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.

I wanted to say I hate the PICU….

But I don’t really. I just hate the fact we’re here. The PICU stands for the Pediatric Intensive Care Unit…..reserved for really sick kids.

The doors are all sliding glass so the nurse can observe kids 24 hours a day. We are at one end of the PICU, the bathroom is at the other end….so, if you have to pee, you have to walk past 12 rooms of sick kids.

12 rooms….

I try to ‘hold it’ so I don’t even have to walk past 12 rooms. If I do, I try not to look in…..ugh…. kiddos hooked up to five different machines, parents with that ‘lost’ look in their eyes….

if you gotta be here, you gotta be here but yeah, the PICU sucks.

We are here tonight because Samantha crashed while being sedated for her MRI. When the anesthesiologist started her ‘cocktail’ of meds, her heartbeat became irregular and her oxygen stats dropped to 60% .

The doctor immediately stopped the sedation process. Samantha woke up on the way back to the recovery room with a doozy of a seizure.

Big seizure + irregular heartbeat + dropped stats = PICU

She looks better tonight and is resting comfortably. We have no results from the MRI because it just didn’t happen.

Her belly remains a mystery.

I’m okay with that.

Hoping to be back on 8 tomorrow.

Send Samantha a cheer card here 🙂

Therefore I am heading off to my hospital cot.

Samantha is hanging in there. She is one tough little pickle. She has a lower respiratory infection which explains her low grade temps and possibly her seizures. The infection has also created excess fluid in her heart and lungs so we are also being followed by cardiology.

Abdominal MRI tomorrow to look for reasons for her pancreatitis.

She looked gray and sick today but pinked up this evening. She is currently sleeping….

Mama is hoping to be sleeping soon.

Thank you for all of your thoughts and prayers. If you would like send Samantha a cheer card, you can do it here.

xoxoxoxoxoxo…….zzzzzzzzzzzzz