Day eight in the hospital hasn’t brought us any closer to a resolution….we thought it did but the last 24 hours have been a little trying, to say the least.

We were scheduled to go home today. I was a little aprehensive. IV meds have not decreased the infection, we switched to an oral antibiotic and Samantha was still having seizures. I am such a Nervous Nellie! (sarcasm intended). But, they thought we could handle it.

Samantha, in her wonderful way of telling us what she needs, continued to have seizures and a bad night last night. She is now running a slight fever and was clearly in pain until we gave her a dose of Ativan. Yep, we’re here for the night. Apparently Samantha didn’t feel comfortable going home either.

We are also dealing with the fact that 8 days of Vancomyacin (sp) has not cleared up her ear. The doctors are now considering surgery; going in and scraping the infection out of her canal. This is a 2-2 1/2 hour procedure that everyone is a little nervous about considering Samantha’s condition.

Our nerves are a little frayed. We just want this nasty infection gone….gone, gone, gone. I’ll continue to keep you updated.

Please keep little Sammers in your thoughts and prayers.

Love,
Heather, Bart and Samantha

What does Tom Brady of the New England Patriots and Samantha Schichtel of Loveland, Colorado have in common?

They both have MRSA. And we think they both contracted it from a hospital procedure. Tom from his knee, Samantha from her ear tubes. It’s pretty serious stuff. I guess now in the US, more people die from MRSA than from AIDS and if uber-athlete Tom Brady can get it….

So we’re treating a super-infection with super antibiotics. She has been on IV meds for a week and we will switch to oral meds tonight. The biggest issue is that the drainage in her ear isn’t going away so we’re still fighting something in there. We will continue to follow up with the Ear, Nose and Throat docs.

The big news is that we are scheduled to GO HOME TOMORROW!!!! Keep your fingers crossed. I’ll let you all know how the next 24 hours go.

Thank you for all of the well-wishes and good thoughts.

Love,
Heather, Bart and Samantha

Samantha now has a PICC line. It’s a catheter that runs up to the entrance of her superior vena cava down her arm and out like the tip of an IV line. When your getting a lot of IV meds and blood draws, it kind of makes sense. They can just come up to the line and put in or pull out what they need. Her little veins were dry and the bottom of her feet have been ravaged due to pokes. It’s unnerving to think that that this line runs all the way up to her heart….CRAZY! Since we have the line in, the specialist have made a ‘wish-list’ of the blood tests that need to be run while were here. I’m going to buy a bunch of vampire fangs and start handing them out.

Each day is getting better. We usually have a couple periods of high temps and agitation but nothing too long. Everything is kind of on hold for the weekend and we will reconvene with the specialists on Monday.

Bart came down last night and we are spending a lovely weekend together as a family on the 8th floor. I’m catching up on my Disney flicks.

Hope you all are well!

Us

So, when you’ve spent WEEKS in Children’s, you learn the ins and outs. You learn that it really is ok to question the docs, disagree with protocol and push back.

I’ve been pushing back.

Nothing extreme….I’ve insisted we get Infectious Disease involved. I make lists and ask for follow up…we’re running the business of getting Samantha well. Yesterday however, one of the I.D. residents mentioned to the nurse that she was afraid to talk to me about a delayed meeting for fear she would get yelled at.Yelled at?!! I’m not a yeller…a little short perhaps….it’s all about the business of Samantha 🙂

Speaking of, we are now on the 8th floor; out of the ICU. YAY! They are thinking Samantha had a super-infection behind her ear. She also tested positive for MRSA which is a nasty staph infection. All is being treated with a super-dose of anti-biotics. We will be here at least through Monday.

Samantha is resting well. She’s pretty worn out from days of high fever and intense pain. We both slept well last night!

Thank you again for all the well-wishes, thoughts and prayers. We love you guys 🙂

So, we almost made it a year without any unplanned hospital stays…..

We’re at Children’s this week. Samantha is fighting an infection but we haven’t been able to find the source. She’s been in a lot of pain and spent yesterday with a 104 degree fever. Last night took us from our ‘penthouse’ on the 8th floor down to the ICU so she could be closely observed as her stats started to drop.

We are keeping our fingers crossed that the worst is over. She’s on two I.V. antibiotics that seem to be controlling the infection and her vitals look good. She’s now sleeping and has her pink hue back 🙂 Thankfully, she went through this without any breakthrough seizures.

We’re hoping to be home by Friday. I’ll be updating my blog with any news. If you have a moment, send her a smooch.

Thanks, as always, for the support 🙂

Love,
Heather, Bart and Samantha

I got third in a writer’s contest! I get a $25 gift certificate and to sit with the author at our writer’s lunch. Free lunch! Whoo hoo! The rules of the contest were….you had to invent your own fad, it could be no more than 250 words, and you had to incorporate the following words: bellwether, flip and serendipity. Here’s the final result….

Susan met John at the door wearing donkey ears. “Welcome to the bellwether of political events!” She said.

“Thanks but remind me why I’m here? I like to keep my political views private.”

Susan rolled her eyes. “We’re in the wireless age, Honey. Nothing’s private.”

They walked into a gutted office building. Professionals stood in workout gear,
drinking beer and conversing. It looked like a typical gathering except for one odd fashion accessory. Everyone wore elephant or donkey ears.

A whistle blew and the referee called out. “Okay, grab your mud balls and go to your assigned sides. We’ll start slinging in two minutes.”

Susan rummaged through the mud balls. Each ball had a tag naming different political
issues; economy, Iraq, global warming. She took out oil dependence and juggled it
between her hands. “Are you going to take a side?” She asked John.

“I’m independent. Can I take you all on?”

The whistle rang. Susan turned with a flip of her donkey ears and hurled a mud ball
labeled Health Care.

“Hey Susan!” An elephant eared man called out and lobbed a gooey orb.

“What? Oh, ouch! I’ve been struck by Foreign Policy.” She wiped the sticky mud across her forehead and sat down by John.

“Physical political mud slinging?” he asked.

“We all have political angst. We have to get our aggression out somehow. It’s dirty but good fun.” She picked up a ball. “Ah, sweet serendipity; this is a good one, lipstick. I’ll be back”

Rub a Dub Dub….I like the Hot Tub….I think

Pops shoulder and a hot tub…life is good!

I’m Queen of the World!

My Mother is a Floating Head

So it’s an interesting thing….after these pictures were taken, Samantha had a week of seizures that were really hard to control. We ended up in the emergency room the next Saturday. You can kind of tell that she’s not on her ‘A’ game but she’s still hanging in there. She’s a tough little fishie!

Hi All:

So I didn’t win this writing contest….wasn’t even a runne-up darn it! We had 24 hours to turn around a story. The theme of the story had to circle around a woman walking into a toy store, picking out an item and being told that item was not for sale….this is what I came up with….

Easy-Bake Beauty

Angela turned away in shock and anger. How dare she? I’ve been eyeing this for months. Who does she thinks she is? Angela looked down at the counter where the coveted Easy-Bake Oven used to be and then up at the owner who enveloped the toy within her cheesy arms. She cleared her throat. “Ahem, I see. Well thank you.”

Angela stepped outside into the sweltering heat of the city. To make matters worse, the anxiety of the situation triggered a hot-flash. She could feel drops of sweat pool between her bra and in the creases of her panty hose. She ducked into an alley way, cursing. In desperation she pulled off her hose and deposited them in trash can. She breathed a sigh of relief. Better.

Off Broadway in a cheeky French restaurant, Angela met her best friend, Rebecca over a glass of wine.

“Where’s the Easy-Bake?” Rebecca said. “I’ve been looking forward to this trip down memory lane!”

“She wouldn’t let me have it,” Angela shook her head. “It was odd. I’ve been collecting toys for years and I’ve never seen anyone so attached. She would have gone after me if I tried anything funny. It’s only an oven.”

“Maybe it makes really, really good cookies.”

“Oh, I’m so sad! I scoped it out for weeks. Original, first produced 1963 Easy-Bake Oven….in turquoise. God, I’m hot in here. Waiter! Can I get a glass of water?”

Angela couldn’t get the encounter at the toy store out of her head. Later that afternoon, she decided to pay another visit to the owner. She stopped off at the bank and withdrew more cash. Playing a little hard ball.

Angela peeked in the window looking for the shopkeeper. Afternoon light streamed through the dusty windows. She could make out vintage toys from childhoods past but no sign of the owner. Angela quietly squeezed through the door trying not to ring the bell. She was greeted with enticing, scents of vanilla and sugar…mmmmm…..cookies but not any just any cookies, Easy-Bake Oven cookies. Angela closed her eyes and was taken back to a time of bobby socks and print skirts, pigtails, Barbie dolls and tea parties.

She tip-toed towards the back where the smell was getting stronger. The owner was in the bathroom hunched over the Easy-Bake Oven. What is she doing? The smell of cookies was almost overwhelming. Angela stepped closer. The shopkeeper’s head was practically stuck inside the oven.

“What are you doing??!!!” Angela cried out.

“What? Who’s there?” The owner pulled her head out of the oven. “Oh hello dear, weren’t you just here this morning?” Her face was covered with cookie batter dripping off her chin and nose.

Angela stood there stunned.

“Let me wash my face, I must look a mess. I can only imagine what you’re thinking. What is that crazy lady doing with her head in the Easy-Bake Oven? Oh, just fixing a little odds and ends. These older toys never work quite right. Let’s move to the front of the store, shall we?”

Angela couldn’t believe her eyes. The shopkeeper looked twenty years younger. Her crow’s feet were gone, the wrinkles around her mouth had disappeared and her skin had tightened up. “The Easy-Bake Oven did this?”

“What? Oh no, don’t be silly.”

Angela looked at her suspiciously. “Something’s going on here. There’s nothing worse than a shady toy store.”

The shopkeeper sighed and wiped the remaining batter off her nose. “The Easy-Bake Oven did this; just the very first 1963 model. I think it’s something about the light bulb and the old cookie batter. To be honest, I’ve never felt better.”

“Does it work for hot flashes too?” Angela asked.

“Like a dream. The Easy-Bake seems to reverse any consequences of aging. I found twenty minutes with the sugar-cookie recipe works the best. I stay away from the carrot cake. I find it makes me too orangey. So you see dear, I can’t sell you my Easy-Bake.”

“You didn’t look this good this morning.” Angela said skeptically.

“I couldn’t find the oven for a week! Someone hid it in the store. When you brought it up to the counter, I was so relieved. I had to sneak in a beauty treatment this afternoon. Easy-Bake magic is only temporary.”

Angela dug into her purse looking for the cash she brought. “You have to sell me this oven! I don’t care the cost. Menopause is killing me; hot flashes, sleepless nights, wrinkles….please….or just let me stick my head in the Easy-Bake…just for a minute or two.”

“No, it would be too cruel. Once you’ve had it, you would want more and I can’t give you mine. No dear, you will have to find your own beauty treatment.”

Angela left the store feeling sad, forlorn and fighting another hot flash; damm that woman her and her Easy-Bake Oven.

Two years later, an older woman walked into a dusty old toy store. Ahh, there it is. I’ve been looking for ages; the 1963 Easy-Bake Oven in turquoise. She proudly carried her new find up to the cash register. “Ma’am? I would like to take this.”

Angela turned from behind the register. She smiled a flawless, wrinkle free grin. “Oh no, no, no, I’m very sorry,” Angela grabbed the box. “This item is not for sale.”

Easy Bake Beauty
Submitted: July 27, 2008
Heather Simms-Schichtel
heather.schichtel@gmail.com

Hi All!

I will post about the week later today….all is well!!! But I have been struggling with the release of Tropic Thunder and how to ‘keep my sense of humor’. I think Timothy Shriver does a good job of relaying my thoughts. 🙂

Timothy Shriver, Chairman of Special Olympics, has an op-ed piece on
“Tropic Thunder” in the Washington Post (read below).

By Timothy Shriver
Monday, August 11, 2008; A15

I’ve been told to keep my sense of humor about the film “Tropic
Thunder,” which opens this week. Despite my requests, I have not been given the
chance to see the movie. But I’ve seen previews, read about it and read
excerpts of the script. By all accounts, it is an unchecked assault on the
humanity of people with intellectual disabilities — an affront to dignity, hope
and respect.

Consider this exchange:

Ben Stiller’s character: “There were times when I was doing Jack when I
actually felt retarded. Like really retarded.”

Robert Downey Jr.’s character: “Oh yeah. Damn.”

Stiller: “In a weird way, I had to sort of just free myself up to
believe that it was okay to be stupid or dumb.”

Downey: “To be a moron.”

Stiller: “Yeah.”

At another point, about acting like a person with intellectual
disabilities, they say:

Stiller: “It’s what we do, right?”

Downey: “Everybody knows you never do a full retard.”

Stiller: “What do you mean?”

Downey: “Check it out. Dustin Hoffman, ‘Rain Man,’ look retarded, act
retarded, not retarded. Count toothpicks to your cards. Autistic,
sure. Not retarded. You know Tom Hanks, ‘Forrest Gump.’ Slow, yes. Retarded,
maybe. Braces on his legs. But he charmed the pants off Nixon and won a ping-
pong competition. That ain’t retarded. You went full retard, man. Never go
full retard.”

I worked with the Farrelly brothers on a film on this topic. I know
about edgy comedy. I’m also told that movies are equal-opportunity offenders.

So here’s an equal-opportunity response to the equal-opportunity
offenders:

People with intellectual disabilities are routinely abused, neglected,
insulted, institutionalized and even killed around the world. Their
parents are told to give up, that their children are worthless. Schools turn
them away. Doctors refuse to treat them. Employers won’t hire them. None of
this is funny.

For centuries, they have been the exception to the most basic spiritual
principle: that we are each equal in spirit, capable of reflecting the
goodness of the divine, carriers of love. But not people with
intellectual disabilities. What’s a word commonly applied to them? Hopeless.

Let’s consider where we are in 2008. Our politics are about overcoming
division, our social movements are about ending intolerance, our great
philanthropists promote ending poverty and disease among the world’s
poor. Are people with intellectual disabilities included in the mainstream of
these movements? For the most part, no.

Why? Because they’re different. Their joy doesn’t fit on magazine
covers. Their spirituality doesn’t come in self-help television. Their kind of
wealth doesn’t command political attention. (The best of the spirit never
does.)

Sadly, they’re such an easy target that many people don’t realize whom
they are making fun of when they use the word “retard.” Most people just
think it’s funny. “Stupid, idiot, moron, retard.” Ha, ha, ha.

I know: I could be too sensitive. But I was taught that mean isn’t
funny. And I’ve been to institutions where people with intellectual disabilities
are tied to beds or lie on concrete floors, forgotten. I’ve heard doctors say
they won’t treat them. I know Gallup found that more than 60 percent of
Americans don’t want a person with an intellectual disability at their child’s
school.

I’ve talked to people with intellectual disabilities who cry over being
insulted on a bus. I’ve received too many e-mails from people who are
devastated not by their child’s disability but by the terror of being
laughed at, excluded and economically devastated.

It wasn’t funny when Hollywood humiliated African Americans for a
generation. It’s never funny when good and decent human beings are humiliated. In
fact, it is dangerous and disgusting.

This film is all that and more. DreamWorks went so far as to create a
mini-version of Simple Jack and posted it online. The studio has since
pulled it down, realizing it had gone too far, even in an age of edgy, R-
rated comedies.

So, enough. Stop the hurtful jokes. Talk to your children about
language that is bullying and mean. Ask your friends, your educators, your religious
leaders to help us to end the stubborn myth that people with intellectual
disabilities are hopeless. Ask Hollywood to get on the right side of dignity.

I hope others will join me in shutting this movie out of our lives and
our pocketbooks. We don’t live in times when labeling and humiliating
others is funny. And we should send that message far and wide.

The writer is chairman of Special Olympics and a columnist for
washingtonpost. com’s On Faith discussion site.

The oncology nurse, Nurse John came down to get us. He was a big, burly man who handled Sarah with delicate hands. I chuckled to myself as he carefully lifted our tiny daughter. His biceps were decorated with tattoos. He looked like he should be watching the door at a biker bar instead of wearing Thomas the Train scrubs. He reached down to get Sarah and held her as though she were made of porcelain.

“Let’s get you upstairs and settled.” He cooed to Sarah.

We followed him up to the 5th floor, listening to him in our catatonic state. There was a huge STOP sign on the door to the ward.

“This is a clean floor.” Nurse John said. “The kids up here have such compromised immune systems we really have to be careful. No colds, no other siblings and you can’t use the bathroom in the room; it’s shared with the kid next door and we can’t contaminate it with anything.” He handed us a sheet of paper explaining the 5th floor protocol. I felt filthy, germy and infectious.

I always wondered what went on behind those doors with the big red stop sign. Drama, I thought, doctors running through the halls, children screaming behind closed doors. Instead, it was very quiet and very clean. Doors were decorated with bright get well cards and big signs as to whose room it is….Welcome to Ashley’s room, Nathan’s room…it hit me, kids are here for a while.

We walked in our room and laid Sarah down in the crib. The front bars of the crib were down since they needed to treat her and there was no fear of her rolling. Sarah used to roll; but not today. The hospital crib looked like a baby jail. The bars were metal and made a loud clanging sound when locked into place. She looked so small in this big metal cage. I wanted to crawl in with her and cuddle.

I tried to schooch in next to her. “Will the crib hold me?” I asked, trying to sneak a hip up on the mattress.

“Hmmm, probably not,” Nurse John said.

I got off the bed and wandered aimlessly around the room biting my cuticles, trying to think of someway to feel useful.

“Can we feed her?” my husband asked

“Sure, let me get you some formula, we’ll see how she tolerates it.”

Finally! I thought. Some sense of normalcy…feeding the baby; all normal, healthy babies eat. Sarah was going to be just fine.

Nurse John brought in a couple bottles of soy formula.

“She takes milk based formula.” I said.

“Why don’t you give this a try. Soy is easier on sick kids tummies. We use it around here all the time.”

I glanced over at my husband. We had asked our pediatrician about switching to soy months ago due to her reflux. “No, no” he assured, “milk protein is the best. We don’t need to switch her.”

Stupid, stupid, stupid, my husband and I had talked after our doctor’s visit about concerns we had with our pediatrician. We decided to stay with him until Sarah’s six month appointment. I felt that we had lost precious time listening to a doctor who dispensed flippant information. Maybe if we had switched to soy we wouldn’t be here, I thought.. I took the formula, gently cradled my daughter and started to feed her. Sarah seemed to wake up a bit. She took the nipple and slowly began to eat. I breathed a sigh of relief. At least I can still feed her.

Sarah drank two ounces and seemed pretty content. She looked directly at me as her body tensed and gave a loud farting sound. Bill, Nurse John and I looked at each other and started to laugh. Sarah gave a slight, relieved smile.

I looked down at my jeans and saw that Sarah’s little noise left me covered in yellow baby poo. “I could be wearing these clothes for a while.” I thought. I set Sarah down, cleaned her up and then cleaned my jeans off. Funny, a couple of days ago I would have been a little disgusted by being coated in poo, now it was just part of the day.

I remember reading a book when I was a teenager about a 19 year-old boy who had leukemia. His mom was donating blood one day when she noticed the woman by her side had poo on her crisp, white pants. When she pointed it out to the woman she said “honey, when you’re in the leukemia ward, your life is covered with shit.”