20 February 2007

an update on kindness

Just as Sprout was getting started on an art project from our stash (we received a box filled with assorted craft project goodness) two women came in and said that'd they'd gotten the dirt on her "isolation" and so long as we didn't mind they were willing to forgo the gowns and gloves and such...

Turns out these women were hospital volunteers, who came to us from The Rose Theatre. They came in to see her (and were going on to see some other children) who due to restrictions/ their condition were not able to attend a storytelling performance they did earlier today. Instead, Sprout just had about thirty minutes of up close and personal time with them, while they told her/ acted out three stories.. and made her a part of each one.

They were great, Sprout loved it, and I daresay we're going to have to drop a couple of notes (to the hospital and the theatre) for both of them.
yay for people who arent completely skeeved by coming in and making a day a whole lot better for these kids.

in which we sit

Yesterday we met with neurology, they agreed to pull her off the depakote. Apparently you don't need as long of a weaning period for the medication when you're taking it for its anti-convulsant properties as opposed to its psychiatric uses. They halved it last night, she'll have the same dose tonight, followed by cold turkey tomorrow. We'll most likely need to add a new medication in its place as the lamictal alone was no longer keeping her seizure free.

Sprout has not vomited since her episodes yesterday morning- during breakfast and just before lunch. She got up in her chair to eat lunch today, and is weak and wobbley, but now pissed that she isn't allowed to go to the playroom because she is still in isolation. Unfortunately, she's only in isolation because they are afraid she'll vomit on something, not because she is contagious.

Let's hope this lasts a bit.

18 February 2007

the endoscopy

Friday was a difficult day for the kidlet. She was tired and miserable . Friday evening Sprout had her endoscopy, when they came for her, she looked at the nurse and wanted to know exactly how many pictures the doc planned on taking, and attempted to argue that she'd had enough of those already. Unfortunately, she lost the debate.

The procedure went well, with no complications other than difficulty getting the IV in. The results? Well, at least now we're looking at the primary problem, rather than the secondary ones (gall bladder and bowel). Also, when I say "looking" I mean it literally. Dr. Z came out after the procedure and showed me images he printed of the problematic sites.

She has a series of lumps between her middle and distal esophagus and in her antrum. Her distal esophagus, antrum and body of the stomach are all red and inflamed. Her fundus is bruised, lumpy and all chewed up looking. The doc believes the latter is due to the retching. He has taken biopsies of the inflamed areas and lumps. He told me everything he saw suggested this was the primary problem, but that he didnt want to jump the gun and start interpretting without the biopsy results, He didn't want to over or understate the potential of what he saw.

What I can do, and am doing now is patiently waiting for Wednesday, because that is the earliest we will have the results of the biopsies.

Our current plan for her care is continuing the medication and trying to keep her hydrated. I'm guesstimating she is keeping one in three meals down- keep in mind there are some days where she doesnt eat at all, and she rarely eats three meals a day. Thursday the only thing she kept down was her half slice of birthday cake. Friday- nothing. Saturday she ate a few carrot sticks at lunch and half a cup of cottage cheese and a couple of bites of mac n cheese for dinner. I got all of that back with interest last night. :(

As soon as she is eating and only vomitting 1-2 times per day, we're going home, just so we can avoid catching something worse by staying here. Yesterday they thought we may go home today to await our results, but she barely ate, and kept none of it down. So we're still here. She's sleeping about 18 hours a day. My BIL and nephew came up this morning and Spog climbed into bed with her and they used her bed table to make with some crafty goodness which completely wore her out..

So, I sit. I knit. I read a little bit. I watch terrible little kid movies(presently "Annie"- not terrible but its like the sixth time this week), and read to a half with it kid, then I knit some more. And I do not, under any circumstances google phrases like "esophagus lumps".

to the gal who sent us the harry potter books on cd- Sprout listened to book one while she was in the OR for the endoscopy.
and Kelly.. the balloons and stuffed kitty were fabulous. i'll try and get a pic for you so you'll know exactly what you sent :)

16 February 2007

friday updates..

This morning we had our upper GI.. before I had a cup of coffee or my pain meds had a chance to kick in. Two things I generally require in order to start my day off with any semblence less than suck.

Spout slept fairly well.. and we went downstairs to radiology. She was quite the trooper. Due to her recent issues though, she has a hard time doing just about anything without gagging.. she managed to get 3oz of the barium down before her body started a mutiny. Just as we were making reading to install the NG tube to put the rest in, two things happened.. a small blip of it moved past her stomach so they got enough of a glimpse of the intestines to determine there was no malrotation.. and a large portion of the barium refluxed itself up into her esophagus.

We came back up to our room to await word.. Sprout rested until she started this morning's batch of vomiting. The barium came back then she switched to stomach acid. The poor thing was retching for about three hours.. then she'd doze off.. then wake up whimpering/mewling.. then doze off.. wake up whimpering/mewling and sobbing.

She is scheduled for an endoscopy and biopsies of her esophagus, stomach and intestinal walls.

Hopefully they will find something to get us going in the right direction.

as Sprout says.. "Mommy..doesn't he have enough pictures of me already?"

a sorta kinda day late birthday

They ended up holding off (for now) on the NG tube. Sprout was having a pretty good afternoon yesterday, after a not-so-hot morning. One of her favorite counselors from he summetime daycamp was one of the nursing students on the floor yesterday. Her arrival meant the NA from hell stayed out of our room after the incidents that caused me to nearly give her a verbal head-ripping. She was having a good time painting signs for her room with Miss Kim while I snuck out to assemble a make-shift birthday party.

pale? check. under eye circles? check. cake, funky head band, cheesy grin, balloons and sparkling juice? check, check and check.

Why yes, that IS a Fraggle! Red to be exact. Note the bench on the far left.. thar be me sleepin' accomodations.
It looks comfier than it is.

An exhausted girl as the company departed..

she sleeps.

Big happy thanks to Jaime, Alicia, Sara, Dante and Lynn for coming by, bringing presents and snacks.. and most of all, singing happy birthday and sharing some cake with Cait and making her night a bit more special. Thanks to Liz too for coming by in the afternoon with some loot that L&V listeners have sent to us. I need to make with some computer time and check out the episode they mentioned us in. Everyone.. friends, family and strangers have been great to us through the last couple of weeks... hopefully we'll be off of this rollercoaster from hell soon.

15 February 2007

one more thing

i might need saved.
now by saying that..
what i mean is.

I may need one (or a combination of) the following:
a) someone to keep me from killing the nursing assistant
b) someone to help me hide the body if I fail to maintain "serenity now"
c) someone to witness and testify in court that it was justifiable homicide.

this is day 16.

hospital, redux.

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?)

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.


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 Sprou
t'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.

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 Johnlone_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.


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.


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.

07 February 2007


Change in plans.
We're going back to the ER.

she isn't the only little patient

Sprout spent the weekend intermittently vomiting, I put her back on clear liquids and we've worked up to soft -squishy. Yesteday was a half day, and she is going to try for school today. Still weak, but not vomiting.

Elvis had an appointment at 345 yesterday to get his stitches out. At 4pm they took him to the back, we didn't leave until 6pm. They had to sedate him. Eegh.

No more stitches, no more tubes, but he has to wear his cone for another five days. We were given some spray to help alleviate the itching... his poor head is all torn up around his ear from his efforts to scratch an itch he couldn't get to.

He's getting skinny. :(

Today is going to be busy busy.
As soon as the bus arrives to pick up the kiddo for school, Bosley and I are heading off to the vet.. He is getting neutered today.

Then back here for my physical therapy appointment, then up to the hospital to hang out with my girl R3D and most likely give her a ride home and make with some nursing.

Today would have been my grammas 82nd bithday. Today is my sister Tiffani's 35th birthday. Sprout's got a friend who became 11 today as well.

One week from today, I'll have a 12yr old.


02 February 2007


Sprout and I went alone to the ER. We arrived a little before 3pm yesterday. The service was much better than the day before (which I don't want to rehash, but there will be a letter enclosed with the patient survey that will be arriving in my mailbox soon).

Sprout was remarkably dry. They had a difficult time getting a line in. She took four liters of iv fluid. We were admitted. It was a big ol' pile of ugly. Nothing like three days with essentially no sleep, lots of blood vomit, and whole lot of hospital loitering. She is still tired and pasty.. but looks sooo much better. We came back to Mom's this morning. I slept most of the day away. Tomorrow we're going home.

I've developed a headache, and have felt like I'm going to vomit for about the last two hours. I hope its not my turn now. I need to go buy groceries.


I did manage to whip out a caliometry while hanging out at the ER.
It might get a test run of holding my hair back.

01 February 2007

motion is bad

We're going back to the ER.

In addition to the blood vomiting, which the medication seemed to have stopped (no pukes in an hour!) after talking to my mom and Sprout's nurses.. Sprout (who has been taken to the bathroom) hasnt actually urinated since 615pm yesterday.

In case anyone is snarking.. why you postin' get to the er!
Sprout is asleep on my lap.. and I'm waiting for my mom to get here
(ie.. ten minutes to kill)

thanks everyone who's been well wishin' thus far


Sprout is vomiting again.