We were discharged on Friday!

And without a PIC line!

While waiting for the PIC, Infectious Disease played around with other antibiotics and found a med that Samantha could take orally. We could go home. We could go home without a PIC line. What could be better?

Perhaps a weekend in Vail.

Yep. We packed up out of the hospital, drove home, packed up the car and drove to Vail for the weekend. We already had plans to be in Vail but the million dollar pic-line question was could we make those Vail plans happen?

Where there’s a will, there’s a way.

I packed like a banshee. I threw meds from one bag into another, made sure we had enough oxygen for Samantha, slammed a cup of coffee and tossed the skis in the car.

We were off.

Was this the doctor’s idea of a relaxing weekend at home? Maybe not. But Samantha didn’t care where she was as long as it wasn’t the hospital and someone could cuddle with her at her demand. We spent the weekend with Pops and Nonnie who were happy to cuddle, coo and snuggle with our little patient. As a result, a relaxed Samantha did something she didn’t do the whole week at the hospital.

Samantha slept…and slept….and slept.

And Mama did something she didn’t do the whole week at the hospital.

Mama took in the fresh scent of pine trees, shoosed in the spring snow, howled at at the blue sky and yes….Mama slept too.

This protocol should be mandatory for all discharge instructions.

Happy Easter.

We are waiting to go home. We have been waiting since Wednesday. On Wednesday we found out that Samantha’s infection is sensitive to an I.V. anitbiotic. I.V. antibiotics are not our choice but we can go home on them with a PIC line.

“So let’s do a PIC.” I say on Wednesday.

“We can schedule the PIC for Thursday and you can go home after that.”

Fabulous.

Thursday morning roles around. We have denied poor Samantha breakfast so she’s ready for the procedure…..let’s get things goin’!

“The procedure center is all backed up and they can’t do the PIC until tomorrow.” I am told.

Seriously?

Look at this squirmy, pink child wiggling in the bed. She feels good, it’s time to go. No, we have to wait until tomorrow….another night in the germy, noisy, hospital….until we get a PIC.

Here’s irony for you. Children’s has these yummy coffee machines that will make you a personal latte’ or mocha. They are taking away the foamy milk and chocolate because the little packets cost too much. This makes me sad because I like my personal latte’ but hey, times are tough and I will make my sacrifices.

Until I realized that if we went home yesterday, the hospital would have saved enough money to provide us latte’ deprived families with yummy foamed milk for a year.

It’s the little things in life.

Ridiculous.

Samantha is in because of a new infection. It wasn’t her ear…it was another crazy, nasty UTI.

Bad.

Looking for our silver cloud, we have changed Urologists which I feel very good about. We are deviating from the Children’s system to Presbyterian St. Luke’s for this doctor. I feel a little guilty but hey….they are taking away my foamy milk! We are also going to see the Immunology Clinic at National Jewish. We’re getting serious here.

Good!

Another good is that I now sit on a couple Boards at Children’s Hospital. One met while we were in this week and I was able to express my ‘discontent’ at being held hostage for a PIC line and being re-admitted 48 hours after discharge. These are big deals to the big-wigs at hospitals and I think I made my point heard…..so much so that they are considering some policy changes.

Chiping away to change the world….chippy, chippy, chippy.

Samantha is as cute as a bug. She’s laying next to me playing with her balloons and thanks you all for your good wishes and prayers.

I’ll tell ya. We need a fast-pass admittance into Children’s or something. A little green card that let’s us bypass all the piffle. Piffle is my new word for the day; it basically means crap. If I have to tell another admittance nurse Samantha’s history, that we don’t smoke, we don’t have pets and yes, we do have a telephone at home, I will go absolutely bonkers….bonkers with the copious quantity of piffle.

Where, I ask you, where are the answers to these questions from last week.?

It’s the electronic age. I know it stored somewhere in her file that we don’t have a cat and that we feel quite safe in our home, thank you.

Piffle

Speaking of piffle, it is piffle that we are back on the 8th floor….again. Sweet Cheeks got home from the hospital on Thursday afternoon. We were looking forward to a nice weekend recovering and watching the snow. Friday she wasn’t quite herself. Saturday she woke up after a five hour snooze screaming and writhing in pain. A dose of Motrin and Ativan did nothing. Two hours of trying to comfort an inconsolable Samantha lead us to pack the car and head back down.

Fortunately, we were at Grandma Judi’s and Grandpa Jim’s. The car was packed in two seconds and we had a shorter drive to the hospital. Samantha decided to make the night a little dramatic by holding a 104 fever for a while and really, remaining in quite a lot of pain.

I have to say, Samantha pain is awful. She can go from 100 degrees to 104 in a matter of minutes. Her back arches, she screams, her heart-rate goes up to 160….and stays there. This goes on for hours AND after you have thrown in a gammet of calming, fever, pain reducing drugs.

Piffle.

18 hours later, she is sleeping soundly due to some heavy duty drugs and a couple doses of Vanco. The question now is why did she spike? Do we leave her on Vanco or see if there is another reason why she is sick? And really, when do we get to take a healthy Samantha home? We are putting a care conference together tomorrow to see if we can come up with a plan.

Piffle.

Ick-a-roo….such a nasty bug.

So, it is confirmed that the critter who has taken residence in Sammers ear is MRSA.

That’s the bad news.

The good news is that we think we caught it early enough so that she doesn’t have to have a PIC line and she doesn’t have to go home on I.V. antibiotics….we think….This is good news for many reasons.

1. PIC lines are evasive and direct lines to Samantha’s heart
2. They freak her mother out
3. I.V. antibiotics are administered around the clock so no one sleeps
4. Everyone is happier when they sleep
5. Vanco is a tough antibiotic…hard on the entire system and something you don’t want to become resistant to…the less time on Vanco, the better.

So keep your fingers crossed for oral antibiotics!

On another note, they let us make her formula here in the hospital. This was great because the canned soy nasty RCF is hard on her tummy. She would much rather have coconut milk and Odwalla Super Food. I went out and purchased everything we needed; came back to the hospital and realized that we didn’t have anything to store her formula in. A bottle was too small. The container needed to have a wide-mouth opening to pour all of the ingredients into, a tight seal on the top and a side volume indicator would be helpful too….what to do….what to do.

Ironically, a container typically used for ‘output’ rather than ‘input’ seemed to work perfectly…..a urinal.

We are mixing and storing her formula in a plastic urinal. Hey, it’s sterile, has Samantha’s name on it. NO ONE tries to drink from it. I think I’m onto something 🙂 Call me the Mother of Invention.

There is such a thing as tempting the gods. Talking too much, too soon and with too much self-satisfaction has always seemed to me a sure way to court disaster. The forces of retribution are always listening. They never sleep.
Meg Greenfield

Perhaps it’s because Mama tempted the Gods the last two weeks with her revealing in the sun…shoosing in the snow. Perhaps she did talk too much with too much self-satisfaction. The blame has to fall somewhere and I think it should duely go to the one who had the most fun. Look at those pictures below….she was clearly having the most fun.

We are back again; enjoying the view from the 8th floor at Children’s. Well Mama and Daddy are…I’m taking a much needed snooze.

It looks like that nasty MRSA bug has gotten the best of my ear. This time it switched things up a bit and decided to go for the left instead of the right. Never, ever a dull moment.

Mama and the staff all seem to be behaving themselves and we’re hoping for a short stay.

We’ll keep you posted.

Samantha and her gang

I’m posting ski pics….again.

Because I had a great ski day….again.

I’m not gloating….well I don’t mean to. I’m more giddy….I’m like a crack addict getting her fix…seriously. A good bump run, the sun on my face, the smell of pine…good living. I also got to ski with my husband which doesn’t happen too often unless we can get a condo AND try to convince one of the Grandparents to come up with us AND convince them that the skiing really isn’t that great AND they would be much happier in the condo with two year old.

It’s a long list….with a lot of caveats. It’s a list with a seizure protocol, tube feedings and a cell phone never out of sight. They still do it…I’m pretty darn lucky.

And they’re cute too aren’t they?

And they love Samantha to pieces.

How lucky are we?

So we strapped on our boards and I pretended I was Lindsay Vonn and forgot I was a mom. Yes, I know Lindsay Vonn is decades younger than me but this is my day off. I can pretend to be whoever I want.

My husband and I raced down the mountain like giddy prom dates, like courting polar bears, like flirting kangaroos, like….well we had a good time.

And then we met the babysitters/grandparents for a beer.

I might be gloating a touch.

Freedom is just chaos, with better lighting. ALAN DEAN FOSTER, To the Vanishing Point

What happens when you take three moms with young children, a day out without those children, sun, snow, mountain air and green beer?

It isn’t pretty….

But it’s fun.

Who are those men?

We tried to ski but everything was closed 🙂

You set these ladies free….and it’s chaos…with much better lighting.

These days set me free. These days are good for my soul. These days remind me to embrace my life.

To quote our little Braveheart….”It’s all for nothing if you don’t have freedom”

Go Braveheart, go

So, back in the day, my blender was based on it’s ice-crushing abilities. How quickly can it make my marg a smooth, frothy, lip-smackin beverage? Can it meet these requirements many, many times during a Cinco De Mayo party without smoking, jamming or developing a funky smell?

My needs were simple.

The other day I learned something new.

Wait for this one.

You wouldn’t believe it……

A blender can be used for food.

Ewwwwwww…..

Who in there right mind would want to blend their food?

Me.

Kind of.

When I became pregnant with Samantha, I had dreams of making my own organic baby food. I would be a Whole Foods mama, shifting nervously over fresh veggies, smelling, squeezing, picking, poking. It would be fabulous.

When Samantha had to be tube fed, I put those visions on hold. When Samantha went on the ketogenic diet I resigned myself to the fact her diet would consist of something out of can; pre-made by some nutrition based company in Ohio. I couldn’t possilbly put something together that she could eat everyday. It sounded very complicated.

Oh contraire Mama.

The other day a Kind Canadian Ketogenic Mama sent me a recipe for a homemade ketogenic formula. Viola! Samantha’s new diet now consists of:

Olive Oil
Eggs
Odwalla (Organic!) Superfood
Coconut Milk

Not too bad eh? Especially when you think that a year ago she was drinking partially hydrogenated soybean oil. Whip that up in a blender and we are good to go. Ironically, Samantha isn’t nearly as gaggy as she used be. Hmmmm….maybe she thought partially hydrogenated soybean oil was nasty too.

The best part is that I can now look through the eggs, trying to decide if free-range is better than cage free. I can look for the DHA, omega three enriched, happy eggs from happy chickens and live my Whole Foods Mama dream.

As a side note to this dream, I have decided that Whole Foods is hopelessly overpriced so I’m opting for Vitamin Cottage.

And my blender no longer smells like a frat party.

Life is good.

Yes, once again, I have to take over the blog. Mama is easily distracted. This week she was out gallivanting around…forgetting that her primary job is attending to me, Princess Samantha. She also got obsessed about the second Twilight book, New Moon and read 500 pages in four days. Yeah, Mama says she has it hard but look at these pics….I really don’t feel sorry for her.

Fortunately, I have others who love me dearly and pick up when Mama decides to be a little devilish…..

You thought I was kidding, didn’t you???

She was hangin’ with a rough crowd…..

Fortunately, Grandma Judi came to the rescue! Save me from devil Mama!

Before Mama grew horns, she and Pops went out on the town to celebrate his ’49th’ birthday (you can thank me later Pops!)

They went to an Avs game and Mama yelled obscenities at the Senators.

Where is the baby you may ask? Whose watching Samantha? Nonnie took over so that crazy Mama could have her fun.

Not pictured is Grandpa Jim…carseat mover and oxygen tank-changer extraordinaire.

Thank you…dear Grandparents, for watching over poor, abandon Princess. Mama would thank you too but I think she’s snoozing on the couch. I have to do all the work around here.

🙂

XO-
Princess S.