Sunday, August 21, 2016

Crazy Busy Life

I keep meaning to find time to write, but even finding time to sleep has been a bit elusive lately.

We've had a soccer tournament, multiple doctor appointments, Make A Wish, back to school nights, a missionary farewell, and all sorts of "fun" with equipment (4, FOUR! concentrator issues this week alone).

But all in all, we're still truckin' along, moving forward (and losing my mind).

Aaron is doing relatively well.  We're back inside our surgery window, only five more weeks, which really can't come soon enough.  Poor baby keeps dealing with an ear infection in his right ear, the one that doesn't currently have a tube in it.  He's ruptured that eardrum four times now since the second week of July.  It makes for all sorts of fun with his oxygen.  See, when it hurts, he doesn't breathe well, doesn't oxygenate well, and we scramble to keep him home.  So far so good, but I'll breathe better myself once we can get this taken care of.

School starts tomorrow for the public school kids and the college kids move out on Wednesday.  Aaron even has a nurse, so he gets to start tomorrow, too.  First time in 25 years I haven't had a kid home at least half the day.  Can't wait to see how this plays out.

Make A Wish came in last week and installed a big screen TV along with a bunch of peripherals that he is absolutely LOVING!  He gets so excited for movies and Sesame Street.  They also brought balloons, one of his very favorite things in the whole world.  So much fun!

He made it to the Alpine Days Parade again, hasn't missed a year yet.  But side effect of his ear surgery in March where they opened up his ear canal is that he is hearing better.  And with that increased hearing comes a not so fun part where the loud noises scare him.  While he loves the guys at Lone Peak Fire, he's not that fond of their sirens.  Big crocodile tears...

On another note, I had an interesting experience at  the middle school during back to school night this week.  While we were waiting for a teacher to finish visiting with another parent, a younger sibling of that student came up and in a somewhat loud voice exclaimed, "I like his face!"


I was a little taken aback.  His face?  I couldn't figure it out, and I wondered why Mom wasn't intervening.  I remarked that he was a little tired, but he liked making new friends.

She went on and asked how old he was.  I told her and she announced that she was almost eight.  I asked when her birthday was, and she told me.  About that time I realized something.  Well, two somethings.

She apparently has her own challenges.  She was all sorts of excited as she described her upcoming party, but her words and gestures were much closer to two or three than almost eight.

And I was guilty of assuming the negative.  I thought she was making fun of Aaron, or something else like that.  She was simply an excited little girl who was probably bored with the evening (I know my kids were), who wanted to make a new friend.  And she was much more open-minded and open-hearted than I was.  As she left, I wished her a very happy upcoming birthday.  I hope it's all she dreams it will be.

And I hope I remember the lesson she taught me.

"An open mind leaves a chance for someone to drop 
a worthwhile thought in it."
-Mark Twain

Sunday, August 7, 2016

Continued Struggles

Big brothers are the best.
We're still home, but we're still struggling a bit.  Not quite as much as last week, but not where he should be.

I didn't bag him this week (I know, crazy when that's your "victory") and I only had to resort to the oxygen tank a few times.  But this is taking much, much longer to get back to his baseline than it usually does.  He's also tolerated the speaking valve, but only a little bit.  Again, I'm scratching my head.

Deborah and Nick
So there's been some tough times going on in between my ears.  You know, what next, what if, what have I missed...

BUT on the flip side, he has gotten out and about a bit.  Just not for as long as he normally would.  And I guess, a part of my worry there is that school is (supposed to be) starting soon, and it will be a full day, at least in theory.

Watching from the sidelines.
We also have a glitch there.  See, we STILL don't have a school nurse for him.  It starts two weeks from tomorrow, and ain't no way I'm letting someone walk out the door with him that I'm not confident can handle anything he (or his airway) can throw at them.  Yep, we're getting down to the wire.  So PLEASE, if you know anyone who wants to spend their days with this cutie, send them my way.  They do have to be an RN or LPN to be considered because they're being hired by the school district.  And the hours are roughly 8-4 M-F on the school calendar.  Here is a link to the listing.
Jonny and Katie

Last week we actually made it through a week without any doctor's appointments.  I'd knock on wood, except he's already scheduled for one this week (ears) and two next week (check-up and gum surgery post-op).  Next week, in addition to the regularly scheduled craziness, will bring Make A Wish out to work on his wish, a soccer tournament, and another pancake breakfast, parade, and big brother Matthew's missionary farewell talk.  I'm trying not to think about how that's all going to fit together.
Deborah and Larry

But yesterday and Friday brought outings with big kids.  Friday, he went to a ballroom competition to watch Deborah and Jonny compete.  It was Jonny's first comp in two and a half years, and they looked really good.  Deborah and her Latin partner placed 2nd in their first event and 6th in their second, and she and her smooth partner (1st comp for that partnership) made some cuts as well.  Fun times.

Where did that noise come from?
Yesterday found Aaron supervising at a pancake breakfast at the Highland Fling.  He did pretty well, if I do say so myself.  Food was good, company was fun, and there was a parade at the end of it all.  I do have to say though that he did not appreciate the sirens, again.  We may have to skip the beginning of parades for a while.  Although crying does open up the lungs really, really well.  Poor baby.  He was fascinated with Joseph's big sousaphone.

Making sure we flip those pancakes right.
Thursday, a great guy came out and did family pictures for us.  It's the first we've been able to do for three and a half years, and there's a very good chance it will be four years before we're all back together again.  And who knows what all will happen in the meantime.  So a huge shout out to Steve Peters of Embre Photography for doing this for us.  I can't wait to see the proofs.

So all in all, it's a crazy, busy, finish up the summer, slide sideways into the school year time around here.

 Summer will end soon enough, and childhood as well.” 
― George R.R. Martin

Sunday, July 31, 2016

Impatient Patient

Well, we ran away, quick like a bunny, but probably too soon.

He IS still at home and we're not planning to go back, but it's been a bit of a battle keeping him here.  I think it's been one part stubbornness and two parts lots of equipment and experience.

We've bagged him a few times, put him on tanks of oxygen at 10 to 15 liters, and briefly tolerated sats in the mid-80's.  Let me tell ya, running on 12 liters a minute, you can empty a full tank in  just under an hour.  Fortunately, since he's been in the hospital and on their oxygen, we've got plenty of tanks.

But he's happy and we're at home.

Wednesday he had appointments both with a dietician and orthopedics. We're tweaking his food again, but just a little bit.  Overall, we've got a good plan in place.

Shriner's Hospital takes care of his orthopedic challenges.  They're the ones that did the casting and surgery on his feet and are following his scoliosis.  Once a spinal curve reaches a certain point, it progresses fairly quickly.  We're getting there, so they're watching him every year.  BUT he's only progressed from 33% to almost 35% curvature in the past year.  That's really good.  At some point, he'll need surgery, but we won't even talk about it until he's past 50%, and probably not until closer to 75-80%.  By then it will impact his lungs and heart so it will be a necessity.  So frankly, almost 35% was a good thing to hear.

Right now, he's hanging out at home.  We tried to go to church today, but no dice.  He needed too much oxygen to be able to stay.  But he's laughing and playing.

Plus, it's big brother, Joseph's 16th birthday, and our last birthday for over two years that we'll have everyone here for.  He missed Dad's and Matthew's 'cause he was in the hospital, although he was around for Michael's.

And maybe next time he's at his "vacation home" Mama won't be such an impatient patient.

Experience has taught me this, that we undo ourselves by impatience.  Misfortunes have their life and their limits, their sickness and their health.  
~Michel de Montaigne

Tuesday, July 26, 2016

Run Away!

Fun sticker child life made for his bed.
Yep, that's the plan:  Run Away!!  Of course, we have to turn around and come right back for clinic visits tomorrow, but still...

We've made it back down to where his oxygen needs are manageable at home.  Seriously, that's what this whole visit has been about.  His sick little lungs needed more oxygen than our home concentrator was able to provide.  But yesterday we worked hard to keep him stable on less.

This building is across the street from the hospital.  We
watched it go up, and they've left to giant builder bear
stickers on the windows.  Fun. 
Sometimes the impulse has been to turn him up and not try to figure out the why behind the increase.  I mean, it's just a little bit, and a little bit more, until it's actually a long ways from where he started.  But yesterday's team of nurses and techs really put forth an effort to move him around, suction, make sure probes and leads were actually accurate instead of just assuming they were.  And while he did go high for a little bit, it wasn't long.  So I think, I hope, we're good to go!

There have been some bumps this time around and I'll be working with some powers that be to make sure they don't happen to others.  But by and large, the staff up here has been wonderful.  Plus, there are some really fun friends who make it worthwhile, and frankly, this is the only place we ever get to see each other.

And there's always a fun touch of whimsy.  It's Christmas in July, and Spidey is all decked out.  Makes me grin.

This is view from our window.  It's hard to find it in the light, but at night, the Salt Lake Temple is a beacon in the darkness.  There have been some frustrating moments this time around, but when I look out at the Temple, I can remember that it's going to be okay. 

“When you mature in your relationship with God you realize how suffering and patience are like eating your spiritual vegetables.” 
― Criss Jami

Sunday, July 24, 2016

Still Here

We're still here, still hanging out, still playing at our "vacation home."

Yesterday though, he had a lot of blood in his right ear.  We cleaned it, and more came, and some more.  I think I irrigated that ear with over 10 ml of an alcohol/vinegar rinse (that's about 2 teaspoons).  We're pretty sure his eardrum ruptured, which in itself is not a great thing.  BUT it also means that the pain/pressure from behind the ear is now gone, and that makes breathing, swallowing, just living, much more comfortable.

And guess what?  His oxygen needs are dropping.  We "only" needed 7 1/2 liters at his highest yesterday, so it's progress.  Today he's at three, but he's still pretty tired.  We'll see what happens when he's fully awake.

I went to church today at the hospital.  As I looked around, I marveled again at the diversity there.  There were those in suits with their wives in dresses.  There was hospital staff in scrubs.  There were a few patients in hospital gowns while others were in casual clothes or even sweats.  But we all came together to take the Sacrament and renew our covenants.

A few weeks ago, I was talking with someone whose son had been involved in a horrific accident where all the bones in his foot were crushed.  It's hard, really hard to deal something like that.  She was quick to point out the blessings.  He gets to keep his foot, he'll walk and even run again.  Someday, this will all be a painful, but distant, memory.  And those are good things, really, they are.  And I do think we need to be very aware of and grateful for our blessings.  

BUT there's also the flip side of things.  This is NOT the way this family dreamed they'd spend their summer.  It hurts, badly.  And as we spoke and I told her that as wonderful as all the blessings are, it was also okay to not be okay with things, that our Savior sorrowed for our pains and our problems with and for us, and if He sorrowed, it was obviously okay for us to be sad, too.  

As I was relating this to my family, Jonathan brought up that we're actually commanded to grieve.  But how can we bear each other's burdens if we don't know they exist?  If we always put on the happy face and claim everything is fine (my kids say "fine" means "freaked out, insecure, neurotic, and emotional") how can anyone help?  

And perhaps even worse, when we look around and everyone else does seem to have it all together, we feel even more alone than before.  

That is not the way this life is supposed to go.  It's important not to wallow in despair all the time, but it's also important to acknowledge that sometimes we don't understand why things are happening, and even though we have great faith that things will work out in the end (whenever that happens to come), what's happening now is not the way we thought things would be going.  And when you feel alone, like nobody else knows or understands, it's even harder to see your way out of the darkness.  

I have been to more funerals and viewings for children in the past six years than I thought I'd attend in my life.  I've made friends at the hospital and communicated online with people I'll never meet, giving and also drawing strength.  There is strength in numbers, there is unity and peace in knowing that you're not alone. 

Mourning and being sad are not evidence of a lack of faith.  Rather they are evidence of great love.  Christ mourned over Jerusalem and the destruction that was coming, He mourned with Mary and Martha, and did this knowing he was going to be restoring Lazerus to them.  If we didn't love, we wouldn't grieve.

Thou shalt live together in love, 
insomuch that thou shalt weep for the loss of them that die...

Friday, July 22, 2016

Not a Quick Fix

I guess I figured since we managed most of his cold at home, this might be a quick little bump and we'd be right back where we were.

Um, not so, it seems.  He did really well for the first 12+ hours after we got him stable.  In fact, well enough that I dreamed of busting out of here bright and early today.  Fast, quick, easy-like.  But yesterday afternoon when we were between ten and 12 liters, I figured we might need to stick around for most of today.  This morning, we were back down to three, and I thought, well, if the day goes like that, we're still outa here, just not quite so early.

Except, it didn't.  Within a fairly short time he was above our five liter threshold.  And then more, and some more on top of that.  It was only for about 15 minutes, but he ended up back on 12 liters again, and has spent most of the day at eight or above.  Yep, much too high for a ticket out of here.

In fact, at one point, they started suggesting he might head back downstairs to the PICU.  (PICU is 2nd floor, the "floor" is 3rd floor for us.)  I got in his face and informed him that the only trip downstairs he needed to be thinking of was the one that was two floors down and then out the door.  One floor was not acceptable.  He grinned, and then cooperated, a little bit.

So we're here until his lungs can relax.  It's really right on schedule.  His pulmonary hypertension always gets worse five to seven days into a cold.  But I let myself get my hopes up, so it seems a little harder.

But there are bright spots, too.  I got to spend time with a new Trisomy mama today.  I love making new friends.  I love seeing old ones, too, like the one across the hall whose kid also thinks it's funny  to bounce up and down between the floor and the PICU, and another heart mom who gave me a ride home today.  Plus one who's coming to feed Aaron tomorrow and Sunday (if we're still here) so I can spend some time at home.  See, because we're bringing in our own food, the hospital can't give it to him.  Liability issues and all.  Either I have to do it, or I can ask another non-hospital employee adult to do it.  But staff here can't do it.

So lots of interaction with some really neat people, including great staff members that I'd really, really like to figure out how to see socially instead of professionally.  

And bonus, someone, my son won't say who, dropped off some treats for me.  He came out as I was leaving and said he wasn't allowed to say who.  Whoever you are, I've already enjoyed some of them.  Nothing like a little chocolate to brighten up a day.  

So we'll make it.  It just won't be quite as easy as I was hoping it would be.  Slow and steady wins the race, right?  And besides, Aaron thinks it's all a grand party anyway.  

If one dream should fall and break into a thousand pieces, 
never be afraid to pick one of those pieces up and begin again. 
~Flavia Weedn

Wednesday, July 20, 2016

I Did NOT See This Coming

So yeah, we're back in the hospital.  I SOOO thought we were going to beat this at home.  And we were almost there.

Plus, usually, I see the trip coming, at least a few hours ahead of time.  I got no warning with this one.  Like, less than 15 minutes or so.

He actually had a pretty good day, was a touch higher on his oxygen again, but not too much, at least at first.  But remember, he's had rhino, a cold, and usually that puts us in the PICU on massive amounts of oxygen, so I wasn't too worried, even when he went high.  But about 6:00 he was struggling to get out of the mid-80's on ten liters, so I bagged him, you know, just to give him a little boost.

That didn't go so well.  I put him back on the vent, and he dropped again, so I started albuterol.  He'd had it not long before, but I figured we'd try again.  As I started it, he continued to fall, like, mid-70's fall.  So out came the bag, again.  We pushed him back up, gave him some extra this time, and tried once more.  Nope, no dice.

This all happened in less than 30 minutes.  So we called our buddies at Lone Peak Fire for a ride and came on up.  I'm still not quite sure what I have and what I've forgotten.

It looks like his pulmonary hypertension has reared it's ugly head, and he experienced an extended pulmonary hypertensive crisis last night.  Often, we can just bag him out of one, but this time it went on and on.  He landed in the PICU on 15 liters (that's 15 liters per minute, so 900 liters per hour!) of oxygen. Sometime during the night, well before he went to sleep, they were able to turn him down to five liters.

We're hoping the worst is past.  Hoping for the floor later today and home tomorrow.  And man, could we just find a way to see his buddies up here socially?  Without having to make a production out of it?

"The twists and turns of your life can be so unexpected, 
and that's a good thing to learn."
Christina Baker Kline