Doomsday

Every year, come November, doctors and patients begin scrambling to get everything major done before the beginning of the next fiscal year for their deductible.  We’re no exception.

For the last month I’ve been calling every clinic we’ve ever had anything to do with, even if it was nothing more than a single consultation, to make sure we got Peanut and Bear in for an appointment all on the same day (if it was needed).  The biggest concern was traveling.  With three kids under two years old, I don’t want to have to keep trekking them back and forth and screw with their nap times that I’ve so carefully perfected around my nap time.  I need my nap time, damn it.  Unfortunately, I never actually nap during my nap time.  My theory is that, by convincing myself that I actually had the choice to nap, I’m less bitter about doing housework.  If that means blatantly lying to myself on a daily basis to make it through the day, so be it.  I could honesty take a nap once I put them down.  But, when I notice the house looks like a war zone, I can’t help but clean it. (while, of course, convincing myself that I just opted out of my nap of my ow free will)  If I’m honest with you, readers, I am absolutely obsessive compulsive about cleaning.  I hate stepping on toys.  HATE.  So when I’m faced with the dilemma of “me time” and a clean house, I always choose the house.  I can’t handle “me time” when I’m getting gouged in the foot by an enormous plastic stegosaurus, and tripping over toys that sing that same song over and OVER.

That said, the other I opted out of my usual cleaning routine.  Only in the most stressful situations do I chose sitting in my kid’s filth over cleaning.  I was there.  I was beyond there.  Husband’s work recently got new insurance.  After talking to Hanger (they’re a Children’s clinic that makes prosthetics and orthotics) they said our new insurance deducible wasn’t covered and we would be charged over $1,200 out-of-pocket for Peanut’s custom braces.  Custom braces that we had no choice but to get.  *What?!*  Then they went on to tell me Peanut wasn’t even on the insurance plan.  *WHAAAT?!*  After arguing with them for a good 20 minutes I hung up nearly in tears, and so overwhelmed my mind was a complete {insert VERY strongly worded chain here}.  After a moment I realized that this meant that tomorrow, when we went to Neurology for both of the girl’s follow-up appointments, possibly casting Peanut again in orthopedics (I’ll get to this later) and getting Peanut fit for a second pair of custom braces, NONE of that would be covered either.  This is the scene in a movie where I collapse at the kitchen table and wail to myself that life is so unfair.   Then, I realized to my complete horror, that we already covered our very high deductible from the old insurance company.  Now, we’re starting over for the last two months with this new one *of f#@%ing course*, THEN starting over AGAIN in January.  We were looking at roughly $20,000 in a 12 month period.  *OH. HELL. NO.*

After briefly considering selling the kids and running away to mexico, I went the honorable route and immediately called Husband’s work.  Normally I’d call husband and tell him what I needed done, but I had already called him once to ask him about a possible babysitter.  This time I went directly to HR myself.  I needed to get something figured out right now or I was going to literally lose my mind.  After a brief frantic conversation, I found out the deductible was covered for the rest of the year and Peanut was on the plan but was “On the second page”.  Whatever that means.  I’m assuming that meant the clinic staff didn’t look at a second page of family members that was provided.  When I say it like that, it kind of makes me feel like the Duggars.  *Wow.  Never.*

Okay.  *deep breath*  That major crisis was averted.  Now I just had to survive the next day of appointments.  It wasn’t even the next day and I was worn out and stressed to the max.  Just thinking about trying to navigate the appointments tomorrow after my headaches today left me reeling.  I tried to avoid calling husband for comfort.  I really did.  But I’m weak.  I called Husband at work, crying like a baby.  Even though the insurance problem was fixed I was already beyond overwhelmed and couldn’t handle simple tasks without breaking down.

You know when you’re trying to do your hair for a nice event, and it just won’t sit right?  You brush a couple of times and pull it back, but notice a chunk of hair isn’t sitting right.  You take it out and brush it out and pull it back again.  It’s still wrong.  You roll your eyes and take it out again and get your hair a little wet and brush harder.  No difference.  You scowl and try to get it completely wet so it will lay flat.  Still nothing.  You growl and your scowl deepens and you start brushing so hard you’re practically slamming the brush onto your head.  It’s still. not. right.  You begin to feel desperate.  You start whimpering and yelling at your defiant hair as you’re pulling on it desperately.  Eventually, you’re left with hair that’s completely mangled, your face is tear-stained and you’re so emotional that you don’t even want to go anywhere anymore.

That’s how I felt at this point.

Thankfully Husband had his stress-o-meter on and realized I was well beyond the point of no return.  He immediately offered to come with and moved heaven and earth to make things work with his co-workers who, God bless them, did everything they could to cover for him so he could help his now clinically insane wife.  So, husband now had a vacation day to come with me and the three kids for a potential 5 hour (hopefully much less!) hospital visit for a brace fitting, a neurology follow-up appointment, and possibly re-casting Peanut (Still not there yet… I promise I’ll explain it later!).  Things were looking up.  Or at least as “up” as they could possibly be.

So, that evening we went to bed and set the alarm for 6:30 AM.  Doomsday.

6:30 came around and I woke up irritable and tired.  Just like I do any day I have to get up before 8 AM.  This time, though, I had drained so much of my energy levels the day before during my breakdown that I was only just barely re-energized.  I could tell this was going to be a very long day.  I laid in bed going over my pre-travel to-do list.  I needed to consider what was and wasn’t necessary to pack for the day.  I didn’t know how long we would be gone.  It all depended on the doctor’s decisions.  At 6:45 I finally dragged myself out of bed and stumbled to the shower.  When I got out of the shower I was a little less bitter about being up so early.  I thought of husband who got up much earlier than I did to go to work to make up for the time he would be away.  Not to mention he would be going straight back to work when we got home.  Poor husband… he was in for a very, very long day.  What a wonderful man.  I sucked up my bitterness and started preparing breakfast for all three kids while packing lunch in case we’re still gone come noontime.

I somehow managed to get all three kids up, diapers changed, and fed in about half an hour.  In between feeding them I ran back and forth gathering what bags and supplies we needed and threw them in a pile next to the girl’s car seats and winter gear.  Husband got home and started loading up the van with the strollers and bags for me while I got the kids dressed in their winter gear.

The day was going moderately well at this point and I was feeling hopeful that we would be home by noon for husband.

We got to Children’s and went to the Neurology clinic first.  It was ten after 9:00.  We were about 20 minutes early.  I checked in and we got the kids ready to feed them a little bit more to hopefully last past lunchtime without a hungry fit from anyone.  This was when we noticed that I never finished packing lunch for the girls in my hurry to gather stuff.  *This should be interesting*  All we had was about 8 ounces of formula and rice cereal mixed in two bottles.

As if that wasn’t irritable enough, there was this little girl, I’d say about 6 years old, that was literally screaming in a fit every time her Mom told her not to throw books across the waiting room, climb on the tables and punch her among other horrendous and embarrassing acts.  This little girl was literally collapsing into a kicking and screaming fit anytime her Mother touched her to take her back to her chair.  It was awful.  It was absolutely awful.  I was so irritated but I was more embarrassed for the Mom.

The girl kept coming over by Buddy to take a book we gave him to read.  She showed him every kind of misbehavior you could imagine when her Mom came to grab her away from him.  She kept apologizing to us and we kept telling her it’s fine.  We both had a girl we were feeding and Buddy was mostly on his own.  Just sitting and soaking in this terrible child’s behavior.  I prayed that he wasn’t considering acting like this himself.

In the meantime a nurse came out and said “Ok, we’re ready to take Peanut back to take her vitals quick.”  I noted to the nurse that, when scheduling the appointment, they didn’t have any openings in this year anymore for both of my daughters, so the lady on the phone said we could bring both daughters in and the doctor would just quickly peek at Bear during Peanut’s appointment.  The nurse looked at me skeptically and said she didn’t have any information on Bear.  Her tone also said, “I’ve had a bad day and I don’t feel like dealing with this right now.”  I was a little offended at her shortness with me, but I let it slide.  I told her, again, that we had Bear with and we just needed to get her looked at quickly.  The real concern was with Peanut, Bear was more of a precautionary measure so it wasn’t a big deal.  The nurse gave me a scathing look and said she’d see what she could do.

20 minutes later, around 9:50, we were still in the waiting room.  I was beginning to get irritable and that obnoxious, terrible child was STILL in the waiting room with us.  Thankfully Buddy wasn’t taking her cues on how to treat your Mother because he just sat in his chair and checked out his alphabet book and played with Husband.  The girls, though, were getting crabby.  They wanted to either both be held, or playing on the floor.  I wasn’t about to put them on a hospital waiting room floor so I had no choice but to hold them.  Hold them, and bounce them, and pace with them, and do just about anything we could do to keep them from being loud and angry in a waiting room full of other people.

Finally, over an hour after arriving for our original appointment, the manager came out to talk to us.  She basically gave us the schpiel that Bear had to have her own appointment and couldn’t be seen off the books.  I was livid.  I was absolutely livid.  I went off on her (albeit nicely).  This was not our fault.  We were told that both kids could be seen and I asked multiple times if this was really okay and I was assured it would be.  Husband had to put a lot of people in a hard position at work so he could come with me and bring all three kids to a multiple hour multiple clinic day at Children’s.  We were already running an hour behind because of them.  This was NOT MY FAULT.

The lady nodded sympathetically with a bored face, then went on to say, “Well, we could schedule for you to come back next week-”

“Absolutely not.”

She looked at me a little taken aback that I said no.  I wasn’t letting this go.  She clearly had no idea who she was dealing with.  She tried to tell me to schedule another appointment again.

I was furious.  I wanted to scream, “ARE YOU EVEN KIDDING ME?!”

I looked her square in the face and calmly explained our situation.  Again.  We had gone out of our way to get our entire family up before sunrise, drive an hour to Children’s and get husband off of work at the last-minute because her staff assured us this would work.  (I didn’t mention that I was on the brink of insanity and doing something I would probably regret later.  I didn’t want to scare her away.  Yet.)  On top of all that, we were now an hour late for Peanut’s SCHEDULED appointment.  I stared her down and willed her to understand.  This was NOT our fault, it was theirs and they WERE going to fix their mistake.  We were NOT going to be put out, again, because of this.

In the meantime the girls were still being crabby and the naughty girl was still screaming and throwing fits in the background.  I glared at her and mentally kicked her in the face.  This girl was beyond irritating.

Finally, the manager seemed to come back to reality.  A look dawned on her bored zombielike face.  We were tired stressed parents and we were being thrown to the curb.  Another ten minutes later she came back and said she couldn’t see Bear, but talked to a number of the Attending doctors that had dealt with Bear and they cleared her from needing to have this follow-up appointment, then she immediately scheduled both girls with their best neuromuscular specialist, apparently a world renown Neurological Pediatric Doctor, for their next follow-up appointment come next March.

Hmm.  Okay, I’m a little less bitter now.  A little.  We were still over an hour behind schedule now even though we showed up 20 minutes early.  In fact we didn’t even begin our first appointment yet.  That, and that annoying little devil girl was STILL in the waiting room.  *What the hell are they even doing here?*

We got taken back to do vitals (weight, height etc.) and went in for the appointment.  It was simple and short, as expected.  The one thing that I hate about these appointments is that we don’t ever actually do anything.  They look at Peanut, and say they don’t think it’s a progressive disease.  *I knew this already.  You’ve told me this for months now…  Come on people, I can recite these lines better than you by now.  Let’s move ON already!*  Don’t get me wrong, it’s great to hear, but I just don’t see the point in coming for these if they don’t actually schedule tests and exams to try to diagnose her.  I don’t care what she doesn’t have.  I want to know what she does have!

I explained this to the Fellow that examined her and he said he would go and get his attending to see what she thinks.

20 minutes later she came in and we discussed, for the first time, our options about diagnosing her.  *finally.  Progress.*  In the end, she was nothing short of totally friggen awesome.  She suggested teaming up with Genetics and seeing if there is any non-experimental testing for Peanut.  Basically, there are research clinics all around the world that do experimental and non-experimental testing.  In exchange for testing subjects, they offer these services for free.  I guess they love undiagnosed patients.  They can test for and examine new diseases they’re researching, and in the process eliminate well-known ones.  All for free.  It’s all safe for Peanut.  They just draw blood or in rare cases do a skin biopsy and test on that.  The reason we want to do non-experimental is because, according to the Attending, even when they do get results back, they don’t know what it means.  It’s usually so new and unknown even when they get results they still don’t know what it actually is.  Non-experimental testing is research based on more well-known diseases.  Something they know and can explain results more clearly.

I loved it.  We both win.  They get a research subject in Peanut, and I get someone interested in helping us understand, and possibly diagnose our child.  For free.  That’s HUGE.  HUUUUUGE.

In the meantime we scheduled a repeat test on Peanut that we did when she was born and a consultation with both girls with the neuromuscular doctor at the same time.  They were bending all kinds of rules now.  I prayed it wouldn’t result in the same fashion this appointment did, but I didn’t have the energy to address this one.  Not right now.

We got everything scheduled to happen before the end of the year so we didn’t have to worry about our deductible.  Again, HUGE.  I just pray there’s not a snowstorm or something that will prevent us from getting there.

In the meantime my cousin was also at Children’s for an appointment of her own.  She came to our waiting room and Husband took Buddy to go play with them around the hospital while we wrapped up our first appointment.

On our way out the manager approached us with two gift cards to their dining room.  Lunch was on the house.  She apologised profusely for making such a mess of things for us and told me what good parents we were and how well we handled this situation (I wasn’t about to tell her about the daggers I was thinking at her an hour earlier).  Husband, in the meantime, was already tired and drained from trying to keep Buddy occupied and waking up so early for work.  I went to schedule one last thing at the main counter in the original waiting room we were stuck in.  Thankfully, the devil child was gone now and it was peacefully quiet.

As we discussed dates and things that would work, the original nurse that gave me a hard time came out and apologized to me, then went on to say that Buddy was so cute and sweet and well-behaved that she just wanted to hug him.  She said she rarely saw siblings behave as well as he did and she just loved him.  Pretty soon the other nurses who had witnessed the devil child earlier were agreeing wholeheartedly.

This really made me feel good.  They were really making up for the hard time they gave us earlier.  We had free food waiting for us and compliments on our sweet and adorable child.

Today was getting better.

We left after a couple more compliments and met up with my cousin, her daughter and Buddy, who was now holding a brand spanking new Elmo stuffed animal and a big old smile plastered on his face.  Elmo is his favorite thing in the world.  He sat in his umbrella stroller quietly smiling to himself hugging his new prized possession.  As if he could have gotten any cuter.

The seven of us wandered down to grab lunch and talked about our appointments and laughed at the kids.  It was now 11:30.  We got our food and sprawled out at one of the biggest tables we could find and chowed down.  The day was only halfway over and we needed to re-energize.  The kids had been up for 4 hours now and it was getting close to nap time.  I prayed that they’d nap in their strollers but, of course, that didn’t happen.  The girls were still hungry and we had nothing more than the remainder of their bottles to feed them.  After that, it was Cheerios.

Eventually we said our goodbyes to my family and headed up to appointment number two.  Orthopedics.  Thankfully that and Hanger would be easier than Neurology was.

Peanut now has braces on her feet to help hold her feet in a neutral position as she grows.  They’re really nice, but they’re too big for her tiny feet and she had been getting soars on her legs and feet where her new overnight brace was chafing.  If she had her daytime ones it wouldn’t be a big deal because those would be custom fitted and she would only have to wear the bulky overnight ones at night when she wasn’t wiggling.  Unfortunately, we didn’t have her custom fitted daytime braces done yet so she has to wear the overnight ones 24/7 until they’re done.  When we met with the doctor we discussed whether or not to put casts back on Peanut until the custom braces were done to avoid more chafing.

I did NOT want to put her back in casts for a number of reasons.  She had been in splints, braces or casts pretty much her entire life thus far.  I was tired of taking two steps forward then one step back.  It was progress, but very slow progress.  Not only that, but she had grown very sensitive to touch because her legs were always covered.  I could hardly stretch her without bringing her to painful tears because her skin just couldn’t handle any kind of light pressure.  It had been a week and she was finally just starting to not be in pain every time I touched her skin.  I didn’t want to put her through that again.

The doctor, thank god, agreed with me.  We were given another prescription for the current overnight braces to be fitted more personally for her tiny feet and we headed down to Hanger.

The guy that takes care of us in Hanger is totally awesome.  He’s a stringy old man with thick, lopsided glasses, a big white fluffy beard and a Homer Simpson hairstyle.  He looks totally awkward, but is the happiest and friendliest man you will ever EVER meet on the planet.  I adore him and so do the kids.  Unfortunately, it was now 2:00 and the kids were one nap and a meal and a half behind schedule.  They were tired and hungry.  Very hungry.  They were not even remotely amused by him today.

I gave them Cheerios by the handful and they greedily attacked my hands before I could even get it to their mouths.  Buddy stole handfuls and hid under a table to snack, making husband get on his hands and knees to pull him out.  In the meantime the man who fitted Peanut with her braces ran back and forth and got us new socks that help reduce chafing with the braces, replaced a few pieces here and there, and altered a few other pieces to help her fit comfortably in the braces.

He never once complained about our kids.  I think he could see the exhaustion in our faces.  I wondered, with a little humor, if he was calling our kids Devil children in his head.  It was very possible.

Finally, nearly 9 hours after waking up (longer for Husband), and about 6 hours after arriving, we headed back to our van.  Cheerios strewn all over the strollers, bags hanging open and random items and papers crammed into any empty nooks crannies and pockets.  Husband and I methodically threw things together and loaded our three tired and hungry screaming kids in the van.  We got in and Husband cued up his talk radio.  Normally I would have objected, but he had handled this long nightmare worse than I did.  He wasn’t used to hospitals and all three kids this long.  He needed his political talk radio and I wasn’t about to take that away from him.

Before we even left the parking garage, all three kids were passed out cold.  All five of us were exhausted and ready for bed.  It was only 3 in the afternoon.

I’m so happy to have gotten that day done, but I still have two more days like that to go through before the end of the year.  All I have to say is I can’t wait for January.

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