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

“You have a block,” My acupuncturist said.

“Of course I do. Don’t touch it. That dam was made with blood, sweat and tears. Please don’t unblock me. God only knows what will happen if we unclog four years of emotional schmegma. I could be rendered useless for the next 100 years.”

Seriously, useless……100 years.

But sometimes my emotional dam breaks. It’s necessary but I have to tell you, it ain’t pretty. It usually involves a copious amount of carefully selected curse words; words reserved just for hubby, a venti coffee or large glass of wine (depending on the time of day, I do have my limits, sometimes) and a self-imposed time-out.

Time-outs at the hospital are hard, walls are thin. Nurses give you the sad, worried look. There is no place to go, scream, cry, sweat-it-out. I keep pushing for a workout room…..with sound proof walls and several very large punching bags.

Today, after seizures, a lipase number of 5,000 (meaning she’s back on I.V. fluids only) AND a low grade fever, I shuffled my emotionally unstable hiney out of the hospital and into Malibu, where I promptly lost it.

I listened to Pink, as loud as she could go, ordered the biggest Starbucks I could find and drove.

Did you ever see 101 Dalmations? Remember Cruella Deville? I think I looked a bit like her, hair askew, red eyes, knobby knees, just a tad crazy…..

I finally found myself on I-70, hanging at the Conoco in Dumont. You can get a decent coffee there for a nickel.

A nickel I tell you.

Perhaps it was the 40 ounces of coffee I drank, or just maybe, maybe because Lil Miss is having a tough month…….

But the dam broke. I unblocked…..spewed my emotional vomit right next to the big Sams Club Semi. Semi’s are a good place to loose it because the engines are really loud. No one can hear the expletives.

I now flow a little easier and feel much better….about 400 pounds lighter.

How do you loose it? Self-imposed time-out? Let me know, I need some hospital reading 🙂

I am not a fan of seizures.

And I have forgotten what it’s like to have a child with uncontrolled seizures because for 2 1/2 years we had good seizure control on the diet.

Bettter-than-I-thought seizure control…..

Now we don’t really have good control and I miss it.

Alas, time to tweak another med.

Samantha had a good two weeks. Her lipase has been out-of-control, through the roof high but she has been in good spirits. So, we have been in good spirits.

But today, in the midst of a crazy rainstorm and bumper to bumper traffic on I-25, she had a seizure, and another seizure, and another. I pulled off to give her rescue med but it was like throwing a glass of water at a burning house.

Poop.

When your rescue med doesn’t work, it’s time to call in the professionals. So I did. We were told to turn back around and head to Children’s

So we did, and proceeded to battle bumper-to-bumper traffic going South.

I swear, families who have seizures should have a little siren on top of their car to get them through crazy traffic.

I would only use my little siren during seizure times.

I promise.

Upon arriving at Children’s we found out Samantha had a temp. Possibly the reason for the seizures? Who knows.

We do know we’re camping out on floor #8 tonight. Hoping for a quick stay.

XO-
Us

I am very fortunate to be surrounded by smart, worldly people.

A couple years ago, my friend Deana realized her son Max LOVED the opera. Max’s diagnosis is different than Samantha’s but many issues are similar. As a smart mom of one of our kiddos, she knew she needed to foster Max’s love and excitement for this music. So she contacted Opera Colorado and arranged special live performances for Max and his buddies.

Yesterday they performed the Music Shop at Children’s Hospital. It was fabulous. It was Samantha’s first opera and she loved it.

Loved it. She was engaged, watched the characters and moved her hands around. When the soprano hit a high note, Samantha’s eyes would get wide, she would arch her back and sigh. I personally think she was happy that someone was singing to her….

Someone who knew all the words to the song and could carry a tune.

You all remember my sad version of Polly Wally Doodle (is that the name of the song?)

The cast members were wonderful and visited with us after the performance. Samantha kept a hold of the velvet gloves and thought mink coat was a very nice place to bury her little nose.

It is wonderful, thrilling, to find something that our kids enjoy and connect with. I am also thrilled to have a friend like Deana who listens to opera. I would have never known Samantha had such a strong connection to this type of music…..

Because sadly, I’m not a La Boheme type of girl.

BUT after this experience, I will put down the Lady Gaga and pick up The Marriage of Fiagro.

Thank you Deana, Max, Opera Colorado and Samantha for putting a little culture in this Mama’s life 🙂

Special thanks to Deana to taking these pics.

Samantha and the Music Shop Cast

Chatting with the stars. Deana and Max are to the right of us. Thanks for a lovely experience!

My friend Heidi lost her friend Cat today to breast cancer.

I never knew Cat.

But Heidi and I would talk about her and what she was going through. A couple weeks ago she sent me Cat’s Caringbridge site so I could follow her story. I was so touched by her story, her strength and her beauty.

Perhaps it was the stressful eight hours we spent at Children’s today….

Perhaps I had become a bit of a voyeur on their website……

When I found out this evening that Cat had lost her battle with cancer, I lost it.

I found myself leaving Heidi a message and not being able to complete a sentence….I was sobbing.

I never knew Cat.

But I knew she was a mom. I knew my friend loved her. I knew from her Caringbridge posts that her new husband loved her.

She was 36.

And it felt good to cry for her. I think sometimes we get caught up in seems appropriate. How we should mourn for what we don’t understand. How we should grieve for what doesn’t seem fair or what doesn’t seem right.

Shouldda, wouldda, for this one there is no rule book. Death just sucks.

This is a day late (and as always I’m a dollar short 🙂

We had a great Mother’s Day. We were at home. I went on two bike rides. I was showered with gifts and two types of pie. And we had a wonderful lunch on the patio with my mom, stepdad, brother and my ‘sister’ (my SIL but my sister).

Lovely. But like any holiday, it’s a little different with a kiddo like Samantha. I would like nothing more than for her to wake me up at 6:00 with a bowl full of soggy Cheerios announcing that I am getting breakfast in bed.

I am also recovering from my hospital funk. Hospital funk is the ‘down’ you feel after too many days of sleeping to little, too much stimulation and too much adrenaline. I always takes me a week or two to get my home routine going again.

So, where to go with my Mother’s Day post? Blah.

And then it hit me.

Mother’s Day is not about me. It’s about the people who mother me.

So here’s a word….to my Mother’s

Here’s to our Base Camp. You know who you are. Here’s to Mom, Dad, Cynde, Jim; the fabulous four who drop everything when we’re on the 8th floor to feed and clothe us; make sure we get out. They ask questions, provide another point of view, give support and love our family. If you’re climbing Everest, make sure you have this base camp. They will sustain your body and spirit as well as shower you with Spicy Pickle sandwiches and the best pot roast ever.

Is there anything better?

We have our ‘hospital mom’. Our Dr. E who looks after all of us as if we were her own. I have not seen it, but I have a suspicion that she will take on a team of doctors with Mama Bear fierceness when Samantha’s care is in question. I adore this woman.

Moms who I knew as moms growing up. They look after me as if I was their own child; sending meals, goodies, notes about my own welfare.

My friend moms, who are balancing their own busy life; have their own families. You who schedule time in to visit the hospital, bring sandwiches, meals, frog pins, People magazines, cards, bamboo plants for good luck, make signs, bring balloons, zen mix, cookies, fruit, call, email, drive 50 miles in a rain storm to meet me for dinner.

And to my women who say ‘Well it may be Mother’s Day but I’m not a mom.’ HA! You have protected and provided for us….mothered me with a shoulder to cry on, a glass of wine, the best brownies the world, quilts, cookie baskets, flowers from other countries……

You know who you all are. My band of mommies making sure I stay honest and somewhat sane.

You’re doing a great job….I can be a somewhat unruly child 🙂

Happy, happy, happy Mother’s Day….