My friends, Tom and Sharon Johnston, you know, Seamus’ parents, came up to visit us again tonight with homemade chocolate chip cookies in hand (from a secret blog reader!) and magazines to help me pass the time. And I was telling them how hard it is to accept all the support we’re receiving. Because we are receiving a lot! And I knew they were good people to ask since they’ve been in a situation a million times worse than a silly kidney infection. So we were talking about it and they were basically saying “accept it!” when it hit me.

I finally figured out what is so HARD for me here.

It’s that we are receiving prayers and emails and gifts and magic Mnt Dew’s from close friends, family, clients, blog readers and complete strangers.

When you are ONLINE your world is just bigger.

I have gotten emails from Australia and China, packages are coming from Florida and South Dakota, sodas were sent from Ohio and Indiana. My world is bigger which means we’re receiving more than a person NOT online.

Does that make sense?

It is so incredibly humbling to get emails from people like Jordan, whom I’ve never met, telling me that she and her kids are working on a care package for Parker. Or that my blog-friend Jen sent me sodas yesterday to cheer me up (and wake me up!). Or that people are praying, literally, all over the WORLD. And all of these are people I’ve never met! People I will never be able to repay!

Not to mention all the people we DO know and love that are here for us cooking meals, baby sitting the kids, cleaning our house, mowing our grass, sending her gifts, etc.

Humbling.

And I keep saying “thank you” but those words just aren’t big enough. They don’t feel like they are big enough to cover the globe. And in my lifetime I will never be able to repay all of the kindness our family is receiving right now. But I’ll try.

So yesterday I walked down to the Vera Bradley sale in the lobby and bought a cute apron for our amazing house keeper, Doris. Doris, who brought a smile to my face on a very hard day here. And I wrote her a quick note telling her that her hard work is appreciated.

And I’m telling you this not to get a pat on the back, but to let you know, in a small and tiny way, I’m trying to pay it forward.

I’m sharing our goodies with our nurses and trying to be patient when I’m frustrated. I’m passing out magazines when I’m done and chatting with other scared parents. Of course I will send out thank you notes to everyone that’s helped us but I thought it was important for you all to know that I will do my best, forever, to pay all this kindness forward.

I told Chris I wanted to laugh today so he told me a joke. I don’t normally like jokes but the two he told had me laughing out loud…

One year, a husband decided to buy his mother-in-law a cemetery plot as a Christmas gift.

The next year he didn’t buy her a gift.

When she asked him why, he replied, “Well, you still haven’t used the gift I got you last year!”

AND

I asked my wife where she wanted to go for our anniversary and she said she’d love to go somewhere she hasn’t been in a long time. So I suggested the kitchen!

HA!

Anyone know any jokes? Wanna make me laugh today too? I’d love to read some in the comments!

If your joke makes me laugh the hardest I’ll shoot you a $5 iTunes gift card today!

Well, we finally saw the Infectious Disease doctor. Which just sounds scary doesn’t it? INFECTIOUS is not a nice word. DISEASE is equally not a nice word. I’d hate to be that kind of doctor I think.

She did not have the best news.

In short, and in exhausted stupid mom terms b/c most of the things she said made little to NO sense to me…

90% of kidney infections are caused by Ecoli bacteria but Parker has another one. One I can’t pronounce much less spell. And this type of bacteria is incredibly hard to treat. And comes back easily. Especially, possibly, when you have an extra ureter.

So tomorrow they are putting in a PICC line and she will be on IV antibiotics for 2-3 weeks at home. Which I will have to learn how to administer. On top of the five meds a day we do for her asthma she’ll have these meds six times a day.

The doctor asked if I work and when I said “kind of” (because I knew she meant full-time out of the home) she said it’s good you’ll be home b/c they only like to train one person meaning my time away from Parker in the next few weeks will be very limited. Which means working will be difficult. Which is awesome since this is our busy season.

I just feel defeated. This doc might want her fever free for 48 hours which could mean we might not get out of here until Sunday. And that is defeating. The fact that they just drew MORE blood for MORE labs and she’s been crying for 30 minutes straight. That is defeating. And loud. The fact that they have to draw MORE blood and take MORE labs in 15 minutes to test this new antibiotic combo is MASSIVELY defeating.

And I just want to cry.

But I won’t because I might just not stop.

And really, overall, on the Parker front it’s been a good day. She’s painted and colored and eaten a little. Bailey came to visit and then we got to see Grandma, PawPaw, Kelsey and Grayson when they came to pick up Bails. But then we got THE NEWS and although she’s still making good progress it feels like MY world has been upended. Because this doesn’t stop when we get home.

And I want it to just all be over.

Specific prayer requests…

1. That Parker will just STOP CRYING

2. That I can hold it together for a few more days+weeks without losing my mind

3. That Imo’s will come again today to keep the caffeine flowing through my veins so I can pretend like I’m happy

4. That Gray and Bails will have a good night home with Daddy tonight and I’ll survive the night alone.

Thanks again. For everything.

I love that there are finally some happy photos on this blog again! Even if it was from last week!

SO.

Yesterday kind of sucked until Parker took a 4+ hour afternoon nap and woke up THIRSTY! For the first time in two days! And right as she was polishing off her chocolate milk 4 of C’s soccer players walked in. Stevie, Carly, Jess and Ali totally broke Parker out of her fog! They had her giggling and playing and painting and being silly! It was seriously magical to see after we watched her fall into a zone we couldn’t break her out of. Then she actually ate some dinner for me… I had to FEED her which I hope she knows will stop the SECOND we walk into our own house! And she stayed happy+awake while the Palucek girls came by with Jordan… all soccer players again. I think she needed those young girls, most of them her babysitters, to show off for or something. Whatever it was, they worked a magic on her Chris and I couldn’t!

THANKS GIRLS! And a big BLOG SHOUT OUT to Abby and Jordan! HA! (they actually read my boring old blog and want to be on the Fresh Art blog so we’re working on that asap!)

Anyway, the EVEN BETTER NEWS is that her FEVER STAYED DOWN ALL NIGHT! The highest it got was 100.2! Just .2 degrees below what they consider fever!

YAHOO!

When I heard that, around 6am, I practically jumped out of bed and made out with her nurse!

So now Parker’s awake and has taken a few sips of apple juice, Chris ran home to shower and pick up Bailey who’s going to skip school to hang out with us for a while and I’m hoping Bubba gets here soon for his morning visit to let me take a 3 minute shower so when the infectious disease doc comes FINALLY this morning I have a bra on! HA!

My spirits are UP! WAY UP! That we might get to go home this afternoon and at the VERY latest tomorrow morning!

Ahhhhhh. The light at the end of the tunnel is more beautiful than I ever could have imagined!

AND we have our nurse from yesterday, Melissa, who we love!

IT IS GOING TO BE A GOOD DAY PEOPLE!

GO! GO! GO! and have a good day too!

Last week or so when Bailey was at school and the other two were driving me crazy I decided to forget trying to get work done and instead focused on THEM. I’ll never regret the days I focus on my kids.

I stripped them down, mixed some powder tempra paint with water and dish soap, gave them brushes and sent them on the back porch to paint their house+bikes.

They had a blast!

Then when they got bored of painting and wanted to come in (but I was folding laundry at that point and needed a few more minutes to myself) I took their paint and instead gave them a bucket of water and sponges so they could clean!

It totally gave me 10 more minutes so I could finish the load and start a bath before it was time to pick up Bailey at school!

The soap in the paint makes it come off easily with water… this will definitely be something we do as soon as we’re home as a family again!

We’re seeing an Infectious Disease doctor later today and they’re calling the neurologist to see why she doesn’t seem to be making any improvement.  They’ve started her on a second antibiotic to see if that helps kick-start the one she’s been on for 6 days. Her fever spiked again early this morning and there is no reason they can find so far to explain why her fever is not gone… usually it takes about 4 days. We’ve contemplated moving her to Children’s b/c I adore that hospital and know so many people there, but ultimately we feel like we might be starting over if we move and with as sick as she is today we don’t feel comfortable moving her. The nurses have been amazing here (besides the one we had last night) and we can’t complain too much. Our pediatrician has said she’ll support whatever decision we make but she is confident they are doing everything they can here.

So here we sit. Or here I sit b/c C’s two buddies took him out to lunch. And Parker is watching yet another movie. An angel had Imo’s delivered for me so I’ve got my Mnt Dew in hand and although exhausted and frustrated I’m feeling good. AND I just got word another Mnt Dew is on the way from my friend Jen! Now we’re talking! With this caffeine in my system I’m finally feeling like myself again! HA!

My friend Trish asked me to ask for specific prayers so here goes…

1. That the doctors can figure out what is causing the fevers and stop them

2. That she will stop sweating (she started sweating last night and is just constantly wet and uncomfortable)

3. That she will start eating and more importantly, drinking again today

4. That C can stay home again tomorrow and not get docked pay

5. That Bailey and Grayson are good for my mom and weather this storm… I’m worried about them almost as much as I am about Parker

Thanks for the prayers and continued support. I’m not sure I can say that enough.

I’m just done. SOOOO done.

And I’ve started saying fuck a lot. Which is strange because I’ve never been one to curse much. But now fuck has become my favorite word it seems. I’m using it in everyday language to people I never would have dreamed saying it to before. And when i used to hear it it made my heart jump a bit. But now, whatever. Fuck.

And I keep thinking about Sharon. Seven and a half weeks. And Seamus didn’t come home which I KNOW Parker will. All she has is a kidney infection. So when I feel “done” I always think of Sharon and tell myself to SUCK IT UP. Seriously don’t know how she did that.

When I washed my face for bed tonight I noticed my eyes are kind of blood shot. I wonder if I look as tired as I feel?

There is no Mnt Dew in this fucking hospital. None. Well, I honestly have no idea if the vending machines have it b/c I only drink fountain. So the only way to get my FIX is to beg someone to bring it to me. Which makes me feel guilty. But I think I’d be handling this better today if Imo’s was shipping me one every other hour or so.

I’m not hungry. But I’m eating. Because the mom’s worry when I’m not eating. And my dad worries if I’m not drinking enough so he’s brought me Vitamin Waters. Because I dehydrate quickly and end up passing out. That’s happened a lot actually in my life. Which is funny since most of what I drink on a daily basis is soda which is awful for hydrating. So I’m trying not to worry the parent’s even though I never feel like actually eating. And nothing tastes good.

We had so many visitors today it made the day go fast, but Parker had such a bad day I’m wondering if tomorrow it should just be me and her. To give her a rest. But then I think of the endless hours of no break from her and I want to pull my hair out.

I’ve never updated Facebook as often as I have been lately and I’m finding I really do love FB. It is somehow eerily comforting to know my college best friend is praying for my family, or the girl whose house I had my first sleep over in, or the parent’s of C’s soccer players, or our entire church. You have to admit that FB is pretty rad.

This is the fifth night in a row that Chris has slept on the hard concrete floor. He’s so strong. And here for us. I’m going to miss him tomorrow when he goes back to work. I really love that guy.

Parker was not herself today. She was lethargic and tired and feverish and then extremely clammy. I’m going to have a hard time falling asleep tonight because I’m afraid to “leave” her.

I hate this. I hate that EVERY fucking day there is something else they find or something else that’s gone wrong. We keep joking that we need Dr. House but seriously. Aren’t doctors paid the big bucks to know what is going on?

I started a list of everyone we owe thank you cards to and I’m already on page two. This lesson in grace is almost harder than watching Parker be so sick.

I’m worried about Bailey and Gray. Grayson wouldn’t hardly acknowledge me today and I can tell this is really hitting Bails hard. She misses Parker and me and Daddy. She internalizes a lot and has such an empathetic heart. She’s prayed for Parker so much. I know it will all be fine once we’re home but I’m not looking forward to the adjustment period.

The room is dark. C and P are sound asleep. Her little arm elevated with the new IV in her elbow. Her hair soaking wet (her fever broke like 5 hours ago but she’s still sweating a ton, is that normal?) and skin clammy. I’m worried about the fever coming back at 3am like it has every other night. I’m worried about how she’ll wake up. I hate that I think about “good” day or “bad” days now.

I’m ready to have my lively little girl back.

Both Chris and Parker are sound asleep right now so I’m trying to get a few things accomplished on the computer. I’m so afraid client emails are getting lost in the amazing amount of support emails so I’m trying to sift through them. And for all of you sending prayers/notes/encouragement through FB messages or emails please know I will try my best to write everyone back… I’m just overwhelmed right now with the sheer volume of them!

Anyway, the update is…

Her kidney infection is not responding to the antibiotics.

Awesome.

So they took more blood, collected more urine and changed her meds around.

Her fever was back up to 103 this afternoon but now with a giant dose of Motrin in her it’s down to 101.

We’ll be here until at least Friday they’re saying…

I like to document things. Obviously.

For me, I am a visual person so an image will bring back a flood of memories in an instant. Because memories get fuzzy. Especially when you’re under extreme stress.

So every day, at least once, I’ve managed to take an iPhone photo of Parker and looking back, I’m glad I did because she’s so sick right now but SO much better than she was over the weekend and I’ve already forgotten what she looked like just a few days ago.

This is Saturday morning. I took this to text to Tom and Sharon as an explanation of why we couldn’t go to the March of Dimes walk. This was taken maybe 30 minutes or so before her first seizure. And that is right where it happened. She just woke up out of that sound sleep. It literally makes me shudder to see this image because those moments before the ambulance arrived when I couldn’t wake her are absolutely the scariest of my life.

This is Saturday night in the PICU during maybe hour 6 of her 9 hour crying/moaning episode. When we couldn’t console her. When she was drugged beyond belief and starting to experience the side effects of the virus. This was just the worst day of our lives. Period.

Sunday. We were moved to the Pediatric floor and out of the PICU. Chris was lying on the couch, exhausted, during another one of her multiple hour crying bouts. I took this to remind myself how worried he was (he puts his hands on his head when he’s worried) but how strong he was.

Monday morning at 4:30am. They woke her at 4am so she’s be tired for the EEG at 8:30am. She said she wanted to paint (she was high as a kite this day still) so we got creative and gave her my toothbrush and some chocolate pudding! I will save those “paintings” forever I think!

During the EEG. She’s on my lap and the room was totally dark but I had to record her like this. Mainly b/c it kind of freaked me out and also because this was the test that proved Chris and I hadn’t lost our minds, she WAS acting differently and it wasn’t b/c of the medication!

Monday night she was SO “drunk” but at least not screaming anymore which was a HUGE improvement! And all she wanted to eat were “spicy chips”! We rarely have chips at our house so it was totally random that she even asked for something like that! And she ate THREE bags!

Tuesday morning Chris went to school for a while and in the hour before my dad got here she was happy as a clam and still very out of it. We keep calling her “high” or “drunk” because that’s just how she was acting and this was no exception. But for the first time she wanted to get out of bed so I was thrilled with how the day was starting out!

Up and eating breakfast yesterday morning.

Yesterday, post 104.8 fever spike (we had to strip her down to cool her temps) she finally perked up enough to play with her new princesses from GoGo. It was SO good to see her interested and see her fever going back down!

TODAY: Her fever spiked to 102 at 3am which secured us another night here tonight. But then at 6:30am it was down to 99.8 when she woke up so that was good it was going back down. Now, however, at 8:30am I’m getting a bit worried. By this time yesterday she was eating some breakfast, coloring, playful and talking. This morning her eyes look worse (half-mast), she’s not talking and very lethargic. It just feels strange to me and almost like we took a step backwards. Which bothers me. Worries me actually. I’ve told the nurse my concerns and told her that the neurologist wanted to hear about any steps backwards so we’ll see. I just fully expected her to wake up the same because besides the fever, yesterday was an awesome day personality-wise. I’ll keep you posted via Twitter and Facebook of course!

Thanks again for all the prayers and support… my gratitude will end up being a post in and of itself I think!

I’m lying here just thinking.

And I’m sorry if you are reading this and are completely offended by what I’m about to say.

But WHAT THE FUCK?

How in the hell does one kid have a severe kidney infection, an extra ureter, extreme fevers, a-typical febrile seizures and a virus effecting her brain ALL AT THE SAME TIME?

How does this happen to one little girl?

Our nurse joked that this was the perfect storm of crazy illnesses, diagnosis and symptoms but SERIOUSLY! Have you ever heard of such insanity?

I just sit here all day, watching our sick baby girl and wonder how in the hell did we get here? She woke up Saturday morning with a simple fever! I was doing laundry! I had a list a mile long of things to do that day! Chris had the other two at the zoo and they were having a blast when WHAM! SEIZURE! 911! AMBULANCE! ER! PICU! FEVER! VIRUS! INFECTION! BIRTH DEFECT! WTF?

Terri asked me today if I’ve cried. Besides the intense sobbing I did during the 911 call+ambulance ride+multiple seizures I have only let a few tears trickle out. But now I’m just pissed! Why does all this crazy intense stuff always seem to happen to us?

UGH!