What Mattered Before

The MRI.  Remember that?  Yeah, I’d forgotten too, even though it was so horrible at the time.  Funny how the world puts things in perspective for you sometimes.

My son had reported to me that he wasn’t “seeing out of both eyes” about a month and a half ago.  I took him into the eye doctor, thinking it was about time for him to join in the family tradition of wearing glasses.  Except the eye doctor didn’t find appreciable differences between his two eyes in terms of vision, and worried maybe it could be a sign of a larger problem.  With my son being on the autism spectrum, there was truly no way of knowing if this was a recent occurrence or if this had been happening for years and he just hadn’t been able to express it clearly to us.

Yeah.  So I spent the interim time between the eye doctor visit and the scheduled MRI scan freaking the $#@# out

The scan was done on December 12.  Because my son is on the spectrum, the scan was done in the hospital, under anesthesia.  Hospitals aren’t exactly warm fuzzy places.  And despite every one doing everything they could to be super incredibly nice to my son (even putting a hospital bracelet on his stuffed bear, who was allowed to stay with him the whole time), it was a really unpleasant experience.

My little guy held it together pretty well until we made it into the room where the MRI machine was.  He was still awake then, and they had a mask for him to breathe into to put him asleep.  They were going to wait to put the IV in until he was asleep (smart move).  But the mask and the huge machine and the four people it took to man it all not surprisingly made him very nervous.  I held his hand until he got drowsy enough to let it slip out of my hand, and then they led me to the waiting room.

The scan took an hour.  They scanned his head and neck.   Once they were done, I followed his gurney with him still asleep to the same day surgery recovery area.  Thankfully it was mostly empty and quiet, because when my little guy woke up, he was scared out of his mind.  He cried, he thrashed, he really freaked out when he saw the IV in his arm that wasn’t there when he went to sleep.  He felt nauseous, he was disoriented, and he just couldn’t hold it together.

It felt so, so very hard at the time.  I remember thinking how terrible it was, how awful it was, what a terrible day it was.  How I couldn’t wait to get home and let him snuggle on the sofa while I poured myself a glass (or three) of wine.  I worried what the scans would show us, how awful the news could potentially be, and how I should enjoy these blissful few days of not knowing.  Because life could be about to change.

Two days later, of course, the world did change.  I didn’t have the news yet about the MRI.  But obviously, I didn’t mind.  I knew that whatever the news was going to be for us, it wasn’t going to be as bad as what had happened to those families in Newtown.  Even if it was the worst news, I would have time to prepare my child and my family and myself for the worst, a gift those families didn’t have.

Finally, a few days later, I got the word that the results of the scans were normal. It was a relief, a pin prick of good news in the numbness of that week following Newtown, a week of funerals and sadness and fear.  My little boy will be fine.  My little boy doesn’t have the worst thing that can happen happening to him, and neither do we.  We were lucky.  Again.

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Freaking the @#$%#$ Out

Pardon me while I spend the next seven days trying not to freak the $#@#!$ out.

My son, who is on the autism spectrum, came home a few weeks ago with the results of his eye exam at school.  Here in the Northeast, we are fortunate to have nurses in every school and they run vision screenings  once a year.  Michael’s are always fishy.  They always send me a note saying I need to get his eyes checked out.  But the pediatrician always says that his eyesight is fine at the well child visits.

A few years ago I decided I better take him to an eye doctor, because I wear glasses, and so does my husband.  My husband’s eye problems are very minor and he didn’t even start wearing glasses until he was in middle school.  But mine are severe.  I’ve been wearing glasses since I was two, and my mother was partially blind in one eye.  I have astigmatism, extreme lazy eye and am far sighted.  So I figured I’d better get an eye doctor involved since there were questions.

Michael’s visit was a disaster.  Three year ago, I think it was.  Since Michael is on the spectrum, you can imagine what the bright lights, the asking of questions by strangers, the dark rooms and the strangers in the waiting room brought us.  But the worst was the drops to dilate his eyes.  I ended up having to hold him down on the floor so they could be administered.  And after that?  He was not exactly compliant with answering the questions the doctor had.

Still, the doctor gleaned enough information then to tell me that he didn’t believe M needed glasses at all.  I was shocked, but relieved at the same time.

Fast forward till a few weeks ago.  Michael gets tested again at school, and comes home telling me that he mostly sees out of only one eye.  This is classic lazy eye talk, so I promptly seek out a new eye doctor based on friend recommendations (since the other one didn’t exactly handle M’s freak out very well) and make an appointment.

The whole appointment was going about how I expected.  The doctor was, as promised, fabulous.  Funny, caring, really careful knowing Michael’s issues.  Michael is also older now, so much better able to handle his discomfort.  There was lots of reading letters, looking through various lenses, and I was sure that they would be writing me the script for Michael’s new glasses.

Except, no.

Michael’s vision is nearly the same between the two eyes, and both are below the threshold for needing correction.  He doesn’t need glasses.  But he definitely is favoring one eye over the other.  The question is, why?

The doctor was perplexed.  Normally, lazy eye comes from disparity in vision between the two eyes.  One compensates for the lack of ability of the other.  But that wasn’t the case with my boy.  Either his eyes had been much more disparate in the past and he hadn’t been able to communicate it, and now the eyes are growing and changing and becoming less different, but the habit is in place.

Or.

Or this is a recent occurrence.  In which case something else is going on.

There’s no way to know.  M says that it isn’t recent, that he’s always been this way, but it’s hard to know, because his concept of time is not the same as the rest of us.  Also, he never was able to communicate clearly about much until the last few years.  His teachers never have thought (even last week when I asked them) he had a vision issue.  He’s never had headaches or crossed eyes.

So, we have to find out if there is “something else” going on.  Which means an MRI scan at the hospital, next week.  With M’s issues, he’ll have to do it under anesthesia, because there’s no way he could lay still for the amount of time he’d need to.

It’s probably nothing.  It’s probably a situation that he’s had forever and is just being able to communicate.

I have to wait at least seven days to know that for sure, though.  And in that time, I have to be sure not to consult Dr. Google.  Because Dr. Google is scary.  He talks about things like aneurisms, and tumors and all sorts of scary things.

So I will watch, and wait, and try not to freak the #$@$# out.  Still, if you have a prayer to throw in our direction, I would be grateful.

Squish

I had my first mammogram this morning.   And while they are routine and inconsequential, it had a sobering effect on me.

First the paperwork:  “Age of first full term pregnancy:  18”.  “Last date of breastfeeding:  6/2002.”   I’m not going for a mammogram because I’m sick, or anyone is worried.  I’m going because that’s what you do when you reach a Certain Age.   I sat there, looking incredulously at those dates, amazed.  There were a series of years there where I had spent five New Year’s Eves either pregnant or breastfeeding.   But now, it’s been ten years since I held a baby to my breast.  It hardly seems possible.

I mean, I know I’m getting older.  Even though I am fighting it kicking and screaming with all the running and the face creams and the dental floss and the green and purple foods five times a day, it’s still happening.   Whenever anyone asks, I always proudly say I’m 41, that I’ve fought hard for each and every year I have.  And that’s true.  I never lie about my age (with a 22 year old kid, it’s kind of hard to go much younger).  I think I’m doing pretty well for early 40s.

Still, the boob squishing is just a gentle reminder that time is marching on.  And in the immortal words of Truvy from Steel Magnolias, “Honey, time marches on, and eventually you realize it is marching right across your face.”

A Bit of a Rant

I hate calling the doctor.  I hate going to the doctor.  I hate making the appointment, the time spent on hold, the time spent in the waiting room, the verification of my health insurance.  I hate the whole thing, which is why I don’t go nearly as often as I should.  I made my appointment for my annual exam yesterday, and it has been nearly two years since I have been.  Before that, it was five.  And before that, I pretty much only went when I either suspected I was pregnant, was pregnant or wanted to ensure that I didn’t become pregnant.

And it’s silly, really, because I have no trouble at the doctor.  Hardly ever.  I am exceptionally healthy, despite still being overweight.  I exercise often.  I eat healthy food.  I have always had very few problems gynecologically.  I don’t smoke.  I do drink, but rumor has it a glass of wine a day isn’t a bad thing. And I am exceedingly fortunate to have health insurance.

The insurance card I carry when I go to these multi hour long, mind numbing doctor visits is like the golden ticket.  If I want to enter those hallowed halls, I better have that little rectangle of plastic to gain admittance.  We had a major change to our policy two years ago, and it was amazing how profound the effect was.  Our primary care doctor would no longer accept us.  We had to pay out of pocket if we wanted to still use their services.  Fortunately the kids’ doctor still accepted the insurance.

We were given what is known as a high deductible plan.  Basically, we pay out of pocket for everything except for preventative care until we hit our deductible.  Kid running a fever?  $80 if I want a doctor to tell me why.  My daughter’s ADHD meds?  $144 a month until we hit that deductible.  MRI?  There’s a thousand bucks down the drain.  Last year we hit our deductible very quickly because my husband had to have an outpatient procedure done at a hospital.  Several thousand dollars had to be paid, all at once.

This year, things are a little better.  We’ve had time to adjust and save up money in our Health Savings Account, so now we have funds built up in there in case something happens again.  The HSA helps us plan out and budget for those pricey meds or the x rays the kids might need after that spill at summer camp.  And we are very, very fortunate that we are so far able to meet these costs, and that the preventative stuff is covered entirely.

I mention this because as flawed as our insurance feels like on the consumer end, it’s better than nothing.  My sister’s family will be losing their health insurance next month and will be forced to buy a private policy.  A policy that likely will make ours look like a Cadillac to their Hyundai.  A policy that will likely be very hard to find due to her daughter’s physical and mental health issues, which will become known as the dreaded PreExisting Condition.  My husband’s cousin has a PreExisting condition and has found herself virtually insurable under any private policy.  What they’ll do when she needs to be hospitalized or needs an MRI or any of the inevitabilities that come with her condition (she has Multiple Sclerosis), I have no idea.  Go bankrupt, I suppose.

It just seems astounding to me that in our country we can let this happen.  Let people starve or lose their homes rather than protect their health.  I don’t know if the current law being debated by the Supreme Court now is the answer, either.  It seems like a cobbled mess put together with the compromise of political interests in mind, rather than a true system that universally offers care.   Everyone must know someone, or have had experience themselves with how flawed this system is.

So I will go to my doctor visit in a few weeks.  I will complain about the wait, the tedium and the seemingly uselessness of having another clean bill of health granted to me.  But this time, I will stop myself before I get too far into it, and remind myself how truly lucky I am to have inconvenience be the only negative outcome of that visit.

 

A Labyrinth of Medicine

“How can they still not know what is wrong with you?” I asked, frustrated, after arriving at the hospital the next morning.

It had been a crazy day.  I’d picked R up at work, where they did have a small, medical clinic.  The nurse there did tell us which hospital of the two in the area to go to(I’d never had to go to either of them in the four years we’d lived in the area so far, so I had no idea where to go; I plugged the address into my new navigation device that I’d gotten last year).  R looked horrible, clutching a plastic grocery bag like it was his lifeblood; he vomited into it three times on the way to the hospital.

Once we arrived in the emergency room, we waited.  In the waiting area, even though we told the attendant at the desk that there was possibly a cardiac situation going on, we waited.  My husband, a big man who outweighed me by nearly double, needed my help to sit up.  It was only when he fell to the floor and passed out that he was put on a gurney behind the double doors that led to the labyrinth of the Emergency Medical Department.

Where we waited.  R was hooked up fairly quickly to an EKG machine to check whether or not there was a life threatening situation going on.  When it was determined that he was not having a heart attack, the nurse politely wheeled us out of the cardiac check room and into the hallway, since there were no open curtained areas available.

By this time I’d had to start making phone calls.  Z first; he was still home from college.  He could take the children off the bus and mind them until I could be home.  Thank goodness for that.  Then R’s parents, R’s boss, then my father, then my sister, then my husband’s cousin who lived close by, then my girlfriends.  No, we hadn’t seen a doctor yet.  Yes, they checked him for cardiac issues.  No, it doesn’t look like a heart attack, but we haven’t seen a doctor yet.

It was dinnertime, after we’d been moved into a different hallway (this one actually set up with spots in the hallway for gurneys; I had never seen anything like it) before a doctor finally made his way to us.  They’d have to run some tests to see what was going on, nothing could be ruled out.  In the meantime, they’d see about getting R somewhere “more private” to wait.

It was nearly ten PM before R was finally moved to a room in the emergency department.  R’s cousin stopped by to bring me dinner and give us some company.  A few doctors had been by and there were various theories, but no one was going to know anything until they ran some tests, which would have to wait until the morning.  Finally, R had sent me home; there was nothing that could be done, and he would be fine for the night now that he had four walls surrounding him.

It was a full 28 hours after his arrival at the hospital before he was finally diagnosed, admitted to the hospital and scheduled for surgery.  We were all tired and exhausted.  R was finally diagnosed with the most drama filled and least obvious case of gall stones in the history of the world.   He was scheduled for surgery the following morning.

You Can Count On Me

“I just don’t know who to ask for help,” my sister said over the phone.

My sister, who still lived in Michigan with her husband and children, needed to have surgery.  This was actually the second surgery she was going to undergo, having had a hysterectomy a few years ago.  She had not healed properly, and her doctor had found an infected area somewhere “in the nethers”, so she was going to have to go back in to have it corrected in late July.

I was confused by her statement, about not having anyone to ask for help.  “Your children are 17 and 13, aren’t they capable of taking care of themselves during the day?”

She sighed.  “Mostly, yes, of course, but still.  Neither of them can drive, and my husband has to work all day.  My daughter has some things that can’t be rescheduled.  Plus, I am going to be in a lot of pain; I can’t really expect them to help me up or down the stairs or anything like that.”

I wasn’t sure why not.  I wasn’t but a few years older than her oldest when I was designated the primary caregiver for my mother during her battle with lung cancer.  But there was no questioning this; my sister didn’t want her kids to have to see her that weak, and she wanted someone else to do the “heavy lifting” so to speak.  Fair enough.

“What about your husband’s family?  I mean, he has four siblings, some of whom have not only spouses, but also driving aged children.  Plus his parents.  Couldn’t a few of them pitch in?”

Another sigh.  “I just don’t feel comfortable asking them for help. Plus they all work too. Same with our brother, who would be no help regardless of whether or not he was even available.”

I knew what she was asking, without actually putting the request into words.  She wanted me to come out to help her after her surgery.

I did the mental math.  If I drove out the day after Michael finished summer program, I’d arrive the night after her surgery; she should come home that day.  Of course there was no way R could take time off of work for such a trip, which would be a minimum of four or five days plus a day each way for travel.  But Z could probably get the time off of his summer job, giving me another set of hands to deal with my two younger children on the ten plus hour long journey.  I could do it.

“Let me talk to R,” I said.  “I can probably figure out a way to get out there for a few days to help you through the worst of it.”

“Really?” my older sister responded excitedly, clearly relieved that I’d anticipated her question before she’d had to ask it.  “Oh that would be fantastic.”

“Happy to help,” I answered.

This was not the first time, nor would it be the last, that I felt much more like I was the oldest sibling in my family, not the youngest.

It’s Official

It was September, and I was sitting in a small chair in a doctor’s office not far from Yale University Medical Center.

It had taken exactly one week of school before I begged the teachers and therapists for advice, help, something that I could be doing for my son that I wasn’t already doing.  He was starting to talk now, one word at a time, with a total vocabulary of maybe 50 words.  But he still wasn’t toilet trained at almost four years old, and showing no signs of being ready for it.  His meltdowns were increasing in frequency, and R and Z had struggled when I had spent three days in New York on the Rick Springfield promo tour.   Without me there to anticipate his needs before Michael hit the red zone, the days had been a struggle from this trigger to that one.  Keeping peace in Michael’s world was all about anticipating the triggers.  But how could we remove them from his world?

The therapists suggested we see a neurologist to finally get a concrete diagnosis on paper for Michael.  While his needs were clear and well documented, before the age of three no one would actually give him a specific diagnosis.  If we were to indeed get the diagnosis they anticipated, they could offer him more services and then insurance might cover out of school services as well.

I sat silent in my chair, watching the doctor go through the tests again with my son, the same tests I’d seen done on him a year ago.   The questions were slightly more advanced, but all in the same vein.  I watched with a quiet sadness as one time after another, Michael either didn’t respond to the doctor at all or responded inappropriately.  It wasn’t going to be good, I thought to myself.  I could feel the heaviness in my chest.

“Boy, they always are this cute,” started the doctor.  I must have looked puzzled, because he continued.  “Kids on the spectrum.  They are often the most angelic looking kids.  That’s part of why it’s so hard for them.  They look like everyone else so no one really understands how much they are struggling inside.”

I nodded slowly.  “So he’s on the spectrum then?”  A  year ago I didn’t know what that statement meant.  What a difference a year made.

“Oh, definitely,” he answered quickly, maybe too quickly.  He turned around his clipboard where he had been marking Michael’s responses.  Michael grunted at me, which was his way of asking for the Cheerios he knew were always in my bag.  I absentmindedly reached in and handed him the round, yellow container and handed it to him.  “Look, here’s the range of scores on the spectrum.  0 to 29 is normal. 30 to 50 is on the spectrum.  Down here, in the lower 30s, are where you’ll see Asperger’s or PDD-NOS.  Go into the 40s and you’re looking at full blown autism or low functioning autism.”

I gulped.  “And where does Michael land?”

“He has PDD-NOS, pervasive developmental disorder, not otherwise specified.  It means he has some of the classic symptoms of autism, such as the speech delay, the lack of eye contact, the oral sensitivity.   That’s here in the low 30s.  It’s good; he may end up being higher functioning with a score like that.”

My heart sank.  The therapists at school had mentioned Asperger’s.  Dr. Google had told me that outcomes for children diagnosed with Asperger’s were much higher than for kids diagnosed with PDD-NOS.  But I also knew that he wasn’t talking yet, and Asperger’s kids often talked incessantly, amazingly showing knowledge they should be too young to have, like knowing all 50 states before age 3, and being able to list them in alphabetical order.  That wasn’t my kid.

“So what does this mean for him?” I asked, looking down at his tousled, long blond hair.  Haircuts were a nightmare; he kicked the last stylist three times.

“It means you need to work harder to get his neurons to connect with each other.  The more you can do early, the better chances he will have.  You already have him in the school, which is a good place to start.  You might consider adding some therapies outside of school too, as much as you can afford.”  I made a mental note to ask the school for recommendations on what therapies would be the best to add to his already rigorous in school program.

“Will he ever be normal?” I asked.  “I mean, will he ever catch up to regular kids?”

The doctor looked at me with sympathy.  “His brain is disordered, not delayed.  It works differently than yours, or mine.  That will never change.  But yes, you can figure out how to work with his brain to help him learn.  He can learn.  And I’m sure he will.  As to his prognosis, we’ll need to see him back in a year and see how far he has progressed; that will give us a gauge as to his potential.”

His potential.  Meaning, would he ever be able to be an independent, typical adult.

I could literally feel my hopes and dreams, not only for my son but for my self as well, slip away.

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