Rounding out the Collection

This blog is in dire need of a fluff post! 

It just so happens that I have something, or someone, that I neglected to post a couple of months ago.  So let the cute begin!

This is Capt. Jack Carter, or it was him two months ago when he was living with a different family.  He’s quite a bit…  um… larger… now.

Jack is an American Pit Bull Terrier.  Now I see that look on your face, and you can just wipe it off your mug right now!  Do you believe everything the media tells you?  You know I don’t, as evidenced by my last handful of posts, so let’s have a little history lesson, shall we?

Pit Bulls are descended from a now non-existent bull dog and terrier cross.  They are the first and oldest American dog breed.  Because of their muscular build and high desire to please their owners, they were the original working dog in America.  The first and most decorated canine war hero was a pit bull; Sergeant Stubby, pictured to the right.  Helen Keller had a pit bull as her canine companion, and Mary Tyler Moore uses a pit bull as a diabetic hypoglycemic alert dog.  The dog Petey, from Our Gang and Little Rascals, was also a pit Bull.

And not a single one of those kids had their faces bitten off!  Licked off maybe, but that’s a different kind of torture.

The truth is that Pit Bulls were bred for non-aggression towards people because the originators of the breed knew that they would have to work closely with their human handlers.  Pit Bulls, on average, score over 85% on Canine Temperament tests; higher than Collies, Chihuahuas, Spaniels, Dachshunds, Sheppards, Schnauzers, and even Golden Retrievers, which are considered the ultimate family dogs, and that’s just a sampling. 

Pit Bulls are good dogs with a bad reputation because their strength and desire to please has appealed to some of the lower elements of the human population.  DNA doesn’t make a dog dangerous, the idiot holding the leash does.  Since I proclaimed yesterday that I am in fact NOT an idiot, then my kid’s faces should be pretty safe.  :)

So now that we’ve cleared that up, let me introduce you to Jack.  The smartest idiot I have ever met.

Yes, he is a really smart dog.  Within a day he had the “sit” command mastered.  Within two weeks he knew “stay.”  Unfortunately his intelligence doesn’t extend to potty training because after two months he’s still peeing on my floor.  I will admit that he’s getting better though, now instead of peeing on the floor thirty times a day and once or twice outside, those numbers have reversed and he goes outside more than in.  Also, now after he pees on the floor he goes and sits by the door to let you know that he’s not a complete moron, and that he knows where he was supposed to do it.

He’s a work in progress.

Of course the kids love him.  They love him so much in fact that no matter how many times we tell them he’s not allowed on the furniture he still manages to find a way up there.  As evidenced here:

Here:

And here:

Ok, maybe one of them listens:

Perhaps the biggest surprise of all though, is this:

I was told specifically not to post that picture on facebook.  However, he said nothing about my blog.  :D

John, the resident animal ambivalent (not hater, he just doesn’t care one way or another), actually likes the dog.  Now you’d be hard pressed to get him to admit it, but I see the signs.  For instance, when he comes home from work he says hi to the dog before I get my kiss.  He also can be found on the floor playing with him at least once a day, and who gave him steak from the dinner table?  Not me or the kids, but for some reason he sits next to John’s chair when we eat dinner now.

So back to that whole “smartest idiot” thing.  I know it seems like a contradiction, but if you’ve ever spent any time with a pit bull, I’m sure you know what I mean (I understand that they all pretty much fall into this category).  He picks up training commands really fast, and retains them after the training session is over.  Twenty minutes on the floor with a clicker and a bag of treats, and he can learn just about anything.

When it comes to common sense stuff though…  Not so much.

For instance, yesterday Alexi and I watched for quite a long time(laughing hysterically I might add) while the cat outsmarted him over and over again.

MacDuff (the cat) was perched on the stairs, about three steps up, watching Jack warily, while Jack tried to entice him to play.  You see while Jack really wants to play with Duff, the cat is not so thrilled with the prospect of wrestling with a forty pound puppy dog.  So knowing that the dog won’t go upstairs (the evil bathtub is up there and Jack likes to stay as far away from it as possible), MacDuff likes to sit just out of reach and taunt him. 

Every couple of minutes, Duff got tired of watching Jack do his pogo stick impression, and would go up the stairs to the landing and hide just out of sight.  The dog, apparently believing our stairs form some sort of impossible Escher-esque loop, would immediately go to the basement stairs, and wait for him to return.

While Jack was standing there waiting patiently for Duff to complete his teleportation from the second story to the basement, the cat would sneak back down the stairs and smack him with a paw on the back of the head.  Then he’d jump gracefully back to his perch on the third step, just out of reach again.

They did this at least twenty times and the dog never caught on.

So you see, he’s not a brain trust, but he’s also not a total wash either.  He’s just the smartest idiot I know.

For the most part though, this is what he does during the day…

and this:

and a little bit of this:

Which is fine with me, in fact a lot of days I wish he’d do it even more.  Especially on the days when he decides that it’s too cold or wet to go outside to go potty, the days he thinks that toes were made to be yummy puppy treats, and the days when he discovers the treasures inside the garbage cans.  Because once he gets trouble on the brain, it’s pretty hard to make him forget it.  If there’s a warm lap around though, it beats out any distraction that would otherwise divert him from his nap.

Overall, he’s an awesome, silly, cuddly dog that we all love, and he fits right into our crazy, dysfunctional family.

Now our collection of weirdness that society shuns is totally complete!

Hugs,

The Wrap Up?

I was made aware of the fact yesterday, that I haven’t posted anything since before Tiana went to get her lump checked out, and that I should really let you know (if you’re not a facebook friend and don’t already know) that Tiana is doing fine.  They took x-rays and said the lump on her back is a pocket of fluid that will go down on it’s own.  We’re still not totally convinced of that theory, but it’s not causing her much pain and she’ll get more x-rays at her post-op appointment that will tell us more.  So until then, I’m just trying not to look at it too much, because to be honest it squicks me out.

Also, no, we have not yet received the lab reports confirming that Tiana had H1N1.  They sent us labs that showed she tested positive for influenza A, but there were no H1N1 test results on the sheet.  We made them aware of this, and we’re still waiting on the H1N1 culture results.  Again, we’ll see if we get them.  It seems like there’s a whole bunch of stalling going on here, and I really believe that if they could prove she had H1N1, we’d already have that piece of paper in our hands.

Now, we’ve been asked why we’re behaving like rabid badgers over this; after all, it’s over and done with, isn’t it time to move on?

The short answer is; No, it’s not.

If you want the long answer, then read on because I’ll go over our reasoning for you.  :)

The first reason is that we really feel like we haven’t been told the complete and honest truth.  Now if down the road a lab report that says +H1N1 falls into our hands, than I will eat my words and write a public apology for accusing the staff of falsifying the information they passed on to us (though I still won’t apologize for my criticism of the way they handled the situation).  Until that time though, I can’t help but feel the way I do, and it has struck a hard blow to the trust and respect I’ve had for the people who’ve been caring for my daughter over the last few years.

My thing is this…  I may not have gone to college to get a medical degree, but that doesn’t make me an idiot and you damn well better not treat me like one.  Even if I WAS an idiot, that’s MY kid in that bed, and you still better treat me with the respect that any parent in a stressful circumstance deserves.  If you’re going to play into the fears the media is spreading, and make me believe that my immune compromised daughter is about to become very ill with a deadly virus, then you’d better have some damn good evidence to back it up.  A 101 degree post-op fever does not qualify. 

The second reason I’m playing the role of rabid badger is that this brings up a very important question of immunization.  You see, once you get any strain of the flu you develop antibodies against it, and under most circumstances won’t get that strain again.  I’ve been told by a doctor whom I respect (and who happens to at least act like he respects me) not to have the kids immunized for H1N1 if they’ve already had it.  If indeed Tiana had H1N1, then we’re good, and we don’t have to worry about it anymore.  If she didn’t though, and we believe what they’re telling us, then we could forgo the immunization only to be sorry later.

Now this isn’t such a big deal for our family.  We’re all healthy with strong hearts and immune systems.  H1N1 or really any type of influenza is not likely to be anything more than an inconvenience.  Say that we weren’t so healthy though.  Say that I have someone living at home with an autoimmune disease, or something else that they may have no knowledge of at the hospital.  Incorrect knowledge of the test results could pose a much more significant risk, which leads me to my third and last reason…

We were told by several people on staff at the hospital that we had the dubious pleasure of being the first case of this sort they had dealt with at their facility.  Now while it makes me understand, and even moderately sympathetic towards, some of the major mishandling of my family, it also makes me feel like I have an obligation to those who will come after me.  It’s my responsibility to let the staff know that they can’t kick parents and patients around.  If I roll over and play dead on this issue, then they’ll believe it all worked out fine, and they won’t have learned anything when the next case rolls though the door.  However, with my stunning badger impression, I’m encouraging them to study what happened, figure out where things went wrong, and work to improve their policies.

It’s not about doing what’s easy, it’s all about doing what’s right.

Now, we’ve been told that because H1N1 is a mutation of influenza A, most places are just terming influenza A “suspected H1N1” instead of paying for the more expensive culture.  I understand that, and even respect why they’re doing it, but it’s still besides the point.  We were told that Tiana had confirmed H1N1, not suspected, so I want proof that they confirmed it.

It’s also been brought up that she still likely would have been quarantined for testing positive for influenza A.  I know and respect that as well, however; let’s call a spade a spade.  If it doesn’t change the outcome, then there is no reason to be tossing H1N1 out into the mix.  Did they think we would be more accepting of the outcome if they used the new buzz word?  The current belief is that healthy kids don’t die from the flu but they do from H1N1, so were they hoping that we would kick up less of a fuss if they scared the crap out of us? 

All I really want are honest answers about my child’s medical history.  As her mother and caregiver, I have the right and responsibility to know what happened.  I know every freckle on her body, every scar from every skinned knee, every sniffle she’s ever had, and now I don’t know if she had H1N1 or the seasonal flu; and frankly, the knowledge gap pisses me off.  It might not upset me so much if it were my choice, but they did the tests, they gave me three different answers to the same question, they forced a medication on her that she was allergic to, and they used the scare tactics.  Not only on my family, but on other parents who were questioning the new hospital policy of not allowing visitors.  They effectively silenced their objections by telling them there was a confirmed case of H1N1 at the hospital. 

Because when the truth doesn’t get the results you’re looking for, it’s perfectly acceptable to burry it and scare people into submission, right?

Also, the question still remains; why wasn’t she quarantined as soon as we informed them that she had been exposed to influenza A (or suspected H1N1)?  She remained in the general ventilation area for 24 hours after her sister was diagnosed.  If they really want to implement a system of “precautionary measures,” action should have been taken right away, not 20 (when she first started showing possible symptoms), 33 (when John and I were told to wear masks outside the room), or 42 (when they tried to quarantine asymptomatic John right along with her) hours later.

You can’t play this game halfway.  Either do it, or don’t do it, but don’t waste valuable time sitting on a fence with a picket up your ass.

Now they’re stuck between a rock and a hard place because John and I don’t roll over and play dead, and we don’t believe something simply because a guy in a white lab coat tells us it’s true.  If she had influenza A, or even suspected H1N1 without lab confirmation, then they should have just told us that.  We would have understood.  If they wanted to play the precautionary measures game, then they should have done it from the start, and been up front about it.  We would have understood that as well.  What we don’t understand is the half truths and tardy policies they tried to inflict on us.

Now, to any medical professional out there who might be following my blog; Above all else, be honest with your patients and parents in similar situations.  If you’re not, then we lose all respect for you, and if we don’t respect you than how can we possibly trust you to take care of us and our children?

If you take away nothing else from what transpired, at least learn that one simple lesson.  It can’t possibly be too much to ask, can it?

Into the Darkness

John and I met on a day just like this in November of 1997.  It was bitter cold, but the skies were clear and bright on that day in Chicago.  I don’t think either of us had any idea how much our lives were about to change.

We had known each other for about a year before we actually met face to face.  We were one of the original internet matches.  We met in a chat room for a science fiction television show, neither of us were looking for anything more than a few friends who enjoyed the same things we did; in fact I’m pretty sure an internet romance was the farthest thing from either of our minds.  To be honest though, I don’t think it ever was an internet romance.  Online we were friends, it wasn’t until a cold day in Chicago that things became more.

People snigger and say things like “Awww, it was love at first sight,” in honeyed sweet voices that make me want to vomit, and I suppose that by definition it was.  It’s not how I describe it though… 

Have you ever had your life defined in a moment?  Have you ever had a blinding flash and seen your life laid out in front of you?  Have you ever known with all certainty that you had been living for a single heartbeat in time, and that now that it was upon you, things would never be the same?

I can still clearly see him coming off the plane.  I caught the shape of the broad shoulders I’d seen in so many pictures, and knew it was him before I ever saw his face.  Then our eyes met, and I recognized that everything I had experienced, everything that had come before in my life, was just a place holder for that single breath.

It all sounds so dramatic, doesn’t it?  And it was for two people standing twenty feet apart in the O’Hare airport.  The world kept turning though, and people passed us by blissfully unaware that the world had been irrevocably changed.

It wasn’t so much that I had fallen in love in space of an instant.  Instead, it was that I had found the other half to myself, and every molecule of my being cried out in recognition when I stumbled onto my missing parts.

Yea…  Go ahead and do the “Awww” thing now.  I know you want to.  Just know that I die a little inside each time you do.

John and I have an interesting dynamic.  We don’t really have that much in common, besides our general aversion to the human race, a sarcasm that comes quick and easy, and a rather twisted sense of humor.  We’re not polar opposites, but neither are we very much alike.  We don’t like the same food, the same movies, or even the same things.  I love seafood and veggies, John could live on bread and pasta.  John likes a good slasher flick, I like to watch stupid comedies.  I love animals, John tolerates them for me.

We’re more different than alike but it works for us, and when you’re  still together and, more importantly, happy as a couple after twelve years, people start asking what your secret is.  We joke that it’s because we plan for our eventual divorce.  While John tries to reset the clock every seven years by getting us remarried, I label all of our things ‘his’ and ‘hers’ so that there’s no confusion when we split.  People think that means that we live each day working on our marriage and not taking it for granted.  It doesn't, it’s just that twisted sense of humor I mentioned above.

The secret is; there is no secret, at least not one that can be defined.  John is the other half to myself, and as much as he can drive me crazy, to leave him would be akin to digging out my kidneys and dropping them on the pavement.  I might live for a little while, but not for long and my remaining time on earth would be quite painful.

John is the assurance to my anxiety, I’m the reason to his recklessness.  We may not have a whole lot in common, but we supply what the other lacks.  On top of that, we have a tremendous amount of respect for each other, built on years of friendship and understanding.  All in all, and amazingly enough, we’re solid; in a world where not much really is anymore.

I am not afraid to walk into the darkness with him.

And we have, many times.  The beginning of our relationship, when we should have been reveling in our newfound love, we traveled through a tunnel of darkness that seemed as if it had no end.  For over two years we struggled just to be able to be with one another.  Into that darkness Tiana was born, bringing her own radiant light into our lives, and her own set of shadows.  Yet through it all, we walked hand in hand, pushing, pulling, and carrying each other when we needed to.

I make it sound so depressing don’t I?  Oh poor me, my life is so tough…  Wah, wah, WAAAAAHHH!  Honestly, I wouldn’t change a thing.  Well, maybe one or two, but not the bulk of it anyway.  The hard times are what define us, they make us strong, and teach us to laugh through the tears.  Life is what you make of it, and I prefer to let it shape me into something beautiful; not leave me a stinking lump of clay.

So, I am not afraid to walk into the darkness with him.

Then why am I so damn scared right now?  Why does this darkness feel darker than ever before?

This grief is a tangible thing, worse because I know that mine is just a fraction of his.  Tainted with fear and the inability to stop, rest, recuperate; it feels as if it’s growing into something too large to easily control.

Tomorrow we’ll know if we can start to take the time to heal, or if we step deeper into the darkness.  Personally, right now, I’m praying for the light.

Hugs,

A Comedy of Errors

I’ll warn you now that I’m going to be adding some pictures to this post that some might consider graphic.  Not THAT kind of graphic you perv!  Pictures of Tiana’s back and her healing incision.  If that kind of thing bothers you, you may want to skip the bulk of this post.

 

Gosh it’s hard to believe that only a few nights ago I was typing up my overview of the last week.  It’s even harder to believe that it wasn’t the end of the story.  In fact, I’ve totally stopped trying to convince myself that the worst must be over, and instead I’m bracing for the next impact. 

So Tiana came home from the hospital on Thursday.  Her surgeon, having apparently forgotten his promise from the night before, tried to hedge her in for another day, until John threatened to check her out AMA.  They managed to get all of their ducks in a row and discharge her instead.  It was a good thing too, John only just managed to make the drive home before he was hit with the plague.

Yes, we’re just calling it the plague now, since no one can really decide what it actually is.  The hospital in Racine says Influenza A, Shriner’s says Influenza A or H1N1 (or nothing at all) depending on who you ask, and we still haven’t gotten the lab reports in writing like we requested.  No shocker there now is it?

One of the best parts though, something that would make me laugh my ass off if I didn’t already want to choke someone, is that we received a phone call from the Racine Hospital on Saturday morning…  There was a lab mistake (I’m beginning to think that all hospital labs are run by incompetent idiots) and it turns out that Jenna does in fact have strep.  Yea, you read that right.  Jenna had strep and the flu, which is probably why she was so sick.  Lucky kid huh?  Though why it took them four days to figure it out, is totally beyond me.

That likely explains Tiana’s sore throat too, which didn’t last long because the IV Antibiotics would have killed a run of the mill strep infection pretty quickly.  Shriner’s never swabbed her throat though, so we’ll never know.  They just assumed she had the plague…  Um, I mean H1N1.

So, deadly diseases aside, today was the day to change the bandage on Tiana’s back.  Actually, yesterday was, but she kicks up such a fuss about the tape they use that we put it off for a day.  Neither John or I were feeling quite up to listening to her whine yesterday.

As soon as we pulled off her shirt I felt my stomach drop.  I met John’s eyes and I’m sure they reflected the horror in my own.  We were looking for signs of infection, but instead we found a large lump at the base of Tiana’s neck and to the right of her incision.

To me it almost looks like the kids I’ve seen who popped their rods, but Tiana can no longer pop a hook like she could with the grow rods.  If a rod popped, the screws would have to strip out of the bone.  That’s so not good.

We took some pictures, and called the resident on call at Shriner’s for the weekend.  From what John described, he says he believes it’s just a build up of fluid.  John asked if we could send him the pictures and get his opinion after he’d seen them.

So we shot them off to him, and he stands by his original diagnosis, but John and I aren’t so sure because we can feel something hard just under the surface of the lump.  He said not to worry (fat chance), that he’s seen it before, but that he would make sure Tiana’s surgeon sees the pictures and that his nurse will call us in the morning.

Great, something else to obsess about for another day.

Honestly, I’m beginning to think that if things ever go back to normal, John and I will find life downright boring.

I’ll fill y’all in when we know more, until then…

Hugs,

Can You be too Careful?

Those of you who know me well, know that the last week and a half have been pretty difficult for my family.  On October 17th, John’s dad passed away unexpectedly.  It was a devastating loss for us.

On Friday the 23rd, we flew to New York to attend the services for Pop.  The church was packed!  I’m not sure I’ve ever seen so many people attend a funeral service, except maybe on television.  Everyone from the mailman to the guy who works at the corner deli was there to celebrate his life, and all considered Pop to be a close friend.

It was an amazing thing to be a part of, and also a very heart wrenching experience.  The world has lost a great, great man.

The Sunday after the service, we flew home only to check Tiana in at Shriner’s in Chicago for her posterior spinal fusion (with instrumentation).  The surgery was performed on Monday, and took a little over seven hours to complete.  My girl came through with flying colors, just like she always does.

While she was in surgery, John commented to me that this surgery hadn’t been as terrifying as some of those that had come before it.  He thought that maybe he was just numb, and I agreed.  I likened it to my cup already being too full, I just couldn’t add anymore, there was no room for the fear and anxiety I would have normally been feeling.

Wow, was I wrong.

My mom spoke to me a couple of hours after Tiana had gone into surgery to let me know that Jenna was running a very high fever.  It had lowered a bit with ibuprofen, but it wasn’t remaining stable.  Throughout the day, Jenna continued to have a temp that ranged from nearly normal to very high, and as soon as Tiana was out of surgery I headed home to check on my other baby.

When I arrived in Racine, Jenna was a little warm, but nothing high enough to write home about.  I took her temp twice at the hotel where she was staying with my parents, and the highest reading I got was under 101.  I decided that she would be fine for the night, and left her there to sleep while I went home. 

Just two hours later, as I was settling into bed, I got a phone call saying her temp was over 104.  Panicked, I didn’t even change out of my pajamas, but threw on a pair of shoes and ran to the hotel to get her and take her to the ER.

At the hospital they filled her with fluids, and managed to get her temp down to something a little less scary.  They also screened her for the flu, and the test came back positive for Influenza A.

I’d had quite the scare.  Worrying about two kids at once, who are in separate states, has got to be a mother’s worst nightmare; or at least it would be if you were ever in a situation where you could imagine that would happen.  I made Jenna sleep in my bed with me, and I kept my hand on her forehead the entire time, alert for the slightest rise in temperature.

I’m not ashamed to admit that I cried a little bit too.  It all felt so overwhelming.  I wondered how much more I could deal with, and I was pretty confident that I was reaching a breaking point with the level of sadness and worry that I’d felt over the last week, not to mention the lack of sleep and the bad dreams I've had since Pop died.

But hey, trouble comes in threes, so it had to be smooth sailing from here on out…  Right?  Right?!?

Not so much.

Being the good, responsible, concerned parents we are, John immediately reported Jenna’s virus to the staff at Shriner’s.  They were sympathetic, but only mildly concerned, and for the next 24 hours, life stayed on track. 

Tuesday evening, I arrived to take my shift with Tiana.  John and I like to trade off every night so at least one of us is getting a decent nights sleep in a real bed.  It limits the exhaustion that quickly snowballs if you have to stay on those horrific torture devices they call “parent beds” for too long.  John and I talked for a few minutes, and he headed home. 

Tiana had been coughing a bit when I arrived, and her temperature was elevated a little, but that’s not all that unusual after a surgery like she’d had.  As the night progressed, the fever went up a small amount, but she never felt hot to the touch and since the temp display was in Celsius I wasn’t sure how high it actually went.  Her cough pretty much stayed the same though.  At around 10pm, they decided to put her back on an oxygen mask because as she was sleeping she wasn’t taking deep enough breaths to keep her oxygen saturation at an acceptable level.  Also, completely normal for the surgery she had.  Simply put, it hurts to breathe after they mess with all of the muscles and bones in your back.

After she had been on the oxygen for about an hour, and complaining about it the whole time I might add, a nurse came in and asked her how she was doing.  She said her throat hurt from the mask, and asked if she could please take it off.

Wrong thing to say kid…  Wrong thing to say…  A bomb blast would have gotten a less subdued reaction.

Immediately the nurse was on the phone, to whom I’m not sure as we later learned that Tiana’s doctor was never notified of the situation, listing off her symptoms as a sore throat, cough and high fever.  Hmmm…. do those symptoms sound anything like something you’ve heard about in the news?  Everyone was sure she had H1N1, especially considering that her younger sister had just been in the ER for the Flu.  Of course Jenna had Influenza A, not H1N1, but that was apparently just semantics.

They made sure that I knew how dire the situation was.  She has a compromised immune system from the surgery after all, and with her sister having been so sick, it was likely to hit Tiana like a ton of bricks.

They moved her to an isolation room to keep her from infecting any of the other patients with the deadly virus they were sure was taking hold of her body, and I slipped outside and sat on a patio for awhile; snippets of news reports I’ve heard and read flashing though my mind.  I totally broke down out there in the cool, quiet October night.  I cried, I begged and pleaded with God and anyone else who was listening, I felt as if my soul had snapped in the middle.

“You already took Pop,” I muttered over and over, “You can’t have her too.” 

I have never been so afraid in my entire life. 

I sat there for a long time, crying so hard my breath came in gasps and my face burned.  I called John and cried, I called my mom and cried, and then I called John and cried some more.

And all of it… All of it was over absolutely nothing, like I’m sure any health care professionals who are reading this already realize, but I was not to learn that for another 12 hours.

The next morning her doctor came in, furious when he learned what had transpired overnight with out his knowledge.  To speak plainly, he was pissed.  He let us know that all of the flu symptoms she was exhibiting were also extremely common things that occur after a posterior spinal fusion, and that they had over reacted based on the fact that Jenna had the flu; Influenza A remember, not H1N1.  I asked him about the high fever, and he informed me that the highest fever she ran all night, when translated into Fahrenheit, was just a little over 101, a perfectly normal post-op temp.

They took a sample to test Tiana for the virus, but in the meantime decided that John and I needed to wear masks outside of the isolation room as a precautionary measure since we both had been exposed to Jenna.  This was at about 11am on Wednesday morning…  Wait… They were informed that Jenna had the flu at about 2am Tuesday morning, if we do the math quickly we come up with the 33 hours it took them to decide on that “precautionary“ measure.  John and I were understandably stumped.  Why now?  The doctor had just informed us that Tiana’s symptoms were just as likely to be from the surgery as they were to be from any form of the flu.  Oh, I get it…  Guilty until proven innocent.

At this point Tiana’s starting to get a little freaked.  Everyone coming into the room looks like they’re getting ready to take her into surgery.  She asked me several times what was wrong with her, and if she was going to be OK.

She was ready to be discharged from the PICU, but they didn’t want her in the general ward until they knew what was going on with her.  So we waited on the test results…

Tiana’s fever broke, and we waited…
They pulled her catheter and IV’s, and we waited…
She got out of bed for the first time after her surgery, walked around the tiny isolation room, and we waited…
She watched two DVD’s worth of Animaniacs and three Futurama movies, and we waited…

Finally they decided to just take her down to the ward.  They said the results weren’t back yet, but that they would just put her in an isolation room to be on the safe side.

So downstairs we went, but the room wasn’t quite ready yet.  As we were standing there waiting for them to figure things out, one of the nurses on the floor asked why she was going into isolation.  The nurse who had just told us that they didn’t have the results back yet said they were taking “precautionary measures.”  To which the floor nurse promptly replied that the results were back and they were negative.

John and I looked at each other, and then quickly turned to the nurse who was rapidly shaking her head no at the other who had spilled the beans, and demanded to know what was going on.  She stammered something about preliminary results, and tried to make a get-a-way through the nearest door.  Unfortunately for her, she was still pushing my child in a wheel chair, so I had cause to follow her.

Once cornered in the room she told us that even if Tiana’s results were to come back virus free, they would still keep her in isolation until she was discharged as a (can you guess?) “precautionary measure.”  It seems that with the H1N1 panic, you’re guilty even after you’re proven innocent.

Hearing that, Tiana started to cry.  She wanted to go out to the mall where they were having pet therapy, she wanted to pet the dog.  She wanted to be able to participate in the craft activity on Thursday, she DID NOT want to be cooped up in a tiny little room any longer, especially if she was NOT SICK!

At this point her doctor entered the room and asked what was going on.  A brief synopsis was offered by the parties of each side.  To his credit, he shook his head, sighed, and promised my little girl that if they hadn’t released her from her prison by the next morning, that he would let her go home a day early.  I guess he believes that her improved mental state will out weigh the benefits of an extra day of in-hospital post-op monitoring.  Personally, I agree.

I left shortly after that, it was probably a good thing because I was already mad enough to spit on someone, and the situation degraded even further after I was gone.  They tried to confine John to the room with her, even though he is completely asymptomatic, as a “precautionary measure.”  For those of you who have the pleasure of knowing my husband, I’m sure you can guess that he was having none of that.

A doctor, who is not Tiana’s surgeon, came in and told John that Tiana HAD in fact tested positive for H1N1.  He said the negative result was an error, but at this point we’re not really buying it… 

First of all, They lied to us at some point in time saying the test results weren’t in, when they were in fact there.  Even if they believed they were erroneous, they lied about it, which makes anything they say after that automatically suspect. 

Second, this is the second test result that they’ve made a mistake on in as many weeks.  Either they need to get better equipment or someone is spitting in her samples. 

Lastly, I’d like to remind you once again that Jenna wasn’t diagnosed with H1N1, Jenna has Influenza A and, two days later, is already over all of her flu symptoms (which further supports the conclusion that she does not have H1N1).  What are the odds of two kids in the same family getting different strains of the flu at the same time?  John requested a copy of those results, let’s see if he gets it.

Now the real kicker here is that Tiana was never in any real danger.  They started her on TamaFlu right after they began to suspect she might have a virus, and her temp never hit a dangerous level.  She does have a suppressed immune system right now, which makes it a little more difficult to fight off infections and viruses; however, it is not critically so, and with the aid of the TamaFlu, she will likely have an easier time getting over it than Jenna did without medication.

You keep hearing scary stories in the news about kids with H1N1, but let’s lay out some facts here…

So far the number of deaths attributed to H1N1 since March is just over 1000.  That breaks down to about 125 a month.  The average number of deaths each year attributed to the seasonal flu is 36,000.  That’s 3000 a month.  Looking at those stats, which one would you rather get?

Another thing we keep hearing about is that children with no apparent underlying health conditions are dying from H1N1.  What the media isn’t reporting is the “apparent” part.  On cursory examination most of these kids look healthy, but on autopsy they’re finding that the vast majority of them have undiagnosed health problems.  Think about it, how many people are screened for a heart condition if no evidence of one exists?  They’re not, it’s not until a problem occurs that they get checked.  Then they find that they might have been living with a problem for many years without even knowing it.  We heard this a lot about heart conditions with our HOS support group.  Most of them never knew there was a problem until something went wrong.

So was there potential for Tiana to get sick?  Yes.  Was she going to die?  No.  You see, since she’s had her condition since birth, we know for a fact that she has a strong, healthy heart, liver, and kidneys.  She was screened for all of those things when they were trying to figure out what her birth defect was.  So H1N1 would be a nuisance for her, nothing more.

Now I know you’re thinking about the other kids in the hospital because I am too.  Honestly, I would not care to have the death of a child on my hands.  However, these kids can succumb to a multitude of infections that are passed from one person to the next, along with other colds and viruses.  All of them have the potential to hurt them as much or even more than H1N1.  The solution to minimize the risk is the same as it’s always been before the media decided that H1N1 was a killer.  Proper hygiene is the key, not putting prison bars on their hospital room doors.

At some point you have to ask if you’re hurting more than you’re helping.  They kept talking about “precautionary measures,” and saying “you can’t be too careful,” but you can.  Shriner’s has always put the emotional and mental well-being of the kids as high as their physical well-being.  Sadly, in the hysteria over a new buzz illnesses, they lost sight of that today.  It’s disappointing to say the least.

The good news is that they corrected Tiana to a 30 degree curve, her back is looking straight and beautiful.  She’ also recovering in her normal—faster than the speed of light—fashion, and should be home tomorrow.  I want to thank everyone for your support, prayers, and love over the last two weeks.  Our family couldn’t have made it through all of this without our awesome network of friends and family.  We love you all!

Dear Pop,

 

This weekend has been so hard.  I never really imagined that your passing would affect me this much.  I knew I’d be sad to lose you, but it’s not like I had the opportunity to see you very often, to be as close to you as I’d have liked…

Even so, I find myself feeling like I’ve lost someone very dear.  Part of it is sadness for what John has lost, you were his best friend you know, but most of it is my own grief.  I guess I loved you more than I knew.

You had a way of doing that to people though, didn’t you?  I think I would be hard pressed to find someone you knew, who didn’t call you friend.  You just had a way about you that made people feel special for knowing you.  Everyone is saying “he was like a father to me,” or a brother.  No one just calls you friend, because you were never just a friend; you were so much more to so many people.

I remember the first time I met you.  John took me to one of his pool games so we could meet before word got out that he had a strange woman visiting him.  I was so nervous, but John told me that you were great, and that we’d love each other.  I wasn’t so easily convinced…  What a mess that whole situation was.  John had just broken off his engagement, I was barely separated from my ex, and had two kids I was bringing into his life.  You would not have been out of line if you’d told me to get my ass back on a plane, go back to the backwater tundra I came from, and stay the hell away from your son.  Instead you hugged me, you flirted with me in that incorrigible way you have that is so charming, you made me feel pretty, and special, and comfortable.  During a time in my life when everyone was making accusations and demands, you just accepted me into your family with no questions asked.  I loved you immediately.

You told me years later that you could tell by the look on John’s face that night that I was something special, and that was all you needed to know.  I just wanted to let you know Pop, that your instinct was right.  I might not be the greatest catch on the planet, but I love your son with every ounce of my being, and I’ll be here for him until the day I die.  You don’t ever have to worry about him, I promise I’ll take care of him for you.

Thanks, by the way, for that son of yours.  You brought him up to be an incredible man.  He’s so much like you, his personality and more importantly his values.  He puts the kids and I before everything in his life, and takes care of us just like you took care of him.  Sometimes, when he does things that are so incredibly selfless it makes everyone stop and stare, he’ll simply say “It’s what my Dad would do.”  You were a great role model for him, and I thank you for that. 

Speaking of taking care of family, you know your job’s not done, right?  The way I see it, your grandkids now have a personal angel taking care of things on the other side for them.  Tiana goes in for surgery in a week, and I expect you to be there making sure everything goes smooth.  I won’t get to see you like I had originally planned, and Jenna is sure going to miss having you here to take care of her while Mom and Dad are at the hospital with Boo, but if the trade off is having you watch over my baby while she’s sleeping…  Well, I guess I can deal with that.  In fact, it’s about the only thing in this whole crappy situation that seems even remotely OK.  I trust you to take care of my little girl no matter what happens, and for the first time in a long time I’m not scared.  I know she has you looking out for her, and that you love her as much as I do.  What more could I ask for?

Even knowing that, I still miss you already Pop.  I miss that you’re not looking at the proofs for Alexi’s senior pics right now.  I miss the visits that we won’t get to have, the graduations and weddings we won’t be able to share.  I miss a future with you, that I just assumed would be there.

Still, I am eternally grateful for every second I had to spend with you.  For your influence on my life, and the lives of the people I love the most.  Thank you for the precious time you shared with us.  I would not trade those special memories to be free of the sadness I feel today.

I love you Pop, and I only hope that you received as much as you gave to the world.

You will always be remembered.

Broken

For the first time in a long time, I was so upset and angry today I wanted to throw things. The last time that happened I was aiming at someone. Today though I’m just mad at the universe, and since it’s really hard to hit the universe with a dinner plate, I managed to restrain myself.

Tiana had her post op appointment at Shriners today, and as I’m sure you’ve already guessed, we got some bad news.

Do you see it? Maybe this will help…

If you’re still not sure what you’re looking at, let me explain...

The two bright white stripes are the rods that hold Tiana’s spine as close to straight as they can get it. At her last surgery in May, they got her down to the straightest she’s been in four years, and that was a thirty-six degree curvature.

After so many years of adjustments and with her advancing age, the doctor found that her spine is starting to get stiff, and that they wouldn’t be able to adjust her anymore. They were going to leave her for about a year and then perform the final fusion.

A year of freedom; a year of not having to worry about an upcoming surgery. We were all pretty happy, and looking forward to letting ourselves relax for a bit.

Well, today a year just became three months.

A couple of weekends ago Tiana started complaining that her back hurt. The rod hooks at the top of the spine can sometimes become dislodged, and it’s very noticeable when they do, we took a look at her back but didn’t see anything out of the ordinary. So we told her she should get her butt up off the computer and do something, and that she’d probably feel better.

Today at the doctors they found that her pain wasn’t just from stiff muscles. It turns out that her rods have broken. That’s right, not one, but two of the titanium rods, snugged up against her spine, snapped under the pressure.

Ok, yea, I’m probably being a little dramatic with my description, but I’m still pretty upset, so cut me some slack if you’d be so kind.

Here’s a close up of the damage (click for a larger view):

And because I know you’re not all doctors, and because it took me a minute to catch it even though I see her x-rays all the time, a visual aid:

The top circled break is pretty self evident, but it took me a bit to understand that the bottom-left pieces are actually supposed to be attached to one another.

Kinda makes you wince, doesn’t it?

The good news is that even without the support of the rods, her back is still holding at about a forty-five degree curvature. The other good news is that there’s not a whole lot of movement in the broken portions when she moves. That gives us a little time to prepare for surgery. If those two things hadn’t been on our side today, Tiana would have probably been admitted to the hospital immediately. (If that’s actually a blessing. Part of me is wondering if maybe it would be better not to have the extra time to worry about it.)

As it stands, they’re letting her wait until after her birthday in September. So the end of the summer won’t be ruined for her, she’ll get to start school on the first day and see her friends, and she’ll get to celebrate her birthday without stitches in her back.

The bad news is that none of us were prepared for this, and I don’t know how John is feeling about it right now (we haven't had a chance to discuss), but I personally would love to throw myself on the floor and have a grand ole’ tantrum. I won’t, just like I didn’t throw the plate earlier, but it sure sounds like a fun way to let off some steam.

Besides, if I did, John would feel compelled to video tape it and post it on youtube. :)

Anyway, I wanted to get the pictures up, and the word out to our family and friends. I’ll let you know how we’re doing in a few days once we’ve had some time to process things.

Hugs,