Tag Archives: Hospitals

Prayers for Sarah Jane

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I’m sharing this story in the hope you will read it and find room in your heart to pray for a special little girl that needs a lot of love and support right now.

My son has a half-sister, Sarah Jane.  She is eight years old with blond hair and the longest lashes in the world that frame her pretty blue eyes.  As you will see, Sarah has an amazing smile.  She’s a sweetheart and our family loves her more than words can say.

Matt's sister Sarah Jane, age 2

Matt's sister Sarah Jane, age 2

Sarah was diagnosed with epilepsy at a very early age, after what seemed like an unrelenting round of seizures.  Despite the medication side effects and slight developmental delays, Sarah loved to play and dance and sing … all the things that little girls do.  Just before her 3rd birthday, Sarah had a very bad seizure that lasted over 5 hours.  The doctors put her in a drug-induced coma in the hope that this seizure would stop and her brain would have time to rest.

When she was physically stable long enough to wake up, Sarah was blind and could not smile.  She now had cerebral palsy.  She could not swallow and required tube feedings.  She could no longer dance or sing.

Sarah on her 3rd birthday with her mom and dad

Sarah on her 3rd birthday with her mom and dad

In 2004, we celebrated Sarah’s 3rd birthday in the pediatric intensive care unit at the hospital.  She was in a coma and intubated at the time, so we sang Happy Birthday in hushed voices at her bedside.  The day I took this picture, I held steadfast to the hope that she would have many more birthdays to celebrate, despite overwhelming odds to the contrary.

And she did.

You can read Sarah’s story here.

Sarah can’t dance, but she can ride a special bike.  She can see much better now, thanks to eye surgery and glasses.  Sarah loves to cuddle with her big brother  Matthew.  She adores music and loves to sing and laugh.  She is truly a heaven sent gift for those of us who are blessed to know her.

Napping with big brother Matt

Napping with big brother Matt

Best of all, Sarah got her smile back!

Sarah with her mom, Sandy

Sarah with her mom, Sandy

This year, just before her 8th birthday, Sarah had problems breathing and had to return to the hospital.  She has developed pneumonia and other complications that required her being placed on an oscillating ventilator to help her breathe and give her body the necessary time and energy to rest and recover.  The doctors have her on a lot of different medications.  Because she’s on a breathing machine, she has been given medication to keep her asleep and comfortable.

Sarah had her 8th birthday in the PICU.  There were balloons and signs and Happy Birthday songs for Sarah, but she wasn’t awake to hear or see the celebration.  Her big brother Matt, little brother Graham, sister-in-law Laura and Aunt Sue (me) spent Easter Sunday with her, taking turns visiting, holding her hand, and praying for a speedy recovery. The road back home for Sarah will be a long one … many weeks to come of waiting, watching, and praying.

I’m asking for prayers and good wishes for all of you who read this post.  I believe in the power of prayer and positive thinking.  Please keep Sarah and her family in your thoughts and hearts.  Pray for the amazing doctors and medical staff that are treating Sarah 24/7.  Their care and compassion is miraculous.

Thank you for taking the time to read about Sarah.

Once again, we’re waiting for Sarah’s smile to return.

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That Wasn’t So Scary

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$15,000 bucks a pop

I’ve completed two IVIG infusions.  On my first visit to St. Louis University’s Cancer Center, I was pretty scared but did my best to not freak out.  Initially the process was surreal, driving in the rain during rush hour, trying to find the dang place, getting lost inside the hospital … my feet felt like concrete and I couldn’t walk very fast. The infusion center actually looked like a nice day-spa, if you ignore the IV polls.  Nice pictures on the wall, gobs of magazines, TV’s at each comfy, oversized lounge chair, warm blankets to cuddle with, side-tables with cup holders … low lighting and soft laughter from the nurses who fluttered about.  On closer inspection, I noticed the emesis trays at each table, a row of  baseball hats to wear if the need arises, and catalogues for wigs, scarves and hats.  Serious scary stuff.  My nurses, Angela and Mary, were so very kind and reassuring.  They were also happy to see a patient with veins that haven’t collapsed yet and had no trouble finding a good place for the IV port in my hand.  I was all ready to rock and roll until my nurse told me I’d have to wait about an hour before starting.  Whey I asked why she said with a smile, “This stuff is really expensive so until I see the whites of your eyes and the needle in your vein, we don’t prepare the medicine.” I don’t blame her.

I was prepared, or so I thought, for any possible scenario, except for what I experienced.  I was zonked out on Benadryl and could hardly stay awake!  I suppose that was a good thing, as I eventually drifted into a fuzzy nap for a couple hours, interrupted only by the little infuse-o-meter beeping every 30 minutes.  Occasionally there’d be a text message on my phone from my sister, a friend, and my boss.

Around noontime the place was completely booked up with patients young and old.  Some had PICC lines, some had portable infusion packs.  I saw bald heads, wigs, hats and full heads of hair.  Many folks had headphones and were either listening to music or watching television.  Visitors were nearby and they mostly read or shuffled in and out.  There was a big table with a jigsaw puzzle that people worked on.  A dining room offered tea, coffee, soft drinks and snacks.

Some patients were very chatty and others, like me, were not.  Ever the introvert, I made some small talk with an elderly patient next to me when she couldn’t figure how to unplug her IV pole.  I was impressed with the silent acceptance and respectful vibe in the room.  Several patients were obviously quite ill and uncomfortable.  One got sick in her chair.  Some people were there for just an hour or so and a few, including me, were there all day.   A friend came by with lunch in the afternoon and hung out with me until it was time to leave.

I was pretty tired that day and the day after.  At times, it was a challenge to stay away at work the next day.  During the second infusion I had a little trouble with getting too cold, so the infusion rate was slowed and that, along with a couple extra blankets, solved the problem.

So for those of you out there potentially facing a similar experience, I’m here to tell you that it’s not as bad as you might think.

I don’t have a bald head.  I don’t use a wheelchair.  I don’t walk with an abnormal gait.  I’m not a celebrity or a famous author.  I don’t stand out in a crowd of people.   I’m just a regular person trying to deal with an absurd, incurable, illness that doesn’t look sick.  And I’m writing because you need to know that the world is full of people just like me.  My goal is to bring understanding, humor, levity, comfort and hope to anybody that needs or loves someone who is invisibly disabled.  Sometimes, it’s not so scary.

Hospital Antics

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Is it too much to ask for a little diversion when undergoing a 6-hour infusion in the hospital?

Next Thursday I’ll have my first IVIG infusion.  Need get to the oncology/hematology department at the butt crack of dawn.   Hospital instructions included  a veritable cornucopia of random advice: bring a blanket/or jacket in case I get chilled; bring my own lunch and they’ll store it in their fridge; bring headphones if I want to watch the bedside TV; drink a lot of water before arriving so they can easily find a big fat vein to stick; wear socks.

The last thing I want to do is go to the hospital.  Under any circumstance.   Hospitals are full of doctors, nurses and patients.  Everybody washes their hands, right?.  Right.  The sick people infect the visitors.  The visitors subsequently get sick and wind up in the hospital.  It’s a vicious cycle.  In addition, my immune system is filled with deranged T-cells that can’t tell an antibody from an antigen.

Unfortunately for me, I can’t avoid the hospital this time.  I have lost pharmaceutical control over my immune system … translation … lots of money and time for lupus medication that did not work.   So I’m stuck, pardon the pun.  Ever the optimist that we can make lemons out of lemonade (pardon the slip), I decided to make a fun list of things to do while a needle is stuck in my arm for six hours.  In no particular order, here they are.

1.     Take cell phone pictures of the arm in question.  Send them to friends.  Or not.

2.     Zone out in the Happy Place part of the brain that copes with stress. Take drugs if that doesn’t help.

3.     Write blog entries

4.     Organize and moderate a patient panel to discuss healthcare reform.  Will keep you updated.  Or maybe take over the hospital.  “Death to the insurance carriers!!”

5.     Working with my jewelry kit, design and make bracelets.

6.     Call for pizza delivery because a cold boring sandwich is just a cold boring sandwich.

7.     Hire a stripper.  Or convince someone to do it for free.

8.     Learn to juggle with one hand.  Just don’t anybody sit too close or you’ll get bonked on the head.

9.     Read a book about coping with Lupus. Oops! I already threw it out the window last night.

As you can see, this list isn’t very long.  And yes, this list isn’t very good, either.  So send in your suggestions!  Drop me a line!