It has been quite a 24 hours……

We have been struggling with seizure control for the last ten days. Samantha would have a cluster of seizures, we would give her rescue meds, she would sleep for a day or two and then the seizures would come back.

This is no fun for anyone.

So yesterday when the seizures started up again, our neuro and I decided we would take her to the Emergency Room, give her a hefty dose of Dilantin, stop the seizures and go home on a new seizure protocol.

That was the plan.

It was a good plan and it involved us only being at Children’s in the afternoon while we did the I.V. med.

But Samantha’s seizures had a different idea and by 8:00 last night it was clear we wouldn’t be going home. When the seizures continued after two doses of Dilantin, two of Ativan and an EEG, it was clear we would spending the night in the PICU.

So, we hunkered down for the night and I prepared myself for another weekend at Children’s.

BUT, today the seizure activity has calmed down, her heart rate and oxygen levels have remained stable and our trusting neurologist has decided that the best place for Samantha to be is home.

So, we are going home! We have never been discharged directly from the ICU but I am not arguing. We are packing up, tip-toeing out of here and keeping our fingers crossed for a quiet, non-eventful weekend.

Hope you have the same 🙂

Today is my day to post for Hopeful Parents. You can read it here or check me out there!

“How is Samantha?”

I never answer with ‘she is good’ or ‘she is sick’, I always preface my response with ‘today she is good’, ‘we’re having a rough time of it today’.

Because our life changes like the direction of the wind, what is comfortable one day is painful the next. A protocol that works like a charm one week just might not work once we hit Monday.

We have no control.

This variable lifestyle has made me a tad nutty.

And a bit superstitious.

I knock on wood. Seriously, if something is going well for Samantha I will say, “Well we have seizure control today, knock on wood.”

If wood is not available to me from where I am, I will stop the conversation, I will get up, find a door, or a cabinet, any piece of wood and knock on it. If I can’t get to wood, because I’m holding Samantha or caring for her, I will tell the person I’m conversing with to knock on wood.

And I’m serious….knock on wood.

When Samantha was in PICU, a friend dropped off her son’s lucky blanket that he had in the PICU. Another friend brought in a stuffed monster, because her son has monsters for good luck. We have crosses, angels, messages, stuffed animals, prayers, amulets, charms and lots of wood knocking.

We live in a world that tries to control so much. We know the weather five days in advance. We flip a switch and we have light, heat, cool air, water….

But when it comes to our children and their illnesses, we really don’t have a whole lot of control. Their little bodies are calling the shots.

So, like our ancestors, who didn’t have 24/7 radar weather, who looked to the horizon and asked I wonder what today will hold? Will it be calm? Will there be a storm? Will my crops survive? Perhaps we need a rain dance. We too approach each day looking to the horizon, wondering if we need to prepare for the next storm. Wondering what amount of knocking on wood, lucky blankets and monsters will help our precious little Peanuts make it through another day or at least make us feel better, feel as though we have some tiny element of control.

And yes, I have made up own anti-seizure dance, while of course, tapping on some poor piece of maple.

What is your superstitious ‘thing’? What do you do for an element of control?

This is our new addition to the household….

I find it quite Williams Sonomaish, don’t you?

This is Samantha’s home pulse oximeter. The top line is her oxygen saturation (100% is great!) the bottom line is her heart rate. 128 is a little high but not too bad. Overall, I am happy with these stats.

This machine is a little chirpy but after a while, I hardly notice it.

Samantha has had a tough two days. We’ve had seizures that have been a bear to control. After talking to Children’s Neurology and tossing some really good anti-epileptic drugs at her, it is really, really reassuring to hook her up to the pulse-ox and know that her heart rate is stable, she can maintain her oxygen levels and she is not completely snowed by these meds.

This information can keep us out of the emergency room and helps the doctors we talk to make better decisions about the next course of action. This all makes our new little friend a very lovely, very dependable, little friend.

Speaking of the emergency room, our little friends have also had a tough week. Monster Max , Cici and Jacob will be visiting Children’s tomorrow for various reasons. In the words of Max’s Daddy……

“You ladies need to find a new place to party!”

Agreed. We are hoping to miss this party but will have our dear friends in mind. Please send them all a little prayer or good thought…..heck, chicken feathers are good too 🙂

To an uneventful night for all……

Happy Birthday to the one who keeps me sane…

To the one who I can say every awful thought in my head and who never judges me…

Happy Birthday to the one….who when talking about Samantha tonight, says “She just amuses the heck out of me. Life without her would be boring.”

Here’s to never, ever, being boring…..

Here’s to the man strong enough to be my man…..it’s not easy being my confidant…

And to the man strong enough to be Samantha’s Dad.

Love you hubbie

Happy Birthday

No celebration is complete without wine 🙂

And presents

And cuddles….

“It is a wise father that knows his own child,” William Shakespeare.

Amen Willie

Mama feels bad for not posting this very important news….

We are home!!!!!

We got home last night. I am again on IV fluids and slowly moving up to full-strength feeds. I’m quite a congested pumpkin, requiring Mama to suction out my chest. BUT we are doing this all at home.

This last visit wore Mama out. We got home, met with our nurses, heated up a pizza and that was it….good night Mama.

Being the type of girl who likes to share, I gave Daddy my virus. He is feeling rotten. This makes Mama unhappy because Daddy won’t kiss her. Apparently HE doesn’t feel the need to share.

No kisses for Mama!

That’s okay…..I’m keeping her too busy for kisses.

Thank you again for all of my well-wishes. I am a very lucky little girl to be so loved.

XO–
Samantha

When Samantha first became sick, a friend of mine gave me a copy of Welcome to Holland. I thought it was fabulous, poignant and I felt like I had landed in Holland. I have become used to Holland, comfortable perhaps with what might seem out of the ordinary to a tourist. What others might gawk at, I have learned to embrace because it is our life. I even love my wooden shoes.

After this week however, I have learned that there is a place more foreign than Holland. Sometimes just being in another country does not do the craziness justice. It it not just getting used to another language, it is another solar system, another galaxy. Touring a canal does not address the drama, the slime, the anxiety, it does not address the question that keeps popping up in my mind…...what messed up planet have we landed on?

Lately I’ve started to feel a bit like Greg….the Alien….

http://www.hulu.com/embed/bJuAhLWsJlQ4QEdYYBhhXw

Notice the tail….

I have given this look several times in the last week….

I now communicate in clicks and squeals.

The question is….am I the invader or the invadee? I can’t decide.

The good news is Samantha is getting better. The influenza that has settled in her lungs is starting to break up. As a result, she is pretty congested and we are suctioning her quite a lot….nothing we don’t think we can’t handle at home. She also started her feeds yesterday. If she can tolerate the formula, we’ll be able to go home.

Hopefully tomorrow we will be beamed off this crazy planet.

Which is good….my alien tail needs to be trimmed.

Beam us up Scotty.

Hello Friends!

I wanted to let you know how your well wishes have decorated my door. It makes everyone feel good when they enter my room.

Thank you!

If you would like to send a cheer card and be featured on the 807 door, click here

Love and slobbery kisses:

Samantha

A day is 24 hours…..

1440 minutes…..

86,400 seconds…..

A lot can happen in 86,400 seconds. Oxygen levels can regulate on their own, heart rates can become consistent, lipase levels can decrease, temps can drop to normal…..even a mama can find her ‘kool‘ again.

That’s right we’re kool….and hangin‘ on the 8th floor.

Chillin like a villain.

In 86,400 seconds Samantha can go from being in the PICU to hearing tiny utterances of a discharge plan.

The discharge plan is slow….

Days slow….but it is out there.

Slow and steady wins the race…..

You can call me Turtle.