Worst Case Scenario

A friend of mine recently wrote, "Sometimes I think that we should have a special warning system for bad news when it comes. A different ring tone, a blinking light - something that says take a breath before you pick up the phone. Sit down before you speak a hello."

She's right.

This past August, Claire suffered an excruciating headache on the way home from visiting her dad in Minnesota.  She was in terrible pain for over eight hours.  As Quinn and I both suffer from migraines (I started getting them at eight years old, as did Quinn.  Claire is currently nine), I assumed she was following the family path as well.  The only curious thing was that her "migraine" lasted so long and was very different from how mine, and her brother's, are -- but I discounted that with a simple, "every headache is different."

Two weeks later when Claire got another headache, I was a little more concerned.  I decided to start keeping a headache diary for her.  Two days after that, when she got another headache, I took her to the local ER.  The doctor noted that she had no sensitivity to light or sound, was showing no neurological distress, and had no fever and therefore sent us home.  Two days after that, the day before we had our follow-up appointment with the pediatrician, Claire suffered another headache.

When we met with the pediatrician, I explained how I suspected Claire may be getting migraines, but mentioned that her symptoms were completely unlike mine or Quinn's.  Fortunately (although I didn't know at the time how fortunately), my pediatrician recommended that Claire get an MRI done.

A week later we received a phone call to come into the office to discuss the results.  Me, being the worrier that I am, was immediately concerned.  If everything was okay, why wouldn't they just say so? So, obviously (to me) everything was NOT okay, and that's why there were calling me in.

The morning of Claire's appointment I received a phone call:  The doctor was sick and we needed to reschedule the appointment for later in the week.  Trying to keep the hysteria out of my voice I indicated that I did not want to wait more than one day to find out the results.  They kindly agreed to squeeze me in the next day.

Peter and I were sitting in the office, looking at this photograph of a group of what must be the ugliest babies I have ever seen.  I'm staring at these children and this horrible thought popped into my head. The kind of thought you wish you could unthink because it feels like you are tempting the fates to even think it...

"This is the moment before our whole lives change forever..."

Moments later, Claire's doctor walks in, sits down, and gives us the news: "Claire has lesions on her brain."

Lesions. On her brain.  This can't be good.

For the next few moments I could only hear a buzzing sound as blood whooshed through my ears.

Lesions. Leeeesions. LeEsiOns.

I heard the doctor say that it was probably nothing to worry about, but that she was referring us to DeVos Children's Hospital to "get things checked out."  I heard the words "demyelization" and "MS".  And lesions. On. Her. Brain.

We had to wait a month before we could get in to see the pediatric neurologist at Helen DeVos Children's Hospital (HDVCH).  It was a painfully long month, full of me attempting to act normal, but hearing the echo in my head near constantly...  Lesions. Lesions. Lesions.

Our appointment was scheduled for Monday, October 22nd.  We arrived at the neurology department bright and early -- only to be told that, due to a schedule snafu, they had canceled my appointment.

I cried.  For those who know me best, you know this phenomenon is one of the most frightening to witness. I. Don't. Cry.  I hate crying. Abhor it. Believe it is a sign of sissies and weakness.  I am intolerant, bigoted, prejudiced and hateful towards tears.  It is simply not done.

And I sat in the neurology scheduling office and cried for a half hour.  Peter was frantic. Claire was terrified.  Mama crying is a very bad thing.  The stress of a month's worth of hearing that echo in my head had gotten to me. I had tried being stoic.  I had tried being funny - going so far as to make comments that Claire would definitely survive a zombie apocalypse as zombies probably don't like the taste of lesion-y brains.  But I had passed the point of no return -- I was losing it. Lesions. On. Her. Brain.

Tonya, the Special Processing person, went above and beyond the call of duty by getting us overnight accommodations at Ronald McDonald house and worked her tail off to get us a 7:45 appointment the next day.

We met with the chief of pediatric neurology that day, Dr. Stephen DeRoos.  He was amazing with Claire.  He was kind, friendly, approachable, and thorough.  He ran Claire through a series of neurological tests... squeeze his hands, run through the halls, look at the light... those kinds of things.  He had me run through the series of events that led to us being there.  Then he got down to brass tacks - lesions.

He didn't think they were that big of a deal.  Apparently, it's somewhat common - these lesion-y things showing up on an MRI.  She was too young to have MS and she wasn't showing any symptoms of, well, anything.

Whew! Yay! Hurrah!  Everything is okay!!

Well... no.  Because the MRI uncovered that Claire had more blood vessels on one side of her brain vs. the other.  Okaaaaay... what does that mean?

The doctor didn't know without further testing.  It could be this, it could be that, "it could be something called Moyamoya disease but that's really rare and unlikely and we're getting ahead of ourselves..."

We left the hospital with a diagnosis of "intracranial vascular disease", an order for another MRI/MRA, and the word "Moyamoya" now echoing through my brain, replacing lesions.  I googled intracranial vascular disease before we left the hospital parking lot.  Okay... this isn't good.  But the prognosis is excellent and... okay. We'll be okay.  It's not great news but... Claire is going to be okay.

I then googled Moyamoya, looked over the information for about 30 seconds, then promptly shut the browser down so I didn't scare myself to death.  "That's worst case scenario - not gonna happen."

Claire went back to DeVos this past Sunday to get her MRI/MRA done.  She enjoys this particular hospital - they go above and beyond to make it kid friendly.  The gift shop is phenomenal, she adores the garden, and the staff is exemplary.  We are so very lucky to be so near this amazing medical facility.

The hospital really needs better pjs

After Claire's testing was complete, the tech told us to expect to hear from the doctor within three to five days.  I left feeling like if it were really bad news, they wouldn't be letting us go.  Good enough.

At 4:30 yesterday afternoon - the next day, I wish I would have had that warning bell, that blinking light, that... something... that would have told me to take a moment before I picked up the phone. Take a breath. Picture something happy.

Claire has Moyamoya disease.  Our lives did change forever in that moment.

One the rarest forms of occlusive cerebrovascular disorders encountered in neurosurgery is Moyamoya disease. Fragile blood vessels proliferate around a blocked artery in an attempt to bypass an occlusion and their appearance on a cerebral angiogram resembles a "puff of smoke" or "moyamoya," a term coined by a Japanese team who first described the disease. Symptoms are TIAs, strokes, headaches and seizures. There is currently no drug treatment that is effective for moyamoya disease and surgery is aimed at bypassing the blockage with another artery to restore normal blood flow.

Fuck.

My son was born with a ventricular septal defect, which was discovered at his 3 week check up.  He spent almost a week in the hospital at the age of four months, during which time I slept in the oxygen tented baby crib with him.  He's had more shots, and tests, and pokes, and prods, and surgeries, and stitches than your average twelve year old -- to the point that he used to give himself stress migraines just going to the pediatrician for check ups.

Claire was my "healthy" child.  Sure -- she has asthma -- but that's been controlled for over two years now.  She was the robust one, the picture of health.  Finding out I have one bad heart kid and one bad brain kid -- it's just too much. I'm on overload.

This... sucks.  And I'm not good at this.  I'm not patient or understanding or wait-and-see.  I'm manic and demanding and let's do something about this NOW.  But nothing good happens NOW in a health crisis.  Nothing.

I am so MAD. I am just... angry... and pissed... and terrified... and mad. I appreciate all the kind words, and thoughts, and prayers. But if God's plan is anything other than her growing up to have a fabulous life, a beautiful wedding to a wonderful man (or woman) who adores her, giving birth to perfect children (if she wants to), and being loved and adored and contented and happy 'til the ripe old age of 97... I don't want to hear about it. Fuck God's plan. She is my BABY and I don't want to plan whether or not I should bury her or cremate her or where we would spread her ashes and what to say at her funeral. No. Fuck No. She is my baby and she is going to have a LIFE. A fabulous wonderful perfect everything she ever wanted LIFE. God. Dammit.

She has a mother, and father, and brother, and grandfather, and almost stepfather, and aunts, and uncles, and cousins, and friends who LOVE her.  As my best friend said, "This is Claire.  CLAIRE.  The world needs that little nut."

So. Screw you, fates, and world, and Moyamoya.  We aren't going down without a fight.  We are strapping on a fabulous sparkly purple cape, gearing up, and heading in to battle.

Because when the zombies come, my little lesion-y brain kid is our ace in the hole.

Why Our Health Care System Sucks

Most of my blog posts are rants, but they're well thought out rants.  This one isn't.  So it's probably going to be full of typos, and spelling errors, and grammatical errors.  The spelling and grammar Nazi in me cringes at the mere thought, but I need to get this off my chest and I don't have time to edit properly so I wanted to put that caveat out there.  Errors:  If you find 'em -- just this once -- ignore 'em.

Second, there's a lot of different directions and a lot of information here.  Like I said, it's not the most well thought out rant I've ever had.  But, as this is my diary (of sorts) and since I find writing cathartic (sometimes) you're all just going to have to bear with me.

Here we go...

First -- I'm a welfare mom.  I'm just going to throw that right out there.  I am a recipient of Medicaid.  As both my children have chronic conditions (Quinn has a heart defect, Claire has asthma), I feel VERY fortunate that we qualify for such a program.  Claire's prescriptions would run me about $700/month and pediatric cardiologist appointments are quite pricey. 

Now, it's important to note -- I have a job.  In fact, I have several of them.  I've been a virtual assistant for nearly a dozen years, and I make a pretty decent wage doing it.  I used to make a better wage, but then my long-term client fired me.  However, I'm slowly starting to earn a decent wage again and I'm hopeful that, eventually, I won't be a welfare mom.  Right now though?  Things are tough.  Therefore...

I'm also a food stamp recipient.  Thank-freaking-God, otherwise I'm pretty sure we'd all be starving to death.  And, because I'm fortunate enough to qualify for this program, I'm able to get good, healthy, non-processed food for my kids and me.  Which helps keep them healthier than if I didn't qualify for food stamps.  Processed food is, sadly, cheaper than the good healthy stuff. 

Any person who ever bitches about how "easy" it is to get welfare hasn't ever applied for it.  I needed to provide NINETY pages of proofs and fill out a 10-page form (I think -- it all became a blur after about page 5).  Then I needed to have a telephone interview and provide more proof.  According to my caseworker, whom I absolutely adore, it's about an 80-20 split of people who get welfare who need it, vs. people who are cheating the system.  Granted, I wish that 20% figure didn't exist at all, but what system doesn't have its fair share of cheats?  I like to focus on the fact that 80% of the people are getting the help they need, and that they qualify for.

Another thing to note?  I have an iPhone.  I've seen this charming little meme out there about the girl with the iPhone paying for her groceries with food stamps.  It never ceases to piss me off.  Why do people judge what the people in front of them are buying at the grocery store, and how they're paying for it?  You don't know them. You don't know their story.  But let me tell you mine.

This asshat needs to mind her own business at the checkout

I have an iPhone, an iPad, an iTouch, a Mac computer, and a Kindle.  ALL of them were purchased for me by my ex-client.  ALL of them were gifts.  And I use ALL of them in my pursuit of new clients to generate more business.  I didn't buy any of them -- I couldn't afford to.  And I can't afford to sell any of them either -- they are worth more to me and my future business endeavors than I could ever get for them on eBay.

I also have a Coach purse (it's fake), a 4-carat diamond ring (it was my mother's), and two platinum rings (combat pay for 11 years of marriage and birthing two kids -- at least that's how I think of them).  If I get run over by a bus tomorrow, these are pretty much the only inheritance my kids will receive.

I'm also on track to make about $12,000 this year after expenses and that's if I'm lucky.  And THAT is why I qualify for welfare.  So -- go ahead and judge me in the check out line for having my iPhone in my fake Coach purse.  I'm pretty sure it's not enough incentive for you to want to trade places with me for my food stamps.

Anyway... I have Medicaid. And I'm damn lucky to have it.  Except - most providers don't want to take it so a lot of time I'm left struggling to find good medical care for my kids.

My primary caregiver is FANTASTIC -- we are so lucky to have her.  In fact, if anyone in the Mason County area is looking for a smart, responsive, proactive primary caregiver, message me and I will give you her name.  She's wonderful.

However, both of my kids have "issues" that require specialty care.  Quinn has the aforementioned heart defect and it's looking like we're going to have to start seeing an endocrinologist to deal with his growth issues too.  I'm pretty sure pediatric endocrinologist are about as pricey as pediatric cardiologists.

Claire has her aforementioned asthma condition and we've recently found out she needs to start seeing a pediatric neurologist.  She'd been having headaches -- bad ones -- and my pediatrician decided to do an MRI.  Her results were not so good -- she has lesions on her brain.  I don't know what that means, that's why we need to see a neurologist.  But lesions... on her BRAIN -- that's sounding not so bueno.  In fact, it's hard not to freak completely out when you hear the word "lesions" coupled with "brain".

We got the results of her MRI two weeks ago and have been waiting to hear from the neurologist.  And waiting. And waiting.  So -- finally -- I called the hospital today and found out that they could see Claire. In January. Over 3.5 months from now.

I don't know about you, but I can't wait for 3.5 months while the words "lesions" and "brain" swirl together nightmarishly in my head.  I want to see someone NOW.

So -- I get on the phone and start calling.  University of Michigan.  Detroit Children's Hospital.  The Cleveland Clinic.  Mayo.  I explained to each of them that my nine-year-old daughter recently had an MRI where it was discovered she had lesions on the brain and my doctor was recommending a consult with a pediatric neurologist.  Each hospital asked me what insurance I had.  When I told them it was Medicaid, they couldn't rush me off the phone fast enough.  "We don't accept that insurance plan."

Click.

Wait... I have a nine year old. With brain lesions.  Aren't you supposed to help me?  Isn't the Hippocratic Oath, "... [F]or the benefit of the sick according to my ability and judgment; I will keep them from harm and injustice"?  Did I miss the part where it says, "Unless I don't accept their insurance plan"?

No one.  NO ONE can tell me that the health care system is not broken.  I don't care if you're Republican, Democrat, or Independent -- this system doesn't work.

I spent hours today working with my doctor's office -- who is unbelievably frustrated at their inability to get care for their patient based on a pencil pusher's policy -- trying to find someone who would see my daughter.  The nine year old who loves to sing, and dance, and play dress up, and has LESIONS on her BRAIN.

And when I finally called her father to update him on the progress, his only comment was the same comment he made when we found out Quinn needed his adenoids taken out, when his hole in his heart had reopened, when he had to get five teeth removed by the oral surgeon, when Claire needed to get ear tubes put in and adenoids out: "And your insurance is going to cover all this, right?"

Oh. My. God.  The health care system isn't the only thing that is broken.

I'm going to go make a drink. Or six.  And focus on the upside that, when the zombie apocalypse comes, they're going to leave Claire alone.  They don't like the taste of lesion-y brains.