A Positive ER Vist

Pin It

 ZippyAPositiveERVisitFB

How many of you have had terrible hospital/doctor visits?

How many of you dread going because you are sure that they won’t believe you?

Help you?

Or even Be Kind to you?

Every time I take my children I worry about ALL of the above and then some, including someone with good intentions calling Family Services.

I mean, seriously, how many people can cause bruising and dislocations or fractures by sitting in their wheelchair, taking a breath, painting their nails or other mundane tasks?

Not too many I would guess.

Recently I had the opportunity to seriously test our local emergency rooms with one of our “odd stories” and subsequent bruises and injuries.  The visit went so well I wanted to share it to offer hope and commend the hospital, doctor and staff for their support and kindness.

THE “ACCIDENT”

(Yes, the following is possible and true for those who have never heard of our syndrome.)

Late Friday night, my eldest daughter was in too much pain to attend her graduation so we opted to watch a baby and toddler for a few hours so other parents could enjoy it instead.  We romped, played with Legos, giggled, laughed and had fun like a “normal” family.  My youngest daughter even carried the baby around with no dislocations or pain.

Fast-forward a few hours after the little ones leave…we are sitting the frontroom watching a movie, me on one sofa and my daughters on the other when we hear an ominous “POP”!

Fragile Handle With Care

Any EDS parent knows that a loud “POP” is NEVER a good thing.

I look over and my youngest has a look of sheer torture on her face and is stuttering, “Uh, Mom I think I dislocated something or other”.

This is not unusual so my response was simple, “Um, Ok…Want me to look at it?”

I did and her clavicle was out, her shoulder was out and her rib was not right.

Welcome to EDS.  

We decided that given her history of her joints resetting on their own we would wait it out and she could try medication, time and rest.

By 8:00am the following day she had bruising around her clavicle that looked like someone had tried to choke her and it was growing in size, her shoulder and ribs hurt even more so we made the decision to give it just a few more hours (I needed to stay with my oldest until I found someone) and we would go to the ER.

Besides another loud “POP” at midday the pain didn’t change (we believed it may have slipped back).

For most people choosing an ER is simple…GO TO THE CLOSEST ONE.

(No brainer, right?)

WRONG!

We have an ER three blocks away and short of being at death’s door we will not go there.

We have another ER 20 minutes away and 2 out of 5 doctors DO understand my daughter’s syndrome well enough to slow down and look at the big picture.  The others?  Not so much.

Then we have the teaching hospital full of residents and that are in touch with her pediatric orthopaedic surgeon when needed, but it is an hour away.

What makes our decision?

Usually the extent of the damage and how well she can travel.

On this particular day we chose to go to the teaching hospital (St. John’s in Springfield).

I am so glad we did.

Remember, as it is, my 14 year old already  has a bruised/dislocated/subluxed clavicle, shoulder and rib.  So, what happens as we are exiting our front door?

Her ankle rolls and she stumbles in to the porch wall!

Are you kidding me?  I said “That’s it!  You are using the wheelchair for the rest of the night.”  And she did since it seemed safer.

THE HOSPITAL

Hospital sign

 

St. John’s is a large hospital and sees hundreds of patients everyday in the ER.  It is not uncommon for there to be twenty patients seated in the waiting area after being assessed (many are colds and flu).  We always expect to sign in and wait when we arrive since we are not (and should not) be considered top priority.  But on this particular day there was NO waiting.

Now, as with most EDSer’s  my daughter has a list of side “syndromes” or “EDS friends” as I call them and they are just as rare if not more so than EDS.  Ironically they also have initials we have learned to use to make it easier to say.  Very often hospital staff will not only have never heard of these syndromes but ignore them entirely.  This was not the case at all!

The intake person asked all the right questions, didn’t look at me judgmentally when I said “She injured herself taking a breath” or “She is suspected of having P.O.T.S. and M.C.A.D.” and I didn’t have to spell ANY of them!!!  (This is a little happy dance all by itself.)

The triage nurses were also extremely helpful.  They took her blood pressure, weight, temp, etc… while being VERY gentle and patient.  (The POTS makes her lightheaded and dizzy at times.)  They asked additional questions about her illnesses and medicine allergies as well as her EDS.  They then took us to an ER bed immediately and followed up with a few more questions (LISTENING carefully the whole time).  When my daughter began shivering slightly I offered her one of the three hoodies I had on hand and asked her if she needed a heated blanket.  The nurse seemed a little surprised considering she had on a hoodie and tank top already.  I simply explained that the POTS and poor circulation causes her to get frostbite even indoors and we showed her the damage to my daughters fingertips.

  In less than 3 minutes we were visited by a nurse from pediatrics and being transferred to a MUCH warmer room.  (My daughter was cozy but her poor momma was sweating to death.)  I am not sure if they turned the heat up or simply have a warmer room for patients with a low body temp but for my baby it was like a little cocoon and her body could relax and not shake or tense up from being cold.

The next visit was from the floor nurse and she was wonderful.

  She walked right in and said (not a direct quote but VERY close).  “They said you have a rare syndrome and I should write it down.  Would you spell it for me so I can get right on it?”  What can I say?  I did and I even explained a bit about how it affects us specifically.  She also checked on the temperature and my daughter’s comfort.

Within just a few more minutes the doc came in and THANK GOOODNESS he not only knew what EDS was, he knew to ask about co-morbids and additional issues.  He asked what MCAD symptoms we had and the triggers as well as medication reactions.

stethoscope-13170

He didn’t look at me as though I had completely lost my mind when I explained that taking a breath created this disaster.  He didn’t try to hyperextend my daughter.  Or stretch her skin.  Or argue about her diagnosis.

He simply and GENTLY examined her thoroughly, all the while asking about any additional issues.  He seemed to decide I had a square head on my shoulders when, to his last question, as he checked her eyes  “Any other  issues?” I responded with “Well, collagen is in all our soft tissue and is affected so sure she has eye problems and the usual soft tissue issues.”

He asked if we would like some pain medication due to the fact it was obvious her pain level was high and some relief would be good.  I know it helps that our records show a history of non-narcotic choices.  (We hate meds and avoid them when at all possible.)   He even discussed pill or shot AND which type was the most useful for us.  (This is one thing many drs still don’t get.  For whatever reason EDSer’s bodies respond to pain medications differently and what may work for one doesn’t even begin to help another.)

We chose the shot after which I recalled her last Mast Cell reaction while IN a different ER to Fentanyl and had to rush out to the hall to ask the nurse for sure which he had chosen.  He hadn’t mentioned Fentanyl but I am always cautious about substitiutions or changes.

She then added Fentanyl and the reaction to the NO-NO list so that we wouldn’t forget again and informed me it was going to be Toradol.  She even stepped back in to make certain the shot is what we had chosen because she understood our skin was sensitive to trauma.  I knew it worked the fastest so I encouraged my daughter to take it.

Between ordering the shot and actually receiving it x-ray showed up to take her away and JUST as I was suggesting we might want to have the shot first the wonderful nurse came over and told the x-ray tech the same thing.  The x-ray tech was so gracious and didn’t return until the shot had a chance to help with the pain (not that the xrays didn’t hurt anyway).

  Of course, her leg and body began to tremble from the shot so she had to sit down and have help walking but that is her bodies normal reaction to ANY pain medication.

needle

Side note:  If you want your teen to hate you for a few days just order a shot in the hip (if they have never had one before).  As many times as we have been in the ER my daughter has NEVER received a pain shot.  She has had pain meds thru I.V.s and Tylenol/motrin/codeine via pill form but apparently NEVER a shot.  It hurt and she was NOT happy.  Because we try not to visit the ER unless her injury is substantial or she is green, struggling to breath and might be having a heart problem we try to fix things ourselves with resets and braces.

The x-ray attendant was very gentle and patient as my daughter stumbled her way around and tried to hold her positions without trembling.  The attendant didn’t tug, pull, or grab (which I am sad to say happens a lot and causes more harm than good).

After a short time the doctor returned and discussed the x-ray results, follow up treatment and care.  He also stopped at the door and turned around when she mentioned her neck had begun to hurt.  He immediately reentered the room and took the time to examine it and reach the same conclusion I had, the muscles were tight from working to keep her shoulder and clavicle aligned.

chest x-ray

Upon discharge we wanted to thank him and discovered that he had signed out for the evening.  I got the impression he should have been off quite awhile before he left us for the evening but NOT ONCE did he make us feel rushed, crazy or unimportant.

I just wanted to share a positive hospital experience because I know too often all we hear are horror stories of rushed doctors, rude nurses, disbelieving staff and no one listening and honestly I always go in prepared to do battle or have a long wait.

I can only imagine the sight we presented with her wheelchair, an overloaded backpack (we take chips for salt, Gatorade for electolytes and water as well as current meds, drinks, and books or tablets), 3 hoodies, a cuddly and sometimes a blanky while bundled up like we were in the arctic but not once did the staff make a judgement call or show disrespect.

Do you have a positive experience to share?  Please do so in the comments or with an email to thezippyzebra@outlook.com

ZippyAPositiveERVisit3

Feel free to follow us on Pinterest, Facebook or Signup for Email notifications.





Get The Word Out Wednesday # 13- 2015

Pin It

Get the Word Out Wednesday

Happy Tax Day from the Zippy!

You will notice that the “Get The Word Out Wednesday” Link up was not available last week.   Life with three zebras has been a little hectic again and I made the executive decision to focus on my family and not on the blog.  I enjoy blogging and reaching out but sometimes my own health and well as my children’s has to come first……BUT we are back this week and ready to share your stories, articles and information.

Let the sharing begin!!!

“Get the Word Out Wednesday” Link-up will be available EVERY Wednesday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for zebras but ANYONE with a chronic illness that has a personal story, help (allergen-free recipes, ideas), adaptation ideas, testimonial or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, etc… and support each other during this sometimes lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along while offering encouragement to one another.

I LOVE fun crafty, save money, anything goes linkups but the “Get The Word Out” Link-up is not one of those. We will have a few rules to keep the links useful and uplifting to our readers

RULES FOR LINKING UP

1.) Blog Links must be family friendly and link to a post. Not a home page. You may link up to 3 posts in one link-up party.

2.) The links used can offer personal stories of your life with a chronic illness, pain, handicap, physical challenge or invisible illness. Income earning ideas for those with physical challenges (not promoting your downline specifically-it must be an actual post sharing what it is how and it helped you.) Tools (splints, braces, grabbers, kitchen tools, etc… that have helped you in some way to “adapt” to your challenge (illness), recipes adapted to deal with an allergy, articles on helping a child with physical or mental challenges (diet, behavior, sensory, ADD, ADHD, etc…), articles on awareness, information, compiled useful lists, etc…

3.) If you are a reader and do not have a blog but would like to offer an article you feel would be helpful. Just leave the name or a link in the comments and our readers can look it up and I will contact them about joining our weekly link-up. (Hopefully as word spreads we were have an abundance of articles to offer.)

New To Link-ups?

Bloggers here’s how:

1.) At the bottom of this post you will find a blue button that says “Add Your Link”. Click on it.

2.) Follow the instructions on the next page. Please remember to link to a specific post and not your main page. (We encourage readers to explore your page but do not want them to get frustrated and quit looking if they cannot find the article they originally wished to link to.)

3.) Stop by a few of the other blogs and leave a note of encouragement on the articles you enjoyed. Feel free to mention that you were sent there through this linkup. (To encourage them to link-up again.)

4.) Please link back to The Zippy Zebra. I do not have a special button yet but feel free to use the icon at the top with an embedded link OR a simple text link will do. (If you dont know how please message me and we can walk through it.)

 Loading InLinkz ...





Get The Word Out Wednesday Link Up #12

Pin It

Get the Word Out Wednesday

After a rough week last week at The Zippy I hope we are back on track now.

A little peek into the week:  My eldest, who can barely walk through my house with a walker and has been constantly falling was diagnosed with fibro in addition to EDS, my computer crashed and I lost a book review (Rachel I promise it is coming), the second part of my personal story and everything I had prepared for the EDS Awareness Campaign (that will be shared Friday) and to top it off I developed a death grip migraine over the weekend.

Needless to say those 10 days are over and I am thrilled! My story is retyped and will air tomorrow, the campaign website (thanks to the help of some great women) should go live Friday and my migraine is just a nagging headache.

“Get the Word Out Wednesday” Link-up will be available EVERY Wednesday for blogs featuring articles that will help those with a chronic illness.

This linkup is not only for zebras but ANYONE with a chronic illness that has a personal story, help (allergen-free recipes, ideas), adaptation ideas, testimonial or anything that would be helpful or encouraging to others, (even sharing a day in your life).

The idea of the “Get The Word Out” link-up is to spread the word about our illnesses, adaptations, short-cuts, tools, articles, stories, etc… and support each other during this sometimes lonely journey.

Bloggers struggling with pain and challenges can visit other sites, while non-bloggers can find others like them and follow along while offering encouragement to one another.

I LOVE fun crafty, save money, anything goes linkups but the “Get The Word Out” Link-up is not one of those. We will have a few rules to keep the links useful and uplifting to our readers

RULES FOR LINKING UP

1.) Blog Links must be family friendly and link to a post. Not a home page. You may link up to 3 posts in one link-up party.

2.) The links used can offer personal stories of your life with a chronic illness, pain, handicap, physical challenge or invisible illness. Income earning ideas for those with physical challenges (not promoting your downline specifically-it must be an actual post sharing what it is how and it helped you.) Tools (splints, braces, grabbers, kitchen tools, etc… that have helped you in some way to “adapt” to your challenge (illness), recipes adapted to deal with an allergy, articles on helping a child with physical or mental challenges (diet, behavior, sensory, ADD, ADHD, etc…), articles on awareness, information, compiled useful lists, etc…

3.) If you are a reader and do not have a blog but would like to offer an article you feel would be helpful. Just leave the name or a link in the comments and our readers can look it up and I will contact them about joining our weekly link-up. (Hopefully as word spreads we were have an abundance of articles to offer.)

New To Link-ups?

Bloggers here’s how:

1.) At the bottom of this post you will find a blue button that says “Add Your Link”. Click on it.

2.) Follow the instructions on the next page. Please remember to link to a specific post and not your main page. (We encourage readers to explore your page but do not want them to get frustrated and quit looking if they cannot find the article they originally wished to link to.)

3.) Stop by a few of the other blogs and leave a note of encouragement on the articles you enjoyed. Feel free to mention that you were sent there through this linkup. (To encourage them to link-up again.)

4.) Please link back to The Zippy Zebra. I do not have a special button yet but feel free to use the icon at the top with an embedded link OR a simple text link will do. (If you dont know how please message me and we can walk through it.)

 Loading InLinkz ...





Get the Word Out Wednesday Link Up #11

Pin It

Get the Word Out Wednesday

I happy to say that it has been a fairly good week here at The Zippy Zebra.  I shared the first part of my personal story including a childhood with undiagnosed EDS yesterday and will be sharing the adult years and diagnosis later.

My work with a great group of individuals implementing a EDS Awareness campaign has been fruitful and exciting.   I simply CANNOT wait to get it started.

Other news

 We havea Pinterest page at The Zippy Zebra.  Want to follow us?  https://www.pinterest.com/thezippyzebra/  It is still in the baby stages but we would love to have you join us there.

We are still accepting stories for the “Real Life series”.  Find the details on how to participate here.

Continue Reading the full Article…





The Early Years- “When EDS Was Still Fun”

Pin It

Picture for blogHi!  I am a married Zebra mom with two (diagnosed) Zebra teen girls and one teenage son.

Why do I refer to us as zebras?   You can find those details here.

The accessories at our house tend to come from a brace catalog, more than Glamour magazine, but the good news is… we match!  I am currently involved with two blogs, spreading EDS (Ehlers Danlos Syndrome) Awareness, making crafts, homeschooling my youngest daughter and various volunteer activities in my town.  I had not planned on sharing my story when I began this blog, but after multiple requests for my story, I felt I should share it here and make it accessible to everyone.  To me, my story is boring and uninspiring, so I keep sliding it to the bottom of my stack, but here goes….for all those who have asked.

My Story:

Part 1 –The early years with undiagnosed EDS; when being bendy was fun.

I had a fairly normal childhood, with accidents and illnesses.  I was sick more than any kid I knew, and it seemed to always be due to allergies or sore throats.  I was constantly on an antibiotic or home sick.  I was accused of being anorexic, anemic, bulimic and anything else that had been thought of in the 70’s and 80’s, but every test was negative.

I can actually remember my age or where we lived based on the illnesses and injuries I experienced.   Who, besides an EDS patient, does that?

Continue Reading the full Article…



this is default footer data


Make your laundry room and supplies work for you!

Pin It

Make Your Laundry Room Work For You FB

I realize that several of you may be in tight financial situations and can afford neither expensive or difficult renovations, so that’s why we decided to share a variety of inexpensive and simple ideas on how to make your laundry room work for you.  Please keep in mind that we try to suggest things that will work for a variety of people and there is no way to actually meet the needs of each individual every single time but we still appreciate your feedback.

HOW CAN I ADAPT THE LAUNDRY ROOM TO SUIT MY NEEDS WITHOUT GOING BROKE?

Lets start with the simple things.

Continue Reading the full Article…



this is default footer data


Get the Word Out Wednesday #10 2015

Pin It

Get the Word Out Wednesday

Thank you for stopping by and please be sure to tell everyone you know (bloggers and readers) about the opportunity to spread the word.

I am so excited

to share that the little plan I had in the back of my head for an EDS Awareness Campaign for the month of May is in the works and it is already bigger than my tiny expectations thanks to a great group of poeple in our community.  I will be sharing a link to the campaign website and details in the next few weeks so be sure to check back or sign up for updates.  You don’t want to miss out!!!

Other news

Great news!  We have started a Pinterest page at The Zippy Zebra.  Want to follow us?  https://www.pinterest.com/thezippyzebra/  It is still in the baby stages but we would love to have you join us there.

We are still accepting stories for the “real life series”.  Find the details here.

Continue Reading the full Article…





Laundry Sorting Spoonsavers

Pin It

Laundry Room SIgn

After the surveys one of the chief complaints mentioned was how much of a struggle it is to gather and sort the dirty laundry from all over the house, especially if there were other members in the household who refuse to put their laundry in the designated area.

Continue Reading the full Article…





How Do You Deal With Laundry?

Pin It

What are your laundry tips

I don’t know about you but laundry is one of the most difficult (and neverending) tasks I face everyday.

Just when I believe it’s caught up another load (or 4) “magically” appears.

   After putting out a few feelers in some of our support group, using my own struggles and getting our readers suggestions as a base I believe I have developed a comprehensive list of adaptations, tools and shortcuts to help make each load a little easier.

  Mondays & Fridays in the month of March and April will be devoted to sharing some of the tips and tricks we have discovered.

The most common problems listed during the survey were:

1.  Gathering/Sorting  (especially when others live there)

2.  Transferring from washer to dryer

3.  Folding/Hanging

My plan is to address these as thoroughly as possible here on the blog over the next few months if you have any specifics you struggle with or suggestions to make any household tasks easier please leave a comment below.

All comments are moderated.

If you would like your comment to remain “private”,  please type.  Private at the beginning of the comments.

#laundryspoonsavers





Christal’s Journey to Diagnosis- Real Life Story #7

Pin It

 

Christal's Journey to EDS Diagnosis FB

Christal’s Journey to Diagnosis

I was born in a small town Florida in May 1972.

I was born with a cleft palette and later on they found hearing loss.

I was five years old when they started repairing my cleft palette and began putting tubes in my ears.  Through the next couple of years they put several sets of tubes in my ears.  In my early childhood my Doctor’s name was Dr. Doorman from Lakeland, Fl.

In kindergarten I started speech classes and they ran hearing tests.  I attended almost 4 years of speech class.

In middle school I of missed lots of school due to Dr. appointments.  I fell behind really bad.  My hearing loss was making it hard to keep up.   I began not participating in PE because when I did I was non functional due to pain.  Missing school and friends became a routine for me.

Continue Reading the full Article…





WordPress Themes