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wife. mom. adjunct professor. we homeschool. i'm a little bit OCD. i love math. bright colors and geometric designs make me drool. we live with a medical rarity, and Jesus saved his life. through that, Jesus is changing us. The american dream and status quo is overrated...and sometimes just plain wrong. our lives, our family, our careers, our faith are all now filtered through a new lens-- thank you Jesus. welcome to our crazy. feel free to take some of it with you, we have plenty to go around.
It's not the load that breaks you down; it's the way you carry it.
-- Lena Horne

The thief comes only to steal and kill and destroy; I have come that they may have life, and have it to the full.-- Jesus Christ

Tuesday, July 20, 2010

you might've been in the hospital too long if....

I wrote about some of this awhile back, when we were living in the hospital. I will try to come up with some different material this time....

Sure-fire ways to know you've been in the hospital too long...

1. You know the code to the laundry soap locker, albeit written on the laundry key itself, by memory. And when someone walks in the laundry room and sees you getting soap out of that locker, they tell you that isn't for patients.  (In our defense, our PICU nurse way back in August last year DID tell us to use that soap, so that's the soap I always use.)
2. Things (SOME OF THEM) have lost their gross factor.  Like....oh, who am I kidding? almost everything is nasty here.  But when I was opening that locker in the laundry room, I thought, how many people touch this? I don't even care.  But that's it.  The washer still grosses me out, even when I bleach it myself.  So does the dryer. And the chairs in there. And the door knob.  And our room is still nasty, and I clean it myself.  And even after it's been cleaned, if I swiffer it myself, I get things like this, repeatedly:
don't vomit.
3. You know what you want and when you want it.  You know what time (most) things are due.  You know how to do most everything that is being done to your child, and it makes you somewhat antsy when others are doing it, even though you love those said others.  And you know when to refuse things.  As in....a recent ER visit (which took FIVE HOURS to get us admitted.  sheesh people, really? the kid needs blood.  ridiculous.  it also took THREE sticks before the nurse conceded to let someone else try to access Ridge's port.  No wonder we are freaked out by germs/port infection/whatever.  Props to the ER, however, on being able to find Ridge's veins on the first try, usually.  But we'll leave the port to the people on the 10th floor.)...ok, recent ER visit.  XRay lady comes in (she doesn't have xray vision or anything, so even though that reads like she is a superhero, she is not)-- and says, "We're here to do a chest xray" to which strong Bdawg replies, "uh...why?"  and she says, "i don't know." and he says, "yeah, we're not doing that."  "well, i can find out why for you." "no, we just had one three days ago. we aren't doing that."  and we didn't do that.  i hate xrays and ridge has had a billion of them and i don't want to do anymore. unless we have to. and we didn't have to.  so we didn't do it. at all.  and the world stayed together.

4.  You get mega annoyed at stupid rules.  And rules that haven't been used before, but are now being used, even though you've been here a year and "that" has never been done.  Things like the pharmacy making you send your $6 a day medicine to them, so that they can make a barcode for it, so that you can have your own medicine scanned so that you can give it to your child...although you give that medicine every time you are in the hospital, and NEVER has pharmacy asked for it.  And on a side note, when we were LIVING here, they carried that medicine.  But now, they never have it.  Well....if you want to be able to scan it....get it so that we don't have to use ours when we are here. Seriously. That's stupid.  Really Really stupid.  There're a lot of stupid rules.  But that's one.

Now I'm all distracted so I can't type any more lists.  But here's the updates.

Ridge's port is infected. Again. Or still.  So we are running antibiotics.  Maybe we will have to take it out- major surgery- or maybe we won't.  It is being discussed.  I am over it. Whatever we have to do, we will do.
Meaning, whatever is BEST, we will do.
Tomorrow, we go to zero on the octreotide.  Yes, people, that is right.  We will have to keep his central line awhile, especially if the port is removed.  But not forever. Maybe we won't get to have summer water fun, but 2010 WILL bring a bath for Ridge.  Lots of baths.
Ridge is growing. 2 lbs and 2 inches this month.  And jabbering twice as much, at least.
We are leaning heavily towards homeschooling S-Puppy this year, bc if we are in the hospital this much, it will be difficult to pick him up from school at 11:30ish, so I have ordered some materials and we will be starting a trial soon.  I am kind of excited.  And kind of freaked out.  It will be a new adventure.

And now a few pictures to entertain you.

We took Sawyer to the Children's Museum in Seminole the other day....

he had fun.  

We also had a family karaoke night the other night. BDawg and I had fun.  And this is the only picture I have of Ridge from recently.  And it's hilarious.  He looks so tiny!

And Noah was born this month.  Here are some pictures of his cuteness.

That's all, folks.


Twin-Daddy said...

I don't know you, but it's clear to me that Ridge has the best mommy that he could have ever hoped for..

My own children spent some time in the NICU, it was a wild ride..

The best thing for babies is growth, and it seems you've got that going on, then it's just waiting for growth..

Keep it up!

Kili @ Live Each Moment said...

Hey, I live in Seminole, give me a shout out next time...although I was probably on vacation when you came.

So sorry you have to go through this, so frustrating, and I'm sorry!

wrensmommy said...

oh man... we've only had a tiny taste of "too much time in the hospital".. and to top it off we didn't even know our daughter. i can imagine how AMAZINGLY frustrating it must be to know your little one so well and have strangers so involved. you're a great mom to be able to handle it all with such grace and strength.

we'll be praying for baby ridge, and for your whole family.. that God can give you peace and hope and grace for whatever situations you face.

it's weird- i've only been following the blog for about 8 months or so- and it seems like your boys are growing so much!!!

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