Sunday, July 1, 2018

A Tale of Two Nights

This monkey, seriously!

Let me paint you a picture:

Wednesday night, I have no nurse. (Different story, don't ask, bleh.) I try to wear him out. He's got school and I have an appointment in Salt Lake. But I also walk a bit of a tight rope. He's got allergies going, it's hot, and if he gets too tired seizures show up. So when we get home about 4 or so, I figure he needs a short nap. 

Except "short" is not what he has in mind. He's beat. I try to wake him for his shake vest and food, and he's really not interested. He's not scary, just tired. 

Well, okay. There are times when he's exhausted that he just sleeps, pretty much the whole night. So maybe...

10 o'clock, he's still sleeping and I lie down on a mattress in his room with alarms set for 2 and 5:30 am. 10:45 an adult kid calls needing some time, so we talk. Aaron still sleeps. This might work!

Until 11:30. Bing! Bright eyes! Um, really?  And the party begins. 

And continues the rest of the night. 

I guess I should be grateful he didn't start throwing toys at me until 5.

And Thursday and Friday nights? Nights that I had a nurse? Pretty much slept from 9:30 until 8. 

Little punk. 

I have no nurse the next two Wednesdays, plus family activities all day on the 4th and Andrew's Eagle Scout project all day at the hospital on Thursday. 

Life is never dull with this kid.  I guess I really wouldn’t want it to be.

In other news, he had his birthday, and we marked eight years since we brought him home from the NICU.

 He also got to go to Hogwarts and was sorted into Griffindor (of course! house of the bravest).

He’s had a bit of a tummy ache the last few days, so today he’s staying home from church with Daddy.  But through it all, the smiles continue.  

There was never a child so lovely but his mother was glad to get him to sleep. 
~Ralph Waldo Emerson

Sunday, June 10, 2018

Almost EIght?!?!

Then and Now

Aaron is almost eight!  Almost!!!  It's taken a long time to get to "almost."

Eight is a big deal to us.  In our religion, it's a REALLY big deal. 

First day of life.
First birthday, tried to sleep through it.


In our church, the Mormon Church, turning eight is an important milestone, a eternally significant milestone.  We don't baptize our babies because we feel they are innocent. Eight is the age of accountability, when they start taking responsibility to repent when they do something wrong.  Until then, they get a "free pass" so to speak.  It would be similar in importance to a Bar Mitzvah for a Jewish boy, or a First Communion for a Catholic child.

Four! Almost didn't happen. Bad asthma attack the night
before dropped his sats to 43%, had to call 911

Now Aaron is a little different.  He still and always will operate on a much lower developmental status, and he won't be baptized.  And that's okay.

It's kinda like when a kid breaks a neighbor's big glass window.  There's no way he can replace that.  He's not capable of it.  So his parents do it for him.  Christ's atonement takes the responsibility for the mistakes a child under eight makes, and also those who don't develop the ability to do so themselves.  But hence the notice and the excitement of his upcoming birthday.

Last December, a friend approached me all excited.  Aaron was almost eight!  How did that happen??

Um, except when she said that, a cold fist gripped my heart.  I know she meant well, and from her perspective, he was "almost eight."  For a kiddo who wasn't supposed to turn one, six months from eight is pretty neat.

But this is Aaron.  And he's fragile.  And he was still six months from eight with a nasty cold and flu season between him and that birthday.  And it terrified me.  Plus, last year on Aaron's birthday, Braeden (T18) died just two months before his eighth birthday.  Georgia (hydrocephalus/anencephaly) died one week after her ninth.  Chloe (T18) just passed a few weeks before her ninth.  Stacy (T18) died a week before her 37th.  And that's just a few of the children. 

It's reality.  I'm surrounded by death in my "new (almost eight years old) world."

So back to "eight."  It took until just a few weeks ago before I decided that Aaron could be "almost eight."  I figured at seven and 11 months, maybe it was time.  And then he pulled the stunts that got him out of school for the final two weeks.  Um, yeah, nasty thoughts...

Seven and so smiley!

But this week, this week!, this week Aaron turns EIGHT!  NOW, he can be "almost eight," 'cause if it doesn't happen now, he's going to be eight without being "almost eight."  (Yeah, I'm weird.  You knew that.)

Like I said above, he won't be baptized.  There won't be pictures of him in white in front of a baptismal font.  There won't be a new suit (he'd hate it anyway), or scriptures (he can't read).  But still, he's turning eight.  And eight years ago, I didn't know if he would even live.

And Almost Eight!

So please, come help us celebrate.  We're gathering from six to eight on Saturday, June 16th for cake and light refreshments.  Come wish him "Happy Birthday!"  Leave me a note on how he's influenced your life.  Send me a message if you need the address.  Help us make this birthday special, even if he's not traveling the road most children do.  Come celebrate our bug. 

"The first fact about the celebration of birthdays is that it is a good way of affirming defiantly, and even flamboyantly, that it is a good thing to be alive."
~G.K. Chesterton

Monday, May 28, 2018

Discharge, Take Two

Andrew helping with a haircut a few months ago.

Soooo, we were supposed to go home yesterday.  (Notice the words “were” and “go”.). Didn’t quite happen.  We were so close.  We had discharge papers and everything.  And then Aaron decided he wasn’t quite done.  About 1:00, he dropped his sats, and then dropped them some more.  We ended up on 10-12 liters just to maintain 80%.  A rash followed.

Before his transfusion, I spoke with the doctor about what I needed to be watching for as far as reactions.  He told me that the vast majority were skin reactions, and that almost all adverse events would show up within 24 hours.  Um, we were 25 hours since the transfusion started, 23 since it ended, right smack dab in the middle of that magic 24 hours.

I called William and told him I wasn’t sure what to do.  He laughed and said he was pretty sure I did know, I just didn’t like it.  I sighed, he was right.

So we stuck around one more night.

I like to think I made a difference though.  Memorial Day weekend, just like any holiday weekend, is a big deal in an ICU.  There are a lot of traumas, and as I passed our attending in the hallway, she just looked beat down.  I could hear some of the drama she was dealing with, and it wasn’t even just trying to keep kids alive. (I know, some “just”, right?). There were parents who were attacking her decisions, challenging everything.  I know as parents we have to be our kids’ advocates.  But this was common sense things, like they didn’t like staff gowning up to go into their child’s room because it made the child anxious.  Um, your child has a virus (and I know, ‘cause I heard you yelling about it).  Your child is a danger to other kids.  Yeah, it’s “just a cold!”  But that “just a cold” has them in the PICU, and my child, too.  Frankly, it’s not “just a cold”.  Okay, off my soapbox.

Anyway, I had a chance to talk to her last night before she left and tell her I was so grateful for all her help.  I was also a parent who questioned and challenged some of her decisions this week.  She was so grateful for my thanks.  Ironic, she works so hard to keep these precious children alive and get them healthy again, and sees so much grief.  I think as parents, we need to be more conscious of the doctors and all the staff as people, people with hearts and feelings, and often children of their own.  Almost eight years ago she wrote in Aaron’s book about how happy she was to see him doing so much better after heart failure, and that he should go home and be happy and not come back.  Well, two out of three....

So here we go again.  They’ve pretty much just changed the dates on the discharge papers.  And we should get home just in time for big brother Andrew’s birthday.  Happy birthday, kiddo.  15 looks good on you.

If we are facing in the right direction, all we have to do is keep on walking. 
~Buddhist Saying

Saturday, May 26, 2018

Trying to Increase the Baby Steps

Still here, still slow progress.  Today the team decided to go ahead and try a blood transfusion.  Yeah, we thought we were going to do that a few days ago, but no intervention is ever without risks, and they really wanted to see if he could recover on his own.

But yesterday there wasn’t much progress.  I mean, there was if you look at stability.  We didn’t have the wide swings in oxygen that we’ve had, but he also still needed the same amount, we weren’t able to break below 55%, and it was still usually 65-70% oxygen.

So today we added in more blood.  The thought is that if he’s got more “boxcars” (blood cells) to carry that oxygen around, his body will do better, because no matter how much oxygen you pump into someone, no blood cell can carry more than 100% oxygen.  So more cells means more oxygen.  At least we hope that’s the way his body will read it.  It worked several years ago.
And shortly we also hope to transition back to his home vent, when they get some time around here.  In spite of the “season” winding down, it’s still pretty busy in the unit.  Lots and lots of kids needing special care.

Aaron is in pretty good spirits.  We had about an hour last night where he was very upset, crying, which is not like him at all.  It was heartbreaking to hold him as he sobbed.  We don’t know why, maybe the steroids, maybe he’s just done being here.  But his happy smiles are back, and he’s spent the day watching movies on the TV, and scrunching his face and trying to see past anyone who blocks his view.  How like a kid is that?

All things working the way they’re supposed to, I’m hoping for home tomorrow.  I’d really like to exchange this bed for mine at home. Hoping...

“It’s a long road, so we are just trying to stay focused and grounded and keep moving forward.  I’ll take it, though.”
Sturgill Simpson

Wednesday, May 23, 2018

Some Progress

So last night we increased his support settings on his ventilator and started steriods.  It helped, some.

This morning the decision was made to hold physical and occupational therapy since he really went downhill after that, continue steriods, lower his oxygen parameters (at cardiology’s recommendation) and to consider a transfusion tomorrow, you know, give him more little red blood cells to be able to carry that oxygen around.

All in all, it has been an okay day.  We haven’t had to bag him.  That’s a victory.  He’s still really high on his oxygen and his support, but the big bad vent is outside the room waiting for us to need it, and we haven’t.  He’s been tired and slept a lot, but that’s probably due to his almost all night party last night.  He’s happy.  I’ll take it.

Sorry it’s such a short update, but that’s pretty much what’s happening here.  We keep trying to move forward, one baby step at a time.

“We tend to forget that baby steps still move you forward.”
Author Unknown

Tuesday, May 22, 2018

Rough Day

Playing with music therapy on Monday
Aaron is having a rough time this go around.  

Yesterday it seemed like things would be pretty straightforward.  Kinda a “lather, rinse, repeat” thing.  Been there, done that, bought the t-shirt.  You know, same old same old.  

Today, not so much.  He’s been tired, sleeping quite a bit, and when he’s not sleeping, he’s not satting well.  As in, we’re back on 100% oxygen and spent most of the day hanging in the mid-70’s.  A couple times we dipped into the 50’s and 60’s.  Yeah, not so great.  

He seems to be moving good air in his lungs.  He’s not wheezy, although albuterol does seem to help, briefly.  They repeated the x-ray with the same results, a good thing, it opens up the possibility of using steroids on him.  

For now, we’re increasing his support on his ventilator.  If that doesn’t work, we’ll change to a bigger vent.  

But it’s kinda hard.  He’s happy, don’t get me wrong.  We’ve still got smiles and all his hijinks, pulling off leads, teasing, etc.  But still...

So what did I do?  I escaped briefly and had dinner with two other moms.  Two moms who are facing the same long-term outcome.  And we talked and laughed, and tried not to cry.  Gotta love people who just “get it” ‘cause sometimes, that’s the only way to keep from losing your mind.  (Okay, maybe too late for that, but you know what I mean.). 

Anyway, we’ve had the “talk” again.  And I “talked” as well.  There is no mistaking that we are still a full code, that if he doesn’t respond to the vent settings or the bigger vent, we’ll escalate from there.  There will be no giving up.  This kid still has way too much life and joy and goofiness going on.  We’re not giving up, no one is.  

But sometimes, sometimes it’s hard.  

"If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward."
—Martin Luther King, Jr

Sunday, May 20, 2018

Here We Go Again

Last night in the ER
Yep, we’re back, a month and a half after discharge.  Kinda rough.

This one hit us out of the blue, and I won’t lie, it made my thoughts go places no mama’s thoughts should go, mostly because I didn’t see it coming, not much anyway.

Aaron was good, really good, almost all week.  He went to all the concerts, one each night, and loved them.  No problems, no issues.  And being tired out, he slept well at night, too.

Until Friday, that is.  Friday started out like any other day, just fine.  There was a little more suctioning the night before, but our pollen counts are also sky high, so whatever.

And then his nurse called me at work from school. He was running a fever. 101.1  She was suctioning a lot.  He was seizing quite a bit.  And he was maxed out on his oxygen and still not able to maintain his sats.

The call came in one minute before my lunch break, so I quickly explained the situation to the front office and left, promising to be back as soon as I could, but it would probably take a little longer than my 30 minutes.  Raced over to his school, got him home, helped get him set up and went back.  I was a little late, but not much.

Then they asked me if my son was okay, if I was okay.  I didn't know, honestly.

Friday afternoon at home
We got the fever down and he slept, pretty much all night, from 1 pm to 7:30 am.  (Seizures will do that to you, wipe you out.). Still it was hard to keep him stable.  We have a big M-90 tank, the size that ambulances run with for emergencies.  We blew through that in less than 24 hours, and often when he wasn’t on it, we were bagging him.  We tried to stay home, we really tried.  Yesterday was Andrew’s last soccer game, there were things that needed to be done at home.  Graduation is coming up, dance festivals, etc.  But eventually I had to throw in the towel and give up.  

He’s resting now in the PICU.  It’s not pneumonia, my biggest fear.  It looks viral.  We’ll have to see how it all plays out.  At the moment, this very moment, he’s looking pretty darn good.  But he’s also asleep.  I’m sure that will change when he wakes up.  

So Tincture of Time and all that.  We’ll make it through this one, too.  Just needing more support than we can give him at home.  

Amazing what a kid will pull to get a “vacation.”  
                   Xray time

[M]an can accept pleasure only to the extent that he is willing to accept pain... 
the rejection of either eliminates both. 
~Thea Alexander