Sunday, December 8, 2013

more words i don’t know how to say.

well. it’s been quite a couple of weeks. it’s been quiet here on the blog, and for good reason. i talked about the stomach bug that went through—3 of the 5 succumbed in the end. that was tag-teamed with the googiedaddy coming down with a massive flu and possible infection on top of it. dude, he was so sick. dude, i just said dude.

it was not a pleasant week. i lost track of how many times i changed sheets, how many loads of laundry i did, how many cups of tea and ginger ale i poured.

and then you think I AM SO OVER THIS and your dad texts you and says mom is really sick not sure if should go to hospital. so i drove over to find my poor momma curled in a ball on the bathroom floor with waves of pain. dad and i got her in bed, and after conferencing for a few minutes decided it was off to the hospital.

eventually i instagrammed a pic of my #DAREcember challenge from the room we were in…when we thought it was just a nasty stomach bug and she’d be home after some fluids. HA.


that was last sunday, she just got out of the hospital yesterday. it wasn’t a nasty stomach bug. actually they’re not really definitive on what it was, all the tests came back negative and ruled out e-coli and other bacterial nasties. but she was—and is—really sick.

so then you’re basically like I HAVE HAD IT UP TO HERE AND SO HELP ME I WILL CRY IF YOU LOOK AT ME CROSS-EYED. you know, your basic threat level orange or whatever.
and you know, in the best foreshadowing fashion, that this is where it really gets fun.

wednesday morning i jumped into the shower and called for gigi to come in with me. she’d been congested and i wanted her to try and clear out in a steamy shower. as soon as she took off her clothes and jumped in with me i noticed three dark bruises—two on her arms, one on her right hipbone.

here’s the thing: i can’t tell you why i knew they weren’t right. i have five children. i’ve probably seen 6.4 billion bruises in my mothering career so far. these were…off. they weren’t very large, but they were dark purple and in very odd places.

she doesn’t attend preschool and is rarely not with me, but i still looked in her eyes and asked if anyone hit her. she said no.

so we got out of the shower and i lotioned her up, taking that time to give her a good lookover. i noticed that she had little red dots on her neck, as if she had scratched it and broken tiny blood vessels. she also had a severely chapped lip—her bottom lip looked like she had chewed the snot out of it and was scabby and bloody. she had woken up with that a few days prior.

fortunately i have that honorary doctorate from google, which comes in super handy at times like this. i was simultaneously googling “dark bruises + chapped lips” while texting jeremy “please tell me i’m crazy right now, mmkay?”
he’s a good guy, so he complied.
”you’re crazy, calm down, she’s fine. she’s klutzy.”
but he wasn’t quite fast enough because i’d already found my answer: ITP. Immune or Idiopathic Thrombocytopenia Purpura.
winner winner chicken dinner.

ITP is basically your immune system going haywire. it begins attacking your platelets—the cells in your blood that are “sticky”—the ones responsible for clotting. when your immune system attacks your platelets they die off faster than new ones can be made in your bone marrow and your numbers plummet. normal platelet count is 150,000-350,000.
symptoms: bruises, bleeding of the mucosal membranes (i.e. lips), petechiae (the little red dots all over her skin).

it was too close. the symptoms fit too well. i was most definitely edging toward threat level red.

jeremy texted me back. i read about that thing. i think you should call the doctor.
so i did.
we were there by 11:40. the PA we saw (who i will never, ever see again) initially downplayed.
well kids get bruises.
eyeroll from me. okay thanks i guess i’m an idiot. listen to me: these are different.
then i showed her the neck dots. that got a response.
we headed off for bloodwork—which means wrapping my legs and arms around my baby while she screams and begs for this NOT to happen. ever done it? it’s not pleasant.

you know that feeling when you just KNOW? every fiber of your being just knows? i spent thursday alternately eating all my fingernails off and trying not to cry or puke and calling the doctor’s office to pressure them a little more. they finally called back at 11:30.
everything came back normal. RBC, WBC, all perfectly normal. oh—but her platelets clumped so we didn’t get a count on them. so we’ll put in an order for more labs.

ARE YOU KIDDING ME? the one number we needed was the one number we didn’t have. and now i have to go through the holding my baby down process again.

by thursday night she had a lot more bruises.

friday morning. i said to jeremy “do you think they check all the labs that come in and see if anything is really bad and they call them right away?”
our phone rang at 8:50.

gigi’s platelet levels were 23,000.

the PA was completely nonchalant about it. i’m going to have you make an appointment with a hematologist for followup.

i was like uhhh…wait. what? because i don’t know about you but i’ve googled this and i’m thinking 23,000 is a little more serious than “call a hemotologist for an appointment”. so she said if i wanted she could call too.
then i punched her in the neck.
okay no i didn’t but i said thanks but no thanks i’ll make my own phone calls.

we called a few different resources and hospitals. the PA called back.
uhhh…i spoke with the hematology department at CHOP and they’re working on an appointment for gisele but if they can’t get you in today you’ll probably have to take her to the ER.


we packed for an overnight stay. we dressed. we were waiting for a last call back from a hospital in NJ. a nurse from the ped’s office called again: umm, **** (the PA) heard back from CHOP and they said you need to take Gisele to the ER right now. are you going?

saying that i was angry is a little bit of an understatement.

we got in the car and drove to the ER. we’re fortunate to be a 1/2 hour drive from some of the best hospitals in the U.S., but that doesn’t help at all when you’re taking one of your babies there.

gigi was cool with the hospital idea. we told her that her blood was sick, and she needed to go to the big hospital so they could help her. yes, she’s going to have to have more bloodwork. we explained an IV as best we could. she was less cool with that.


and from that point it basically went as expected: our nurse was awesome. like really, really awesome. she placed an IV, then took more blood for labs. we waited.
her platelets were up to 43,000.
the hematologist came down and talked with us. at that point it was basically confirmed for us: gisele has ITP.
her platelets had gone up and that was a good sign, but it didn’t change things too much. her risk of bleeding remained basically the same. what’s the treatment? well there’s a few different things they can try. but the bottom line is her body has to do this on it’s own. the treatments are just temporary stopgap measures, and with a level of 43,000 we can wait and watch and see if her body can figure it out on it’s own. there are children walking around with much lower numbers.
meanwhile: no wrestling, no jumping off things. if she bangs her head, immediately back to the ER. if she has a nosebleed or bleeding from anywhere that’s excessive or we can’t control after 1/2 hr, back to the ER. car accident or any major trauma, back to the ER.

ITP in children has a very good chance of spontaneous remission—it will go away and that’s it. it can take up to 9 months, it can happen in a couple of weeks. there is a chance it could become chronic. but we’ll cross that bridge if we come to it. 

gigi goes in monday morning to the hematology clinic. she’ll have bloodwork again to check her levels. driving 95 with her…ugh. i asked jeremy if it was insane to make her wear a helmet in the car? honestly, it’s not—the hematologist offered to send us home with one if it made us more comfortable.

so this is our new normal. i’m going to be 34 this month, and i didn’t really have any grey hairs. but everyone knows—these little rugrats will give ‘em to ya. a 5 year old with a platelet count of 43,000 who is trying to ride her new scooter through the house? i could feel them sprouting in my head.

in truth though, this, right now—knowing what we’re dealing with--is 1000x better than the not knowing of wednesday and thursday. it’s another thing to roll in to our life and keep on going.

as soon as we can remember how to say it.

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