Well that last post was a while ago. At least it seems like it. There have been some "changes" and disgruntled doesn't even begin to cover it.
Sunday night, they thought the problem may be with her depakote. Something my mom and I have both mentioned. She started it on a Thursday and began vomiting the following Wednesday. At the same time, she typically starts vomiting 1.5-2 hours after she eats. Depakote side effect/ warning signs include lethargy, vomiting, dyspepsia.
As of this morning, Sprout has lost nearly 9kg since our trip to Shiner's at the the end of January.
Monday mid-morning, they had decided the problem lay with her pyloric valve, which allows food to move past the stomach into the intestinal tract when its time. If it doesnt open, the food comes back up. The Pediatrician (not ours, but the hospital one) and GI guy had some differing opinions. The GI was a consult, however it seemed almost as if HP was discounting his opinions. I can't count how many times I heard that he was "just a consult" not a decision maker.
Tuesday afternoon, much to my surprise they told us that we were going home that night. They also told me that Sprout would be randomly puking for as long as the next two months, until her pyloric was 're-trained'. I stressed that in the hospital, everytime she vomited or had some other incident, it took 2-3 people to fix her up.. and I'm alone.. and have a bad- fresh from surgery back. They made it sound like we'd be peachy fine.. Sprout would be able to go to respite etc.. not too big of a deal. (1-2 pukes, no big deal, more than that.. she'd need to come back)
We arived home between 8 and 9. I was exhausted and froze my ass off trying to get things coordinated and into the house. My mom came over and helped me get Sprout into bed. I worked my way though her giant ass list of new medications and tucked her in. I fell asleep while checking my email.
Clearly Mr. Not Too Big of an Issue (pediatrician).. lied.
Wednesday AM (her birthday) she woke up at 7am and happy but weak. My mom had to hold her upight on the toilet. She was eager for breakfast and took her pills with half a pudding pack. When it was time to get ready to go to respite care for the day.. she started to get really droopy and spacey. While we were getting gas she decided that she didn't want breakfast. Halfway down the highway, she disappeared from my rearview mirror. She was folded up in the back, chin in her knees and not talking. I pulled over and poked at her, and called my mom. We met mom at her office.. just before nine, and Sprout began vomiting.
Sprout vomited until 2pm. I called the doctor (as instructed >7 vomits? = big deal to me). Would you believe her pediatrician was never even notified that we were admitted? Which is why we never saw her, just random hospital dude? She sent us back to the ER, and we were re-admitted last night. Ask Sprout how her birthday was. I dare you.
She improved greatly after 9, went to sleep around 11. She vomited once this morning mid-pills. We think that was more of an over active gag. At this point, she is having difficulty taking her pills, and pretty much has to gag them all down. She ate breakfast at 9. She went to sleep shortly after, and started vomiting in her sleep.. about 1130am and kept it up until around 230pm
I met with HER pediatrician this morning.. I discussed our concerns with the Depakote, she is going to have Sprout's neurologist look things over and come visit with us as well. She is scheduling an upper GI for first thing tomorrow morning. We then saw Dr. Z, the GI specialist. came by a short time ago. He is scheduling Sprout for a contrast dye thingie and endoscopy.
Her pediatrician hugged her when she left and told her she's be back tomorrow and Saturday. So I'm guessing we're here until at least then.
When we were discharged they told me they'd forward our mail to our house. I need to find out if there is a way to have them redirect it here to the sixth floor instead. (room 623 for you locals). I know we wont show as a 'room change' because we were actually discharged.
Dinner tonight is a pile of suck.
speaking of.
yays and thanks to my monday crew. monday night eliza and alicia showed up with books, movies, knitting and snacks! and coffee! Lynn came and brought coffee too! yum. lynn also used her laptop to test for a wireless connection.. i have a spotty weak one.. but its here!)
unfortunately all my grocery snacks are in my apartment (maybe i can get my mom to bring them back up tomorrow?)
15 February 2007
12 February 2007
the loosest definition of "plan" i've ever seen
they decided last night- this am that they think maybe its one of her medications causing this trainwreck (let me interject that my mom and I have mentioned said new medication to anyone who would listen, althought most don't seem to be at all).
this am they had a "plan" which is a term i use loosely. then, Sprout had some broth and then puked all over their plan.
They were going to let her have solid food today to see what happens.. but she drank her broth this am... first thing in since vomitting friday night.. and, then she took a bath.. and heaved it all over me.
You've been asking about visiting us/ sending her something.. at this rate, we will be here until at least wednesday... you could send something to our home too- she'd still get it. even when we're done here.. we wont be rushing back to school.
we were going to make some construction paper decorations today.. we'll see if she's up for it later.
ugh.
she's so weak getting up for a bath or to go to radiology, requires a three hour nap afterward
this am they had a "plan" which is a term i use loosely. then, Sprout had some broth and then puked all over their plan.
They were going to let her have solid food today to see what happens.. but she drank her broth this am... first thing in since vomitting friday night.. and, then she took a bath.. and heaved it all over me.
You've been asking about visiting us/ sending her something.. at this rate, we will be here until at least wednesday... you could send something to our home too- she'd still get it. even when we're done here.. we wont be rushing back to school.
we were going to make some construction paper decorations today.. we'll see if she's up for it later.
ugh.
she's so weak getting up for a bath or to go to radiology, requires a three hour nap afterward
i just came to check email quick..
i gotta run.
more later as it happens.
11 February 2007
blech. where to start...
Still at hospital, no sign of leaving anytime soon.
For those playing along at home.. Sprout's birthday is on Wednesday.. you know, Valentine's day. She's going to be 12. Most likely, she is also going to still be here.. at the hospital.
I didn't get a chance to update anything yesterday, because yesterday was busier than hell. Thursday night, Sprout puked up her GI tube around 4am. When the resident came by, she said they were going to have to restart it in order to finish cleaning out her GI tract and the associated impaction/ blocking. Then the hosp. pediatrician for the day came around and told me we were NOT going to do that.. but instead were going to start Sprout on solid food and see if she barfed. If so, then we were going to do an xray.
I'm beginning to lose patience with the doctors. Where the hell is ours at? At some point will I see the same face on a day to day basis?
Sprout ate 2 teeny bird bites of a grilled cheese sandwich, and had 2-3 sips of tomato soup. Then she went to sleep. Dinner rolled around and Sprout ate half a cup of yogurt and a lunchable. (the little square kind). Two hours later, she and I were both wearing that, the lunch, her pills (which she ended up vomiting up three times- the fourth time i was able to get the anti-seizure meds to stay down) and some yummy yellow stomach acid-sludge.
The attending that came Saturday am.. asked me about Sprout's stools.. I said everything coming out- which isnt much- is water with poo flakes. She said "Good that means we've reached the end of her cleansing." I almost took her head off. NO, NO WE HAVE NOT REACHED THE END!! Only one wee stool has come out.. and that was on thursday! The water is going around and not actually taking anything with it.
I snapped. I started throwing a fit. We don't have A doctor. We have a bunch of residents and whatever attending is in charge that day. I started asking what it was going to take to get a GI consult because so far nothing was working, Sprout is still puking every time you wave solid food at her... and we are (were) on day eleven of this crap. Saturday btw more puking every time food was pointed at her... I told them I was putting her back on clear liquids.
I got my GI consult. We went for Xrays. Bottom half is cleaned out. The upper portion is not, however its soft and appears to be moving on its way. The doctor spent a considerable amount of time taking a history and asking questions. He scheduled us for an ultrasound of her abdomen and its organ contents.
The ultrasound was this morning and Sprout was a trooper. I just met with the GI guy about the results. There is good news and bad news.
The good news: Sprout has "sludge" in her gall bladder, combined with small gall stones. We're going to begin treating them with medication. There is something clearly wrong in the world when that is the "good" news.
The bad news: this, like the impaction, is a "secondary" problem. things that we found while looking for THE problem, that ARE problems.. they just aren't the ones we are looking for.
I just got off the phone with my mom. Who is bringing me more supplies from home. Mmm conditioner. But most importantly, she is bringing me the head room mom book. Im going to have to call and start delegating the duties for Sprout's school Valentine's day party. Right now, its looking like we won't be there. And I sure as hell can't make 90 cupcakes and treatbags by Tuesday morning.
At this particular moment, I'm not even concerned with getting better soon. I'd like them to just frickin' figure out what the hell is wrong with her.
I do not function well at all, when I have no idea what the damn problem is in the first place.
Sprout's big worry..
how the hell do you have a happy birthday in a hospital.
i need to start working on making that happen too.
ps
more thanks to everyone for the well wishes.. and jaime and diane and sara and dante for bringing me lunch, snacks, and g-string panties from the clearance rack (funny, very funny).
For those playing along at home.. Sprout's birthday is on Wednesday.. you know, Valentine's day. She's going to be 12. Most likely, she is also going to still be here.. at the hospital.
I didn't get a chance to update anything yesterday, because yesterday was busier than hell. Thursday night, Sprout puked up her GI tube around 4am. When the resident came by, she said they were going to have to restart it in order to finish cleaning out her GI tract and the associated impaction/ blocking. Then the hosp. pediatrician for the day came around and told me we were NOT going to do that.. but instead were going to start Sprout on solid food and see if she barfed. If so, then we were going to do an xray.
I'm beginning to lose patience with the doctors. Where the hell is ours at? At some point will I see the same face on a day to day basis?
Sprout ate 2 teeny bird bites of a grilled cheese sandwich, and had 2-3 sips of tomato soup. Then she went to sleep. Dinner rolled around and Sprout ate half a cup of yogurt and a lunchable. (the little square kind). Two hours later, she and I were both wearing that, the lunch, her pills (which she ended up vomiting up three times- the fourth time i was able to get the anti-seizure meds to stay down) and some yummy yellow stomach acid-sludge.
The attending that came Saturday am.. asked me about Sprout's stools.. I said everything coming out- which isnt much- is water with poo flakes. She said "Good that means we've reached the end of her cleansing." I almost took her head off. NO, NO WE HAVE NOT REACHED THE END!! Only one wee stool has come out.. and that was on thursday! The water is going around and not actually taking anything with it.
I snapped. I started throwing a fit. We don't have A doctor. We have a bunch of residents and whatever attending is in charge that day. I started asking what it was going to take to get a GI consult because so far nothing was working, Sprout is still puking every time you wave solid food at her... and we are (were) on day eleven of this crap. Saturday btw more puking every time food was pointed at her... I told them I was putting her back on clear liquids.
I got my GI consult. We went for Xrays. Bottom half is cleaned out. The upper portion is not, however its soft and appears to be moving on its way. The doctor spent a considerable amount of time taking a history and asking questions. He scheduled us for an ultrasound of her abdomen and its organ contents.
The ultrasound was this morning and Sprout was a trooper. I just met with the GI guy about the results. There is good news and bad news.
The good news: Sprout has "sludge" in her gall bladder, combined with small gall stones. We're going to begin treating them with medication. There is something clearly wrong in the world when that is the "good" news.
The bad news: this, like the impaction, is a "secondary" problem. things that we found while looking for THE problem, that ARE problems.. they just aren't the ones we are looking for.
I just got off the phone with my mom. Who is bringing me more supplies from home. Mmm conditioner. But most importantly, she is bringing me the head room mom book. Im going to have to call and start delegating the duties for Sprout's school Valentine's day party. Right now, its looking like we won't be there. And I sure as hell can't make 90 cupcakes and treatbags by Tuesday morning.
At this particular moment, I'm not even concerned with getting better soon. I'd like them to just frickin' figure out what the hell is wrong with her.
I do not function well at all, when I have no idea what the damn problem is in the first place.
Sprout's big worry..
how the hell do you have a happy birthday in a hospital.
i need to start working on making that happen too.
ps
more thanks to everyone for the well wishes.. and jaime and diane and sara and dante for bringing me lunch, snacks, and g-string panties from the clearance rack (funny, very funny).
09 February 2007
parent's resource center: day 2
Clearly my paternal family's phone tree has been activated. Everyone from back home.. my dad, brother, cousins, aunts, uncles and grandparents have called to check on us. Which is really pretty awesome of them. Maternal family asking anything? my mom. that's it. figures.
Sprout is doing.. ok. but starting to panic about being sick for her birthday (this wednesday). Apparently telling her last week when she was freaking out about it, that it was still two weeks away.. has come back to bite me in the ass now that she can count the days on one hand.
Yesterday began the process of going after her Impacted Bowel and looking for more details on the DUM (damn unidentified mass)
It was horrible when they tried to install the NG tube in her nose, down to her stomach. two words: nursing. student. he was great, however he took three tries, but was freaking out so bad she kept closing off her throat and it would just coil up. Six people holding her down.. my kid's got serious arm strength what with all that wheeling around she does.
After we were at six people.. another nurse took over and in it went shortly before 11am. at 330pm, she puked it up.. which made her REALLY freak out, and she tried to pull it out through her mouth.. I calmed her down and told her she should start training with John
lone_metalhead, and then we could have a three ring circus.
Lynnsnarkysneak called to check on us right about the time all of this was happening, and I have yet to call her back :( I'll hit your cell in a bit LYNN if you're reading this.
A little after five, we installed the second tube.. which went in quick with the same nurse who got in last time. Around 6pm the meds started to work and her tract started emptying..
there was an error in her orders, so they turned off the drip a little before midnight when they'd run 4000ccs (one jug of the goo) through her.. but she wasnt "done". We left the tube in because she was prlly going to need more stuff this am. well, 4am.. she pukes the tube up again.
she's still impacted, but we're doing a wait and see, and starting her on food again to see if she pukes it up or not.
note: the resident came in and said we'd have to restart the tube.. then the floor pediatrician came in and told me that we were going to start solid food and see what happened? if you ask me- it doesnt take a rocket scientist to figure that one out.. or even a pediatrician.. a geologist can figure that one out in short order.
so yes, today is largely going to be spent trying to see if we puke.
whee.
My friend Diane and her daughter Francis showed up with a package of socks, a toothbrush, toothpaste, hairbrush, a trashy novel (I had asked for Jim Caveziel in his "passion of the christ" costume) and chapstick with sparkles that tastes like cotton candy and a couple of stuffed animals for cait.
nate showed up with some CA Rolls. yum. yum. yum.
I'm going to go get back to the kid. if we ever figure out what all is wrong, I'll let you know.
Thanks to everyone who's been so supportive.
Love love love you
oh and Janice?
I might take you up on that pizza.
xoxoxo
Sprout is doing.. ok. but starting to panic about being sick for her birthday (this wednesday). Apparently telling her last week when she was freaking out about it, that it was still two weeks away.. has come back to bite me in the ass now that she can count the days on one hand.
Yesterday began the process of going after her Impacted Bowel and looking for more details on the DUM (damn unidentified mass)
It was horrible when they tried to install the NG tube in her nose, down to her stomach. two words: nursing. student. he was great, however he took three tries, but was freaking out so bad she kept closing off her throat and it would just coil up. Six people holding her down.. my kid's got serious arm strength what with all that wheeling around she does.
After we were at six people.. another nurse took over and in it went shortly before 11am. at 330pm, she puked it up.. which made her REALLY freak out, and she tried to pull it out through her mouth.. I calmed her down and told her she should start training with John
lone_metalhead, and then we could have a three ring circus. Lynn
snarkysneak called to check on us right about the time all of this was happening, and I have yet to call her back :( I'll hit your cell in a bit LYNN if you're reading this. A little after five, we installed the second tube.. which went in quick with the same nurse who got in last time. Around 6pm the meds started to work and her tract started emptying..
there was an error in her orders, so they turned off the drip a little before midnight when they'd run 4000ccs (one jug of the goo) through her.. but she wasnt "done". We left the tube in because she was prlly going to need more stuff this am. well, 4am.. she pukes the tube up again.
she's still impacted, but we're doing a wait and see, and starting her on food again to see if she pukes it up or not.
note: the resident came in and said we'd have to restart the tube.. then the floor pediatrician came in and told me that we were going to start solid food and see what happened? if you ask me- it doesnt take a rocket scientist to figure that one out.. or even a pediatrician.. a geologist can figure that one out in short order.
so yes, today is largely going to be spent trying to see if we puke.
whee.
My friend Diane and her daughter Francis showed up with a package of socks, a toothbrush, toothpaste, hairbrush, a trashy novel (I had asked for Jim Caveziel in his "passion of the christ" costume) and chapstick with sparkles that tastes like cotton candy and a couple of stuffed animals for cait.
nate showed up with some CA Rolls. yum. yum. yum.
I'm going to go get back to the kid. if we ever figure out what all is wrong, I'll let you know.
Thanks to everyone who's been so supportive.
Love love love you
oh and Janice?
I might take you up on that pizza.
xoxoxo
08 February 2007
the happs
first off:
she's sleeping right now, and the lady with the dog that visits hospitals is hanging out in the room, so she's tended to while I find email, food and coffee.
I'm in the "parent's resource center" at childrens hospital. since LAST week, Sprout has been vomiting.. losing conciousness.. and vomiting blood.
we went to the ER wednesday, thursday (where we were until 9am friday) and again Saturday. Yesterday, when we thought we were better? she got to school.. and promptly started vomiting blood again.. back to the ER..
We were admitted last night.. what they originally told me was some freak flu strain.. is actually a mass of unknown origin in her abdomen. they are uhm.. "cleaning her pipes" so that they can get a better look at what's going on in there.
Needless to say.. I'm freaked, worried, and annoyed they kept telling me its the flu.
the good news? there is a coffee hut inside the building open from 6am-2pm.
bad: my ex-stepfather's sister is the lady who works it. awkward.
bad: we were not packed to stay here. my mom got me some things, brought me some 'extra' things.. like two sticks of deoderant- but did not bring my toothbrush or toothpaste. i'm dressed in my gym clothes because i was going to physical therapy when cait got sick. my kingdom for a tshirt, clean socks. decent food and a toothbrush.
i'll post more when i know something useful.
she's sleeping right now, and the lady with the dog that visits hospitals is hanging out in the room, so she's tended to while I find email, food and coffee.
I'm in the "parent's resource center" at childrens hospital. since LAST week, Sprout has been vomiting.. losing conciousness.. and vomiting blood.
we went to the ER wednesday, thursday (where we were until 9am friday) and again Saturday. Yesterday, when we thought we were better? she got to school.. and promptly started vomiting blood again.. back to the ER..
We were admitted last night.. what they originally told me was some freak flu strain.. is actually a mass of unknown origin in her abdomen. they are uhm.. "cleaning her pipes" so that they can get a better look at what's going on in there.
Needless to say.. I'm freaked, worried, and annoyed they kept telling me its the flu.
the good news? there is a coffee hut inside the building open from 6am-2pm.
bad: my ex-stepfather's sister is the lady who works it. awkward.
bad: we were not packed to stay here. my mom got me some things, brought me some 'extra' things.. like two sticks of deoderant- but did not bring my toothbrush or toothpaste. i'm dressed in my gym clothes because i was going to physical therapy when cait got sick. my kingdom for a tshirt, clean socks. decent food and a toothbrush.
i'll post more when i know something useful.
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