Sunday, January 31, 2016

Recovery Continues

Happy to be Home
Well, we made it home on Friday.  He's still pretty swollen, but he's also been happy since that really rough time on Thursday night.  I'll take that.

We also had some "fun" with heart rhythms and labs.  You know, 'cause we had to keep things interesting.

Turns out the heart rhythms were nothing that cardiology was really concerned about, especially given that he'd just had surgery. He was having some possible PVCs.  I know you know what those are.  I do, too.  They're long pieces of plastic pipe, like what we used to build his frame for his toys over his bed, right?

Actually, they're "premature ventricular contractions," or where the lower part of the heart starts the beat just a little bit too early.  Well, they did an EKG (electrocardiogram) and some labs just to check things out.

And as often happens, in looking for one thing, another pops up.  Turns out he's got some higher levels of creatinine, a substance which may indicate trouble with his kidneys.  Plus, there was a thought that while the EKG didn't show any PVCs, it might show a borderline Long QT syndrome.  Fortunately, again, cardio didn't think so.  But we'll be sure to ask about it in a couple weeks when we visit.

Plus, his ENT is just a tad concerned about his ability to clot given that he didn't want to do that during his ear surgery in December.  Since he's got another one, much more extensive one, coming up March 2nd, Dr. ENT wants us to follow up with hematology prior to then.

 Our awesome attending on the floor got in touch with hematology and got us an appointment for the same day as our cardio follow-up in two weeks.  And we have orders to get more labs done this week.  Poor kid is turning into a pin cushion.

Now, I just have to make appointments with dental and plastics for follow-up regarding his surgery.  It felt a bit like a three-ring circus as we tried to figure out everything and line up all the ducks to try to get out on Friday.  But we did it!

And speaking of his surgery, I think we've come up with a new retirement plan for William and I.  See, I found out that Peyton Manning had a cleft palate as a child.  When he was about 8, he had the very same surgery that Aaron had on Wednesday.  So I figure, Aaron's already ahead of his timeline by three years.  So we're planning on a successful NFL career to support us in our old age.  I mean, it could work, right?
Loving music therapy, playing the guitar

Anyway, recovery is coming right along.  He finishes his antibiotics today, and we're also changing from giving his pain medication on a schedule to just when he needs it.  The swelling is starting to come down.  He can open his eye all the way and the bridge of his nose is now well-defined.  He'll still have to wear his brace for several more weeks, but he doesn't even seem to notice that. He's back to chewing on everything and acting pretty much like his happy self.

Being happy doesn’t mean that everything is perfect. 
It means that you’ve decided to look beyond the imperfections.
Author Unknown

Thursday, January 28, 2016


It was a rough night from a pain standpoint.

He went to sleep fairly early, but about midnight, I heard something.  The nurse was in here, trying to help him, but he was just crying.

Sobbing and sobbing, inconsolable, in so much pain.

We tried hand massage, head massage, obviously sucking on something was out, as was back rubs because he would have had to lie on his sore face.

We had pain meds on board, but oh, he hurt.  We were trying to avoid ibuprofen because of his low platelets, but decided that something had to be done.

So now we're piggy-backing both Tylenol and ibuprofen and he's resting better.

The doctor wants to keep us one more night just to make sure it doesn't repeat.  The swelling should peak sometime in the next 24 hours.  He's resting now, probably the best medicine.

On the positive side of things, his breathing has been great.  At least we're not having to worry about that this time.

My poor little guy.

To hurt is as human as to breathe.
J. K. Rowling

Wednesday, January 27, 2016

Surgery Week/Day

I didn't realize how stressed I was before this surgery, or how exhausting that stress was.  
It has been a busy couple of days.  I tried to get everything sorted and put together.  Monday we went in for labs to make sure we knew where everything was.  I mean, he bled a LOT after a little nothing surgery in December.  This was more involved and if there was going to be a problem, we wanted a heads up.  They all came back pretty good, at least for Aaron.  

In an effort to curb infection, the hospital asks that patients have a bath the night before surgery with clean jammies and bed linens.  Aaron's not real fond of baths, not real fond of haircuts, and he needed both.  So I figured that's what we'd do on Tuesday afternoon/evening and we'd be good.

Except then I got a call Monday late afternoon from Shriners.  He's due for a new wheelchair and we had an appointment for the end of April for a fitting and then the beginning of August for pick-up.  Shriners had a last minute cancellation for Tuesday afternoon, and did I want it?  

An hour each way, plus a two hour appointment adds in four hours that I hadn't planned on.  Then I had to factor in the exhaustion that always seems to accompany these appointments and drives.  But still, a new wheelchair, one that would fit him and his equipment so much better three months earlier . . . 

Yep, I took it.  And it was quite eye opening.  He doesn't really sit that well in his chair.  I told them we needed an incline because it was the only way to really help him be comfortable.  The therapist suggested that might be because it wasn't fitted right.

Dancing in the simulator

They put him in something they called a "simulator" and my kid sat up, almost completely upright, for over an hour!!  At least when he wasn't rocking out to the music.  No scooting down, no trying to slide out.  And he had fun!  And even took a little nap.  You know of course every time I tried to get video of him singing he clammed up.  Oh, well.  You'll just have to imagine it.  But I'm excited about how this can improve things for him.

It will be a little bit of an adjustment as we learn to work with it.  It's much heavier than his current one, so I'll have to figure out how we're going to heft it in and out of the car, especially when I'm on my own.  But I still have three months to figure that part out.  

So then it was get home, try to catch my breath, haircut, bath, clean bedding, and bed for both of us.
"Are you sure it's a good idea to be awake
so early?"  (notice how much shorter his
hair is)

Fortunately, he wasn't first on the schedule today.  We checked in at 8:45 instead of 6:00.  Blessing.  He still thought it was too early.

It took a little while, okay, quite a while, as we went over his recent labs and there were several questions about the bleeding and then re-admit after his last surgery.  Then he was off.  I was told it would be about a two and a half hour surgery.  

Heading back to the OR

First was dentistry who cleaned and checked all his teeth.  Then the plastic surgeon who fixed his cleft and the orthodontic who made the impression and the splint that he will wear for the next six weeks.  Dentistry came about 30 minutes into it, right on time, and said his teeth looked amazing.  Then the surgeon showed up about 30 minutes later saying he was done!  

I couldn't believe it.  I'll take a 2 1/2 hour surgery that only lasts 60 minutes over a 20 minute surgery that lasts almost 90 any day.  
Time to wake up (again)!

This is about 2 hours post-op and the
swelling has already started.

When I got back to see him, he was just waking up, although he wasn't sure that's what he wanted.  He was more than content to just keep snoozing away.  There wasn't much swelling, but we were warned that it would change.  By mid-afternoon, it had already started, and tomorrow will be even worse.

We both took naps once we got to the room and right now, he's doing pretty well.  He's not sure what to make of the plastic guard in his mouth, and keeps trying to find the hole he's always stuck his fingers and tongue through.  So far, his pain is well controlled.  

I guess we'll see what tomorrow brings.  Hopefully, it's home.

 Tough times never last, but strong people do. 
Robert H. Schuller

Sunday, January 24, 2016

Getting Ready for Surgery

Just a little tyke here, but you can
see the two clefts, one in his lip, the
other in his gum. 
Aaron's first of three surgeries is scheduled for this Wednesday.  This one is to his mouth, the next two to each of his ears.

When he was born, he had a cleft lip that extended into his gum line.  They fixed the lip when he was 14 months old.  Now it's time to fix the alveolar ridge, or the bone that your upper teeth fit into.  I'm a touch nervous.

Of course, this is all depending on him staying well.  And that makes me antsy as well.

Michael and Matthew have been sick this week.  Matthew not as bad, but Michael has had a really rough time.  It started late Tuesday night when he knocked on our door and rasped out, "I can't breathe."  It was so bad that William asked who it was and what he'd said.  I jumped out of bed, hollering at him to get into the bathroom and turn on the hot water.

He was a mess.  Massive retractions (sucking skin in under his collar bone and ribs) and mottled skin.  We got him breathing a little better, stuck a pulse/ox on him and he was at 91%,  Not so hot for a kiddo who doesn't usually have heart/lung issues.

So being the medical household we are, I stuck oxygen on him and we took a trip down to the ER.  They were all a bit surprised at the O2.  Oh well, that's how we roll around here.  We had it, he was struggling, here we go.

Anyway, they gave him some steroids to help him breathe and did a viral panel, except the tech messed up.  So we don't know for sure what he had, or what Aaron might get.  But given that his symptoms are essentially the same as Andrew's were two years ago, my money is on RSV.

Yep, that one that sends shivers of fear down the spine of any medical mom.

So like I said, surgery IF Aaron stays well.  We're trying.

And we've been hedging out bets in other areas, too.  You know when you made sure you wore your lucky socks on test days, put on and tied your shoes exactly the same every game day?  Well, we have our rituals, too.

When Aaron had his ear tubes and everyone was a bit nervous, I reassured the anesthesiologist that he'd be just fine because I had my hospital bag all packed and in the car.  And he was!  At least until we were almost home.  Hey, we tried.

This time they're keeping him overnight, at least.  But I spent Saturday making several casseroles to put in the freezer so they didn't have to worry about dinner.  Which means (I hope) that they won't use any of them 'cause we'll be back home by mid-day on Thursday.  Tried to clear the schedule, booked my own physical therapy appointment for Saturday, you know, everything I can think of.

And my goofy kid?  What's he up to?  Well, this morning he desatted because he pulled off his oxygen, and I had to work to get it out from between his teeth to reattach it.  And the whole time he was laughing at me.

I'm not sure how he's going to handle being really swollen and wearing a mouth guard for the next little while.  But if I know my kid, he'll do it with grace.  Somehow, he always does.

And if you've got a little time, check out this video that another young man with his own set of challenges made for Aaron. He has a real talent for the piano and also for optimism.  It touches my heart that so many people pray for him.

An inexhaustible good nature is one of the most precious gifts of heaven,
spreading itself like oil over the troubled sea of thought,
and keeping the mind smooth and equable in the roughest weather.
Washington Irving

Tuesday, January 19, 2016

This Life is Not Normal, Not Really

 Aaron went in for the CT scan of his ear last Thursday.  Yeah, I know I said it was Friday.  Thank goodness the hospital called to do registration ahead of time.  We totally would have missed it.  Yep, I'm good that way.  We won't go into all the other goofy things I've messed up, forgot, or whatever.  Aaron might be looking for an upgrade in the mommy department soon.

Anyway, the CT itself went well.  I had my doubts.  Apparently, so did the tech.  I mean, he only needed to hold still for 3-5 seconds at a time, but sometimes even that's asking too much.  But the big silver ring around the tube seemed to capture his attention.  And while he was studying that, the tech went to work.

That was the easy part.  The hard part was reading the results when they went online on Saturday.

See, here's the hard part about crazy, weird, medical life becoming your norm.  You forget that it's really not normal.

One of the several images they captured.
Right side is on the left and vice versa.
Looking down through the top of his head.

Aaron's ears are a mess.  Really, a big mess.

He does need surgery, and not just on the right, but the left side, too.  Kinda suspected the right, not too surprised by the left.  Symptomatically (that's the stuff we see everyday) his right ear is the worst, so we're going to start with that one.  On the imaging, the left wins for sickest, so we're definitely doing that one too, just later.  They don't want to do both at the same time.  I don't know why.  Really, I don't.  But I'm going to trust the doc knows more about this than I do.  Right now the first one is scheduled for April 5th.  Happy Spring Break to us.

Anyway, it's called a tympanomastoidectomy.   Really big word for "open up the bone behind the ear and suck all the garbage out," more or less.

Funny, that wasn't what I  struggled with.

It's the part that we can't fix, that I didn't suspect, that's the hard part.  Aaron has failed every hearing test he's ever had.  That's why he's got a hearing aid.  But we thought it was because his ear canals were tiny, essentially collapsed.  And that plays into it, but we found out that's not all.

Remember learning about sound waves and hearing in school?  The three tiniest bones in the body?  We called them the hammer, the anvil, and the stirrups.  Kinda close.  It's really the malleus, the incus and the stapes.  They connect the ear drum with the oval window, which then leads to the semicircular canals and the cochela.
Or at least for most of us, that's the way it works.  

Aaron's doesn't go quite that way.  Out of those three tiny bones, two on the right, and all three on the left are either malformed or underdeveloped.  The oval window is obscured on both sides.  His semicircular canals have minor impairments, and his cochela only goes around almost twice on one side and twice on the other.  Betcha didn't know that it's supposed to go around 2 1/2 times.  I didn't know before Saturday.  

Out of 12 different entries per side (and that counts those three bones as one), Aaron has normal findings on two:  his round window and his internal auditory canal.  That's it.

And I guess that's what's thrown me for a loop.  He will NEVER hear well. It won't matter how much his ear canals grow.  It won't matter if we can get rid of the infection, although we really need to just for his health.  He won't hear "normally."  

It won't affect life the way he knows it.  He's still happy, laughing, playing.  He smiles, loves back rubs, and fights going to sleep.  But for this mama's heart, it hurts.  It's a reminder that his body doesn't work "right."  He's fragile, he breaks easily.  Even the tiniest bones aren't "right."

Saturday and Sunday were really hard days.  Distance has provided some perspective, and I'm doing much better now.  He's been using his speaking valve and growling and laughing at his brothers.  He's gone to school.  

He really is doing just fine.  And so I am, too.  I just need to remind myself, it's all okay.  In fact, it's more than okay.  It's good.

"The flower that blooms in adversity is the most rare and beautiful of all." 
- the Emperor in Mulan

Sunday, January 17, 2016

Too Many Angels

Too many angels, too many empty arms, too many aching hearts.

It seems to come in waves.  Maybe we're just more aware.  But lately, the last six weeks or so, there have been so many little ones going Home.

And it feels like many are older ones.  Children who've made it past that magic "1st Birthday" milestone.

It's weird.  I almost feel like I'm channeling my grandpa's spirit.  I remember him sitting at the table listening to the obituaries read over the radio.  "Yep, knew him.  Yep, went to school with her.  Yep, he was a good guy.  Why am I still here?  How come everyone else is gone?"

Except he was older, much older.  And we tried to tell him we still needed him.  I don't think he believed us.

And I ache as my friends' children go on ahead of them.  And I fear.  And it's hard.

Today sweet Harlie gained her angel wings.  She was found unresponsive; they believe she'd had a seizure.  For almost two weeks they have fought for her.  But today she was moved to the Butterfly Room to say good-by.  

Harlie is ten.  She's trached and vented.  Her mom has been there, holding my hand for our whole journey.  Aaron was born just before her fifth birthday.  Can I tell you what a blessing, what comfort I found in this beautiful girl and her mom?  She was almost FIVE!  Five years longer than we were told she could live, than Aaron could live.

And almost five months later when he was trached and put on the vent, her mom was there for me, telling me it was not only possible, but good.  That life could continue and be happy and fun.

And now she's gone.

Through her ten years she touched so many.  And even in death, she'll continue to help as she becomes an organ donor.

But right now, this moment, this day, for a long, long, long time, it hurts.

Today in church, as the Sacrament was being prepared, the organist played a portion of a hymn, not the one we sang.  As the words registered in my mind, I started to cry.  "Death unlocks the passageway into eternity."

Fly high, precious child.  Run, skip, jump, sing and laugh, breathe.  Break free from the tattered body you inhabited on this earth.   You are loved, you are missed, you are valued above price.

“There are special people in our lives who never leave us …. 
even after they are gone.” 
– D. Morgan

Tuesday, January 12, 2016

Special Needs Parents Sailing into the Fire

We've had some boring around here.  That's good.  We like boring.

Aaron went in a week ago for his post-op appointment.  You know, the same day surgery that landed us back in the hospital for a week?  Yeah, this kid has some interesting ideas on the length of a "day."

Well, we had hoped that the surgery would fix things.  Hoped but not expected.  Well, good thing we didn't expect it.  I've mentioned before I really good at denial.  I was hoping the stickier stuff in his right ear was just wax and old blood, but didn't really think so.  It's not.  It's continued drainage.

So on Friday we'll get a CT of that ear and the structures behind it, and probably look at another, more extensive surgery.  The good news is that it looks like it's just the right ear.  His left ear has never been infected when the right ear wasn't, and often it's just the right ear.

So onward and upward.

In other news, Matthew has been part of a Musical Revue this past weekend.  Man, these kids can sing and dance, make you laugh and cry.  Have I mentioned I love music?  The them was "Be the Hero of Your Story."

So many of us sail "Into the Fire" because we must.  Our children need us to take up the fight for them.

Mountains surround us, walls block our way, there's terror, fire, valleys, and lightning.  But someone has to face it, rally and rush in for these precious ones.

And as their parents, we've been chosen and accepted that challenge.

We fight for treatment, for IEPs, for their rights.  We fight to keep them alive, to give them words, to give them wings.

We will be touched, we will be burned.  But our scars are battle scars, and our children are worth it.  Not only our special needs children, but their siblings who learn courage and creativity and determination from us.

And we will win.  Because we must.  

Here are two of my favorites from the show:  "Into the Fire" from Scarlet Pimpernel and "When I Grow Up" from Matilda. (I claim the guy on the right in the thumbnail.  Isn't he great??)

And if it's not right, you have to put it right.
But nobody else is gonna put it right for me.
Nobody but me is gonna change my story.
Sometimes you have be a little bit naughty.

Sunday, January 3, 2016

When You're Told Your Child Will Die...

When you're told your child will die, your whole world shifts.

You know the song "Where Were You When the World Stopped Turning?"  Well, that describes it pretty well.

You look outside and wonder how everyone else seems to be carrying on, normal life, the little things, and they don't realize what has happened.

And other things change, you change.  Words change, thoughts change.

You learn you're stronger than you thought you were, but also weaker.  You find your character.  It burns away the unimportant and you find out exactly who and what you can depend on, and sometimes it's surprising.

We used to say a lot, do a lot, that we just don't do anymore.

Before, when the kids would say, "I'm going to die!" very melodramatically, "oh, woe is me," type of thing, I'd flippantly reply, "not this week.  I don't have time for a funeral."  Or "what color casket do you want?"  Yeah, those words haven't passed my lips for a long time.  In fact, so long that my younger boys don't even remember me saying them.

The littlest phrases carry a lot of meaning.  I can ask, beg, threaten, rant and rave, and be ignored.  But if I say, "Need a little help in here," everyone jumps, and someone brings the landline in case we're calling 911.  See, those words, in that combination, means that something's going down with Aaron, and not in a good way.  

When a new baby was born, we'd take a picture of the baby with the older sibling and make shirts.  "I'm the big brother."  Or "I'm the big sister" and put the picture on the back.

Somehow, I just couldn't see the kids wanting or wearing a shirt with a picture of them holding their brother who had already passed on.  So we didn't make them this time.  Instead, I made photos with mats that said, "Big Brother to an Angel" or "Big Sister to an Angel."

Well, as part of Christmas, I finally got around to making a couple of memory blankets for two of the boys out of old t-shirts.  David had several of his "big brother" shirts in there, and that prompted Michael and Andrew to ask about their big brother shirts with Aaron.

And they want them, they really do.  So we finally took pictures of them with Aaron for that purpose.  It'll still probably take me time to get around to making them, but that's more a product of time constraints than anything.

But I've changed in other ways, too.  I try not to take life for granted anymore.  I want to feel, to experience, to love.  I want to spend more time with people.  I reach out more.  I look inside more, too.

I try to decide if something that's "so important" now will still be important in five or ten years.  Is my opinion just that, my opinion?  Or can it, will it make a difference if I speak up?

I look to my God more, reflect on where my strength comes from.  I know He is a God of miracles, I've seen it.  But while I know He has the healing power, I also know that often He strengthens us to endure our trials instead.  Because there are some truths we can only know after passing through the fire.

When you're forced to look at life, really look at life and death, you see in a different focus.  The important is brought forward, while the rest fades into the background, where it belongs.

When you're told your child will die, a part of you dies, too.  But another part holds onto every last moment with a courage and strength you didn't know existed.  It's beautiful, it's painful, it's exquisitely powerful.

It is life, in it's purest, most vulnerable, sensitive, loving, overwhelmed, and inspired form.

It is love.

Real love stories never have endings.
Richard Bach