Saturday, March 28, 2015

Enough



My Mom and I were talking the other day about Ronan’s latest medical appointment.  It was a pre-op appointment to clear Ronan for anesthesia for an upcoming surgery.  These appointments can probably be done in 30-45 minutes.  But because of the many complications Ronan has, a simple pre-op appointment doesn’t exist. 

Long before we drove to the hospital for the appointment, over the last few weeks, I’d sent more than a handful of emails regarding the surgery.  I’d made or received at least 20 phone calls to the doctor and the patient advocate.  And I’d already spoken to quite a few other medical staff on behalf of Ronan.  Hours of work has already gone into an appointment that has yet to happen.  Ronan's team has had to review a great amount of material – the procedure, the medications, the precautions, the recovery. 

Even though Ronan’s been under before, and has had previous surgeries before, I was (and, honestly, still am) quite nervous each time an email, a phone call, or a discussion about Ronan has come up.  But, during the latest appointment, the one that would clear Ronan allowing us to proceed to surgery, I found some comfort. 

After telling my Mom about all of the medical stuff from the latest appointment, I shared with her that one of the nurses set my mind at ease.  This nurse, who was also a mom, was pleasant, kind, and respectful.  Now, I’ve met quite a few pleasant, kind, and respectful nurses elsewhere, but this nurse was exceptionally understanding.  I didn't cringe when she started the intake part of the appointments like I usually do.  When it was time for her to begin asking questions, I felt a sense of calm.  I sat up straighter in my chair and thought I was ready to answer whatever questions she asked.  

The questions were standard questions:

Birthdate?  December 21st

Current medical condition(s)?  Seizures, mito dysfunction, neuropathy, autism.

Reason for today's appointment?  Tooth extraction

Height?  52”

Weight?  65 lbs.

Did Ronan get a flu shot this year?  <blink, blink>

I froze.  

By the time a nurse or doctor gets to that question, especially if this is the first time they are examining Ronan, I have a few responses about flu shots that I keep in my back pocket: 

He’s all set.

We don’t do those.

We see the pediatrician about that. 

Even though they are a tad vague, those statements are all true.  Some people get pushy about the vagueness of some of my responses, but I gently remind them that we’re all set with the flu shot, and then ask them what the next question is.  Sometimes the person continues on with the next question, but some people respond with a tsk, tsk and a disapproving comment.  One E.R. doctor did that in front of a room full of medical staff because he did not like my answer.  In fact, he openly and loudly tsk, tsked me.  Instead of focusing on my child who was not breathing very well, that doctor chose to waste precious time.  In  a rant, he went so far as to blame ME for spreading disease!  For neglecting MY children’s health!  For putting THOUSANDS of people at risk!  

When he was done attempting to belittle me, I had to remind the doctor that I did not race to the E.R. with a listless child whose throat was closing for a flu shot.  I brought that child in for treatment for her current condition – which was getting more critical by the minute.  It took a few minutes, but the doctor calmed himself down, but I swore I would never let another person push me around about vaccines like that ever again.  Enough was enough!  Thankfully, we never saw that E.R. doctor again.  

Last week, when I was asked about the flu shot, I hesitated.  That question brought me right back to that E.R. room situation. 

Nurse:  Did Ronan get a flu shot this year? 

I closed my eyes for a quick second.  Then I confidently answered her.  

Me:  “He had a reaction to one, so…we don’t get them anymore.”   

The nurse offered a much kinder response than the E.R. doctor did.

Nurse: “I don’t blame you…”

Me: (barely audible):  Thank you. 

I can’t pinpoint anything extraordinary that the nurse did besides fully accepting that Ronan has some severe complications and understanding that I really do know my son best.  She acknowledged that if this (flu shot), then that (seizures, loss of speech, health and development spiraling downward), and therefore (no more flu shots).  What she did wasn't extraordinary; it was enough.  To not have to explain myself.  To not be judged poorly.  To not be belittled.  To not be tsk, tsked.  My answer, my reason, my actions - they were enough, too.  

After another nurse and the anesthesiologist doctor came through with more questions, more input, and more information, two hours later, Ronan was cleared for surgery.   The nurse who'd set my mind at ease greeted us in the exam room and handed me the exit paperwork.  She also complimented me. "You look so organized, so put together."  I laughed.  I jokingly said that looks can be deceiving.  I am a hot mess inside on some days.  But I added that it takes other people to help get me organized.  It takes people like her.  I told her that it may have been a regular work day for her, but it was so much more than that for me.    
Tough days can add unnecessary stress and frustration.  Easily, that pre-op appointment could've been filled with lots of frustration.  With help from others, though, our day turned out differently.    

xo, Cat




Tuesday, March 24, 2015

Know The Risks




Learn the facts. 

(Vaccines are unavoidably unsafe. - Supreme Court)

Know the risks.

(Any vaccine can cause a side effect. - CDC)

Understand that once vaccinated, you can never unvaccinate.

(Shared from countless parents of vaccine injured children.)




xo, Cat


Saturday, March 21, 2015

Where Does It Hurt?

How I wish this were true for us right now...

When Ronan has an off day, I quickly try to figure out what’s wrong. 

Did Ronan not sleep well?  Is he hungry?  Is his diaper soiled?  Has he hurt himself? 

When I ask Ronan if something hurts, he’ll sometimes point to his head.  Other times he’ll point to his ankle or to his foot.  Many times he’ll point to where he had a muscle biopsy six years ago.  He points to the scar on his thigh and signs hurt.  We taught him the ASL sign for “hurt” when he got that “ow”. 

Since Ronan is non-verbal, we’ve had to be creative with getting information from him.  When Ronan is engaged, he’ll type a response on his output device:
I’m teaching Ronan how to spell parts of the body so he can be more specific. 

Ow ___ (head? tummy? leg?) 

Ronan doesn’t always want to type, so I printed a picture of the body to use with him.  Within minutes of printing the image and showing it to Ronan for the first time, when his sister asked him, Where does it hurt?, he pointed precisely to the body part that continues to ache: his legs.  

Now, when I see Ronan slowing down or struggling to walk, I bring him the picture and ask him where does it hurt.  He points to the legs Every.Single.Time.   

Body outline from a Google image search

Where does it hurt?

Legs. Legs. Legs.  

Ronan has figured out how to relieve some of the pain he’s in himself.  He did that when he turned on the back massager, laid it down on the couch, and sat down next to it so that he could get some relief.  Ronan, who used to be very active and get into everything and climb on everything, will sit still with his feet or legs on the back massager for up to 20 minutes. 
Ronan tries to work through the pain that I have not been able to take away.  
Watching Ronan try to self soothe more frequently these last few months had us worried.  He has pain that I have not been able to take away.  I had already raised our concerns with his doctors, but it was time to revisit the issue.  After several conversations and medical appointments, physical therapy and orthotics were ordered.  Ronan was still seeking relief for his feet and legs though. 

After more conversations, more appointments, and some testing, we got some troubling news.  That came last week.  After the testing, when the doctor said, “Come.  Come sit down so I can talk to you,” I knew that what she was going to say was not going to be good news.  I was right.  It was not good news at all.  Ronan has neuropathy.  Not only that, but irreversible damage to some of his muscles has likely already happened. 

Things have been difficult for Ronan for quite some time, thank you vaccine injury – the gift that keeps on giving, but I wasn’t expecting to hear that awful news.  Adding one more medical issue, one more diagnosis, and adding another painful reminder of just how fragile Ronan is was crushing.  Processing what I heard, what it meant, and realizing that there we may not be able to make it better for Ronan was literally, figuratively, and mind-numbingly crushing.  I haven't fully recovered from hearing any of it.  

We’re waiting for some more testing to be done.  When we get the results, we’re hoping for an answer.  But as with other complications Ronan has suffered in the past, there’s no guarantee that we’ll get a definitive answer.

In the meantime, we're hoping.  We're praying.  We're do everything we can to relieve the pain, even if it's just temporary relief.  We'll do that while Ronan’s mobility continues to decrease and as my frustration and worry increases exponentially. 

Ronan’s hurting.  So am I.  It shouldn’t be this hard.  But it is.  

xo, Cat


Friday, March 13, 2015

You Don't Need a Flu Shot for a Broken Arm

You know that the medical system is messed up when an 8-year old wants to leave a doctor's appointment.  

Tonight, my daughter  fell while playing basketball and busted up her elbow.  Immediate pain and swelling were cause for concern, so she and I jetted over to urgent care to have her arm checked out.  Looking over my shoulder as we checked in, I could feel Izzy grip my arm as I answered some questions.  The "does the patient need a flu shot and/or a pneumonia shot" question on the intake form immediately made her skeptical. 

"Mommy, a flu shot??"  

She knows that this year's flu shot is only 18% effective and that the flu shot was one of the shots that took her brother's voice away all those years ago.  Izzy has nothing nice to say about the flu shot, and hates to even think about it.  She knows it, and other shots, hurt her brother.  I don't blame her for not liking it.  I don't care for the flu shot either.  

I replied, "I know honey.  It's a little ridiculous, isn't it.  You don't need a flu shot when you've broken an arm." 

Apparently, the nurse thought we did.  

During the intake when the nurse asked if my daughter needed a flu shot, I answered, "She's all set," and then quickly changed the subject.  Wanting the woman to stay focused on why we were at the clinic, I repeated, "So, it's her left arm that's hurt.  She fell right before dinner.  We got a new basketball hoop, and the kids were having so much fun...until this..." and I pointed to the swollen elbow making sure the nurse looked at it.  

With pen poised, the nurse finally looked up from the clipboard and stared at Izzy's elbow.  She said, "Oh.  Okay."  Glancing back at her papers, she looked at what was next on her list:  height, weight, temperature, blood pressure.  "Let's get her on the scale next."  

Later, as just the two of us waited in the exam room, Izzy pointed to a sign on the wall.  It was a sign advertising the flu shot.  She asked, "Why do they always have to ask about the flu shot?"  

I quickly replied, "To make money."  Then I reassured her, "Don't worry, honey.  We're not here for a flu shot."  I told her this wasn't a normal doctor visit and that our regular doctor wouldn't even offer vaccines.  Our doctor's office would never push them on people or be a bully about them either.  They let parents choose if they want them or not.  

Leaning into me for a hug, my daughter said, "Thank you for finding that doctor for me.  We need to go back to them, not stay here with these people."  I told her that on a normal day we would; but we needed help quickly.  If her arm did have a break or a fracture, this doctor's office and these people were able to help. 

Several x-rays later, the PA we were assigned had no clue if any of the x-rays showed a fracture or not.  She told us that someone else would give the films a once over in the morning, though, just in case.  That response made the already skeptical young child even more skeptical.  With raised eyebrows, she uttered the words, "Mommy, I think we need to go."  

Proving right there that even the youngest of humans knows to trust their instincts, I, too, had already come to the realization that we were in the wrong place with the wrong people.  

Gathering up our things, we left.  

Was it a waste of a Friday night?  Not so much.  My mini activist learned a few good lessons tonight:  

✔ The medical system is broken. 
✔ Some people shouldn't be working in the medical field.  
✔ Always, always trust your gut. 

Thank goodness that brave child is feeling better.  Her arm is bruised, but the swelling has gone down considerably.  She can lift her arm, bend it, straighten it, and wiggle her fingers.  She's still hurting, but she's glad to be home and far, far away from the medical system madness.  

The quick glimpse that my daughter got of the medical system tonight made her grateful.  Izzy's grateful that she doesn't have to depend on it very much for herself.  May she, and my other typical children, be blessed with good health.  And may they always, always remember to trust their instincts.    
xo, Cat


Tuesday, March 10, 2015

You Know Him Best

Ronan has a procedure coming up this week.  He has another one scheduled in two weeks too.  I'm getting lots of phone calls about those appointments as they get closer.  The nurse, the doctor, another doctor, a patient advocate, and now another nurse - quite a few people, including me, are checking and double checking to make sure that all of the paperwork is done, that all of the information is current, and that all of us are on the same page. 

I've experienced being on the same page with other providers.  It's a good feeling.  It's comforting to know that someone else understands just how complicated Ronan's case is.  I'm grateful that they quickly include me in discussions and in pre-op work ups.  Providers have told me that they appreciate what I have to offer.  They want to hear my thoughts, and they make sure to include me and update me as much as possible.  That makes appointments run smoother, and it makes treatment plans more successful.  

Not all of our experiences with medical providers have been smooth and successful though.  I've politely listened to a doctor belittle me.  While waiting for him to be done with a rant, I collected my thoughts as well as my things knowing that that appointment would be the last one.  Another time, after learning that a provider was less than qualified to treat Ronan, I confidently yet sternly told that person they were never to touch my child again.  Their negative attitude, as well as their inexperience, were no match for Ronan.  

Those encounters are never ever easy, but they have happened.  

Yesterday, in preparation for one of Ronan's procedures, I got another phone call.  It was from a nurse.  She called to get some medical history and to tell me what to expect when Ronan goes under this week.  

Once we said hello, the nurse started asking questions right away.  Then she went over important information:  confirmation of the procedure date and time, directions to the facility, and a list of the paperwork that I needed to bring.  After she gave me a list of things to bring and what to expect, it was my turn to talk.  

Nurse:  Do you have any questions?  

Me:  I do.  You answered a few of them 

already with the information you just 
shared, so thank you.  I appreciate 
how thorough you were.  

Nurse:  Thank you. 


Me:  One of Ronan's other doctors ordered 

some labs.  Can we bring the lab slip with 
us when Ronan goes under?  

Nurse:  Smart idea.   


Me:  Thanks.  We try to do those when 

Ronan is under.  He gets so nervous for 
blood draws.  If we can do the 
labs during the procedure, that'll 
be amazing.  

Nurse:  Yes, we can do that.  Whatever 

we can do to help.

Me:  Thanks, it's hard sometimes, but 

with help from the right people, together, 
we can get a lot done for Ronan.

Nurse:  We know it can be hard for 

some kids...and their parents.  But 
you know him best.  If blood draws 
are hard while he's awake, let's plan 
on the blood draw as soon as he's asleep.

Me:  Ronan has sensory issues, he's non-verbal, 

and will be very nervous.  Medical facilities 
make him nervous.  Can I bring his favorite 
blankie and his iPad for when he wakes 
up from the procedure?

Nurse:  Of course!  You know him best, 

so bring whatever he needs to feel comfortable...

You know him best.  

It was a quick conversation, but the nurse said that to me twice in that short conversation.  I was elated.  
When I find myself talking to some medical providers, I sometimes never know what I'll say.  I know what I want to say, but I tend to wait to say anything.  I wait to hear their thoughts, their statements, their requests.  I listen quietly.  I listen intently.  I take notes.  I feel them out.  If I'm face-to-face, I watch their facial expressions.  I watch their body language, I catch their tone, and I size them up.  

En garde!  On my feet, ready to fight.  That's not how I want to feel when talking about Ronan's medical needs, but sometime, being ready to fight is the only way things have gotten done.  I wish it didn't have to be that way.  But since we've been ignored and belittled by some of Ronan's past providers, being ready to battle is an automatic response.  

Thankfully I didn't have to put my dukes up during yesterday's phone call.  That call was a reminder that good people are out there.  They're ready help Ronan.  They're happy to hear what I have to offer.  They understand that Ronan's Mom is just as part of the team as they are.  They agree that they, too, want the best for Ronan.  They promise that they will do whatever they can for him no matter what.  

The two upcoming procedures are making me nervous, but I'm finding that if I have any questions, a helpful person has been just a phone call away.  To those people who are helping, I see you.  I hear you. I appreciate you.  I thank you.  

xo, Cat


Tuesday, March 3, 2015

Pause, Reflect, Pray

Our mornings tend to be a bit busy.  Getting five kids up and out the door takes some time.  When I return back home, I get started on some house chores or get some writing done.  This morning, after dropping the kids to school, I didn't get started on my day's activities.  I took time to pause and to instantly pray.  

One of the kids left this holy card at the breakfast table.  It's a bit tattered, but it's because the kids use it when they pray.  On the reverse side is the Prayer to St. Michael the Archangel.
St. Michael the Archangel, pray for us!
Reading the news has left me speechless several times in the last few weeks.  I honestly cannot believe what I'm seeing.  

It began with measles mania.  

Which prompted vicious pro-vaccine campaigns.  

That lead to blaming and insulting the vaccine injured.  

Which somehow opened the door to vaccine mandates.  

And includes an aggressive adult vaccine schedule.  

That's all happened so quickly.  I can't help but feel a bit overwhelmed.  I can't help but think there's some evil behind it.  And I can't help but feel like most of it's been orchestrated too. 

Our rights are being jeopardized.  Our personal health care needs may soon be too.  If those in power continue to trample on our freedoms, it's going to take a miracle to make them stop.  Miracles and prayer go hand-in-hand.  So, today, when I saw that holy card, I stopped in my tracks.  I reflected on a few things.  Then I prayed.  I plan on praying all day today.  And again tomorrow.  And the next day too.  Join me if you'd like.  


St. Michael, the Archangel,
Defend us in battle,
Be our protection against the
 wickendess and snares of the devil.
May God rebuke him we humbly pray;
and do thou, 
O Prince of the Heavenly host,
by the power of God,
cast into hell Satan 
and all the evil spirits
who prowl about the world 
seeking the ruin of souls.
Amen.  

xo, Cat


Holy card is from www.hil.org

Sunday, March 1, 2015

Laughter, the Best Medicine

This story was part of an earlier essential oils post that I had written.  I edited the other entry and created a new post for this funny ha ha oil incident.  

Essential oils may not be considered medicine, but laughter sure can be.  Enjoy!

xo, Cat

--

I promise that this story has nothing to do with diagnosing or making claims about oils preventing, curing or healing ailments, illnesses or diseases.  It’s an essential oils story recycled from a Facebook status of mine from that is just about the funniest status I have ever shared.  Since I wasn’t able to add everything in that quick status about my quest to find an oil that I was looking for, I’ve added those details here.  If you know me and you know how quickly embarrassed I can get, you'll understand why this was quite the story.  I don't like it when I feel embarrassed.  But it was so funny that I have to share it again.  

And now, today's story:

So, I ran out of Frankincense and thought for S & Gs I'd run into CVS to see if they carry any.  You never know.  Some of these drug stores are catching on and offering more natural products. 

I walked in the store and saw a young man and a lady at the front counter if they have essential oils.  The woman said, “Yeah.”  Then she turned toward the young man and told him she’d be right back.  Looking at me, she said, “Come with me.  I’ll bring you to that section.”  Surprised, I said thank you and followed her.  

We walk to the back of the store where the feminine needs items were.  She scanned the shelves. 

Interesting place for the oils, I thought. 

She shook her head and looked further down that aisle.  “Nope, not here,” she said to herself.  “Come this way,” she directed me.  I stayed a step or two behind her as we made our way to the other side of the store.  

Around the corner.  

To where the personal lubrication oils were.  

Where the CVS employee extended her arm. 

Where she pointed her finger. 

And said OUT LOUD:

"THERE.  There’s the oil you’re looking for."

Um, no.  Just no.

I stared in disbelief at the lubricants.  I could feel my cheeks begin the burn and knew that they were turning very, very, VERY red. 

Nooooooo!

Lubrication oil may very well be "essential" for some, but that was NOT the type of oil I was looking for.  

Before I could say, "Gee, thanks, but that's not what I'm looking for," the salesclerk had scurried away.  

I looked up the aisle and down the aisle.  Not about to make eye contact with anyone, I averted my eyes and began to scan a different shelf in the same section.  I looked over my shoulder and headed toward the pharmacy counter.  The pharmacist should be able to help me.  Right?

Wrong.  

"Hey, sorry to bother you.  I'm looking for something called Frankincense.  It's an essential oil.  Do you carry that?"

"Frank?  Frank who?  Who are you looking for, ma'am?"

If there ever was a smack-my-head moment, this would be it.  Times one thousand. 

"It's not a who; it's Frankincense.  An essential oil.  A natural oil."

"Nope, if we have any oils, they are over..." and she extended her arm and her pointy finger to the same sexual aid section where the first employee directed me. 

I cut her off, "NO.  Please.  Not *those*oils."

"I'm sorry, honey. We don't have any, what did you call it?  Franken oil?"

Franken oil.  Really?

“Never mind,” I sheepishly replied.  

I hung my head and turned around.  I felt like I was walking the walk of shame.  I cut through an aisle that had a display of vitamins and "natural" products.  Glancing toward the bottom shelf, a dark amber bottle caught my eye.  A-ha!  It was a bottle of Tea Tree Oil.  They DO carry essential oils.  I didn't feel like picking it up to show the pharmacist though, so I kept on walking toward the front door.  I'd spent enough time in the store knowing that I just wanted to get out of it.  

I walked toward the front entrance and spied the same young man who now wore a smirk on his face.  “Hey, yeah.  So funny story for you," I started.    

"That oil I was looking for?  Well, you do carry essential oils.  But it isn't Frankincense.  Tell your co-worker nice try.  What she showed me was not an essential oil.  It was so not the oil I was looking for…”  My voice trailed off. 

I left the store and mentally added ‘Buy Frankincense online’ to my To Do list. 

Then I laughed all the way to my car. 

In between fits of giggles I promised myself something.  I promised that I would never set foot in that CVS store ever again. EVER again.  

Cat’s stash of oils, which she now buys
online in the privacy of her home :)