
We got to our room--811D--at about 3 a.m. They ruled out pancreatitis last night & so they think that all the big scary things that it could be are ruled out. That would be even more of a beautiful thing if we knew what the heck was going on !! They're going to keep him through today & tomorrow & observe him. They took him off his IV drip & we are trying to feed him so that he can show them what he feels like as food is moving through his system, which is basically like...um, how to say it delicately...like he's in a vice grip. His painful cries when he's trying to digest are remarkable in their intensity and violence, and basically look just like they did when he was totally impacted with what they're calling "very old" stool (...how old they can't tell us...I guess they don't have any archaeologists on staff...).
When he's not digesting, he's very crabby & grumpy most of the time, with moments of okay-ish. He wants 24 hour snuggles & by gosh that's what he'll get if that's what he wants. They tried many times on the IV last night & kept blowing veins. It ended up on the top of his left (currently primary) hand, so he can't do his regular exploring, etc., which frustrates him.
They have no answers yet. Why did this happen in the first place? Could the bowel & pain be a symptom of something else, rather than the root of the problem? The morning doc said it "had to be" either reflux or constipation. It has to be?? Really?? I don't know.
Andey's going to stay the afternoon while I go get Joa & bring him here to see us for the evening, then she's going to go home for the night & I'll stay here. Visitors welcome any time. We're in a big room with four beds this time, having given up our lovely private room yesterday. Oh, well.
I'll get a new photo for you soon!
Thanks for checking in- We certainly have a remarkably wonderful circle of friends & I am deeply grateful for each one of you. Keep the candles burning & the good thoughts flowing.
When he's not digesting, he's very crabby & grumpy most of the time, with moments of okay-ish. He wants 24 hour snuggles & by gosh that's what he'll get if that's what he wants. They tried many times on the IV last night & kept blowing veins. It ended up on the top of his left (currently primary) hand, so he can't do his regular exploring, etc., which frustrates him.
They have no answers yet. Why did this happen in the first place? Could the bowel & pain be a symptom of something else, rather than the root of the problem? The morning doc said it "had to be" either reflux or constipation. It has to be?? Really?? I don't know.
Andey's going to stay the afternoon while I go get Joa & bring him here to see us for the evening, then she's going to go home for the night & I'll stay here. Visitors welcome any time. We're in a big room with four beds this time, having given up our lovely private room yesterday. Oh, well.
I'll get a new photo for you soon!
Thanks for checking in- We certainly have a remarkably wonderful circle of friends & I am deeply grateful for each one of you. Keep the candles burning & the good thoughts flowing.
Back in the ER
We're unfortunately back in the ER tonight, Sunday 1-7-07. They sent us home from 9 South this afternoon after Lars had a clear x-ray, and was eating and perked up significantly. Around the time when we got home, 6 p.m. or so, he started violently screaming & writhing in pain. We were unable to get him to stop, and we brought him back to the ER. They've done a full ultrasound so far, and didn't find anything remarkable. They are doing bloodwork now, and re-admitting him tonight. There's a chance that his recent additional seizure med, depakote, has caused pancreatitis, and they're checking that. Sounds like we're going to 8 West this time...
If you're just catching up with us, we were here Wednesday night, back Friday night, admitted Fri-Sunday, and now back Sunday night... Here are earlier pics & updates:
~~~~~~~~~~~~~~~~~~~~~~~~~~~
Saturday:
Lars had been feeling worse & worse. We took him to the ER Wednesday night. He turned out to have a very impacted bowel even though he'd been moving it. Three enemas later we thought he was all cleaned out but then he was in acute pain, writhing & screaming inconsolably for hours & hours again Thursday, so went back for more x-rays. He still had a huge mass of stool that had only moved a little ways, still in the upper large intestine. He hadn't eaten much since Tuesday & was really miserable.
After several more enemas, Friday we went back to the ER & he was admitted to Children's Hospital. The x-rays looked much like those on Wednesday night had, in spite of lots of enemas, exlax, mirilax, etc. They put an IV in & an NG tube up his nose & into his belly. Last night and today they've given him 1600 cc's of "go lightly," and two more enemas, but no results. They're going to keep doing enemas every two hours all night. Official party line is still that it's old stool just being stubborn, and they are going to do their "clean out" regimine until tomorrow morning. If there's no movement by tomorrow morning, then we go to plan "B." I'm not sure what that is. At this point we're really hoping it's just poop in there, not some other growth, & that it's NOT attached/calcified to the intestine wall. Haven't done any more x-rays. He's had 6 in the last 3 days- one of the nurses said "we don't want him to glow"....
Joa has been hanging out with friends & went to a great sibshop today (http://www.siblingsupport.org/) Andey's working tonight & I'm here with Lars. Let's hear it for laptop and wireless internet!
AND for the camera in the laptop!
~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sunday:
Okay, thanks to all of your images of waterfalls, mudslides, volcanoes, waters eroding hillsides, dams breaking, levees breaking, irrigation, embankments eroding....... and Mama singing Cris Williamson's Waterfall over & over.......and with a little help from go lightly and enemas every two hours...... we early this afternoon we achieved a clear Lars intestine!!!!!!!!!!!!!!!!!
Whew.
He felt immediately much, much better-- perked right up, started eating (in spite of the tube running down the back of his throat), making happy sounds (that we haven't heard in days), smiling (which we haven't seen in days), and his color improved before my very eyes.
Napping a little now, waiting for tubes to be extracted & for the GI docs to come visit, then they'll spring us out of the hospital later this afternoon or early evening. Fresh air, here we come!
YAHOO!!!!!!!!!!!!!!!!!!
Subscribe to:
Posts (Atom)
