U Turn

Don't have a clue what happened.  None of us do.  In some ways that's reassuring, in other ways it's not.

Aaron was slated for going home.  In fact, his doctor felt like he could be discharged yesterday afternoon or evening.  I held out for going this morning.  And wondered if I was being overcautious.  I have a personal goal of five liters or less for 24 hours and on Tuesday we spent a few hours at seven in the afternoon, and I just wanted to get in one more night.  So I held my ground, not that he was really all that pushy about it.  It really was a discussion and we came to a consensus.

Um, turns out that going home would have been a bad idea.  A very, VERY bad idea.  As the day wore on, it looked fairly mundane, boring, whatever.  We were simply marking time.  By the time I came back from dinner, he was a little higher though, seven liters again.  Then he started having trouble maintaining there.

Often when he gets rhinovirus, his pulmonary hypertension (the high blood pressure to his lungs) goes up and I thought that might be what we were seeing.  To treat that, we flood his lungs with oxygen, they relax, and we're all good again.  It takes about 15 minutes, no longer than 30, tops.  So I told them I was taking him to ten for a few minutes to see if that would do it, and it should have.

Should have.

That's not what happened.  By the time that 30 minutes was up, he was dropping more.  And some more.  I ended up pulling out his bag and bagging him.  I bagged him for at least ten minutes before we put him back on.  His nurse suctioned and we really didn't get much.  We had the respiratory therapist come and and do treatment.  Again, it didn't do much.

I lost count of how many times we bagged him over the next few hours.  The attending came by, we got x-rays, drew a blood gas (to measure how well his body was actually using the oxygen that was getting in), consulted the PICU.  In between each of the times, he'd do "okay" and then drop again.  Never super fast, just kind drift on down.  By the time we transferred into the PICU he was "stable-ish" but on 15 liters.  Yep, ten plus five.  Kinda a ways from the normal "five".

Good thing we didn't go home, huh?

(And yes, this is him playing through the whole thing.)

 Patience is the ability to count down before you blast off.  ~Author Unknown

Walking the Halls

Emotions in somewhat of a muddle.

We keep laughing here.  Every time we're admitted, someone asks me how long I've been working here.  Yeah, working.  Not been coming as a parent.  Every. Single. Time.  Yesterday I was in the Emergency Room with someone and the ER doc asked me.  And other frequent flyer moms have said the same thing.

I wonder what it is.  Is it that we've gotten so used to this place, so comfortable with it, that we wear a different air?  Where sometimes things "get" to us, but we never let it show?  We're not looking around trying to orient ourselves 'cause we've walked these halls Too. Many. Times, for too many hours?  Or we've already faced horrors that most people don't even know about.  Maybe that's it.

But yesterday I also got a wake-up call, a reminder.  I watched as a mom's face drained of blood when her son was put on a monitor and his sats settled at 84.  Yeah, 84, not 94.  I've seen 84 and worse a whole lot.  Now, I've never liked it, but it's something I've gotten somewhat used to seeing.  Yes, we mediate it.  He recovers.  We move on.  But this mom hadn't ever seen it before.

And all of a sudden, I felt myself back in the American Fork ER almost six years ago.  What I innocently thought would be a few hours in an emergency room turned into an ambulance ride up to a hospital I only sorta knew about.  And then a ten-day hospital stay.  I remember that surreal feeling of not knowing what was ahead, of changing plans, of not being able to make plans, of trying to adjust to a whole new paradigm.

Aaron did recover.  This child will, too.  But it made my heart ache, honestly more for the parents than for the child, although I hurt for him, too.

So I don't work here, although I think I'd like to someday.  I like to think I could add something, help someone.  'Cause I've walked these halls many times, for many hours.  And I remember...

God has not called us to see through each other, 

but to see each other through. 

~Author Unknown

Adding Another Holiday to the Collection

Yep, you guessed it.  We're back.

I wrote earlier about kicking this one at home, and it really looked like we did.  In fact, Thursday I took him out with me as we ran errands all morning and Friday he went back to school.

He didn't tolerate being off the vent, but we kinda expected that.  It usually takes a little while before that happens again.

Then Friday night he wasn't looking so good.  In fact, once again I felt like we might not make it through the night.  We weren't pulling much out of him, but he was needing a lot more oxygen and his nose was really runny again.  We ramped up breathing treatments again but even with that we had to bag him to get his oxygen back where it belonged.

Saturday morning was more of the same so I threw in the towel.  BUT we also made it here under our own power.  A lot of the time if he's needing to be bagged we do it, put him back on the ventilator and he slides right back down again.  Sometimes it takes longer, like a few hours.  Given that we'd gone about 12 hours between bagging, I figured we'd try it.

So we gave albuterol, bagged him up high again and put him in the car and he did well all the way up here.  In fact, while he was using a whole lot more oxygen than usual (seven liters!) he stayed stable on that for a few hours even after we got here.

All his labs and x-rays came back normal, except for rhinovirus.

We're in the PICU right now as a matter of caution, but they've already written for him to go to the floor at some time today.  The question is whether it's a continuation of the original illness (possibly), a secondary bacterial infection (probably not) or another bug all together (most likely).

So we'll watch and wait.  The Easter Bunny did actually find him up here last night, but more important, it's Easter morning, Resurrection Day.

Once again, a different way of celebrating the holiday, this most High Holy Day than I'm used to.  But actually only a little bit.

The kids did their egg hunt yesterday and I woke up (sorta, didn't really sleep) in the hospital. I'm heading home to go to church with the family and then we'll have Easter dinner before I head back up.

There will be a couple empty spots at the table.  Jonathan is on his mission in Argentina teaching people about the Gospel, the Good News.  And Aaron will be in his room up here at the Hotel on the Hill.  We'll miss them.  It won't be the same.

But the beauty of today is that we won't miss them forever.  They're mine, forever and always, because of His sacrifice.

I woke this morning with the hymn running through my mind:  "Christ the Lord is risen today, Alleluia."  He is risen, the tomb is empty, He lives.

Christ the Lord is ris'n today,

Alleluia!

Sons of men and angels say,

Alleluia!

Raise your joys and triumphs high,

Alleluia!

Sing, ye heav'ns, and earth reply,

Alleluia!

Lives again our glorious King,

Alleluia!

Where, O death, is now thy sting?

Alleluia!

Once he died our souls to save,

Alleluia!

Where thy victory, O grave?

Alleluia!

Crossing Our Fingers

Last week I was sick.  Sick as in went through a (large) bottle of cough syrup, who knows how many kleenex, and countless cough drops.  Sick as in I was in bed more than out for a couple of days.  And it kicked my hiney.  Even after I got better, I slept every chance I could get.

And I hoped and prayed that Aaron wouldn't get it.  I wore a mask any time I was outside my room.  My hands were chapped from washing them so often.  And I added in gloves and a gown if I had to step into his room.  I tried, I tried soooo hard to keep him from getting this mess.

But Sunday afternoon it looked like I hadn't done quite enough.  Somehow, those pesky, nasty germs got him.

He was sad, snotty, and tachy (higher heart rate).  And I packed my hospital bag.

But hey, I like optimism, so we didn't head right out.  Instead, we got very aggressive with breathing treatments, turned up the oxygen, and watched like a hawk.

Aaaaand, well, it might have worked.

He's still out of school and will be for at least another day while I keep an eye on him, but he's doing pretty good!  Yesterday he was still needing more oxygen, and a bit more suctioning, but we didn't head in.  And by afternoon/evening, we were closer to our baseline oxygen needs.

Today, his nose has pretty much stopped acting like a fountain, he's happy and playing, and we're not pulling anything from his trach.  I'm scaling back the albuterol a bit.  Not stopping entirely 'cause we're dealing with a Utah spring here.  You know, 70 degrees yesterday, snow today.

If all goes well, we'll move albuterol to an "as needed" basis tomorrow and kick him out the door for school on Thursday.

We just might have managed to beat this one without a stay in the Hotel on the Hill.  Pretty awesome, huh?

There are exactly as many special occasions in life as we choose to celebrate. 

~Robert Brault

Learning to Embrace the Journey

I've put this post off for a long time.  Mostly because I know it's going to stir up a whole host of emotions and memories.

I've written about our first hint of trouble.  I've written about his trach.  I've written about a lot of things.  But I don't think I've ever done more than touch on how I came to grips with his diagnosis.


You know, the whole "incompatible with life, I will attend my child's funeral" type of thing.  That one.

Quick recap:  we found out in February of 2010 that our baby would have a lot of challenges.  While they suspected Trisomy 18, we didn't have a definitive diagnosis (via amniocentesis) until April.  He was born mid-June.

I spent much of those months researching and crying, crying and researching.  Gathering information, learning, and crying some more.

I never did blame God.  Understand that.  I did however blame myself, my body.  How could I fail my child like this?

And I hated the diagnosis, that extra chromosome, the fear, the pain, the total certainty that I would outlive my son. (That last part is still hard.)

He was born and did well (for his condition) for the first several days.  We didn't see any apnea.  His digestive system kicked in.  His heart looked "okay", again, for Trisomy 18.

Then the first weekend came.  Saturday morning when I arrived at the NICU his monitor showed "apnea."  I asked if it had been "real" or just a malfunction.  Yes, it was real.  His first one.  And he looked different, tired, weary.  We actually made two trips down to the NICU that day, and the second one was even a bit harder.  He looked weaker, sadder in his eyes.  His body was tired.

We had been trying to wean him off of CPAP onto a nasal cannula for a few days and it wasn't going well.  Every time his CO2 (the gas we breathe out) would skyrocket, and they had to put him back on CPAP.

Sunday morning was Father's Day.  As you can imagine, I'd spent most of the week crying (yes, still).  William took the kids to church and just after they left, the NICU doctor called to report on rounds.  He still had not made the jump to the cannula.  I asked if she thought he ever would, and very gently, she said, "I don't know, it's starting to look like he might not."  I thanked her, hung up, and fell apart.

I spent most of the next few hours completely inconsolable.  I yelled and screamed at heaven.  I sobbed so hard it was difficult to breathe.  For the first time in my life I understood why sometimes sedation is necessary when you grieve.  No one else in our family could see that he was dying.  Only me.  And I told God point blank that if He was going to take Aaron back, He had to tell the rest of the family because there was no way I could do this, know this, by myself.

We went down again to the NICU after church for a few hours, and when it was time to come home, Michael (almost 4 years old) threw a temper tantrum because he didn't want to leave Aaron in the hospital.  Either we needed to stay, or he needed to come home with us.  My heart broke all over again because there was nothing else I wanted more.

But our "outside life" also continued.  And the next morning our second daughter was scheduled to leave for a week of high adventure camp in Southern Utah.  Her scoutmaster was an ER doc and he and his wife knew our story, you know, what was going on.  When we went to drop off Mary's gear, his wife and I started talking, and like many women, were sharing stories of our kids, craziness, and even births.

Shortly before we left, we were laughing about some of the funnier parts of labor that I had just experienced and another woman walked up.  She asked how old that particular child was now.

That was a bit of a dash of cold water as I stopped laughing and told her he was a week old and fighting for his life in a NICU.  She apologized and asked what was happening.  I told her he had a chromosomal disorder that was considered to be incompatible with life.  And was totally unprepared for what came next.

She got the biggest smile on her face and started gushing (seriously, she was), "Oh, how lucky for you!  How AWESOME!!  You have a celestial spirit in your home!!"

My eyes widened, my jaw dropped.  I quickly finished saying good-by and walked to the car with Mary by my side, almost hyperventilating, and muttering, "shut-up, shut-up, shut-up" under my breath while Mary kept saying, "Just breathe, Mom, just breathe."

I couldn't believe it!  I was so hurt!  I got in the car and as we were driving home started yelling, pounding the steering wheel with each word.

"I hate this!  I would give anything, ANYTHING at all for that "perfect spirit" to be imperfect, to stay here, to grow up, to play T-ball and soccer and fight with his brothers and break a window.  I just want him to live.  I don't care how much trouble he gets into.  I want to see him grow, love, fight, get in trouble.  I'd give ANYTHING. . . I would . . . I think . . .  I think I would . . . maybe . . . . . . maybe I would . . . ."

Maybe I wouldn't . . . . .

And there, right there, I can still see exactly where we were on the road, just a little bit north of the high school, in that spot, I began to think that maybe, just maybe, it was okay.

That God had heard my pleas, even my unspoken, unknown prayers, and that He knew what I needed, my family needed, Aaron needed.

And even though I didn't understand, He held us in His hand.  He knew.  He knew my joy, my pain, my sorrow, my grief.

He saw a bigger picture.  And somehow, it would be okay.

Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.

Isaiah 41:10

We're Home, It's Good

Forgive me if this is a bit short on words.  We're kinda short on sleep here.


But Aaron did get to come home last night.  Nothing grew out in his blood labs and he returned to good spirits, and kept his oxygen needs down.

He's also gotten really, REALLY good at pulling his ear protector off.

We all got to celebrate David's birthday tonight with him as he and Mary came home from BYU to be with us.  Aaron even joined us for the celebration.  Just missing Jonny on his mission.

And yes, Aaron comes by his goofy, playful nature honestly.  It seems all of my boys share that same affliction.








Now if we can just convince him to leave that bandage/cup alone until next Thursday.  If you see me sporting a few bald patches, you'll know I'm pulling my own hair out.


That's okay.  It's all good.  I'll take this any day over my still, sad little man that we had on Friday.

Having a place to go — is a home. Having someone to love — is a family. Having both — is a blessing. 

~Donna Hedges

Sigh of Relief

Yesterday was a rough one for this mama.

He slept most of the morning, no biggie there.  He often likes to sleep the morning away.  And he was only on 3 liters of oxygen.  I kept telling them we needed to wait for him to wake up to see what the true picture was.

Um, that picture?  It was kinda, actually downright, not pretty.

He woke up about 1 p.m. and things got rough.  His oxygen requirement went up to seven liters.  In and of itself, that's not that big a deal.  While still too high to bring him home, it was still trending lower each day.

The problem was he was sad, really sad.  This child doesn't cry, but this time he sure did.  And once that was over, he just laid there.  For hours.  There was no need for the ace wrap over his bandage.  In fact, there was actually no need for even bed rails.

Our wild man just laid there.  Didn't move.  Didn't make noise.  Didn't sleep.  Would sometimes make eye contact with me with big, sad looking eyes.  Not a single smile.  I didn't like it.  And neither did the doc and nurses.

So by evening, I'd had enough.  If there was something really ugly brewing, best we get on top of it as soon as possible.  The doctor agreed and we pulled all sorts of labs checking for infection.

Maybe that's what he was waiting for??  As the labs started trickling in, he started to move, just a little bit.  His numbers weren't great, but they were actually better than his immediate post-op figures.  So I went and grabbed a quick bite to eat.

I got back and someone had found the magic switch.  They were in the middle of changing a really nasty diaper, and he was "helping."  And grinning about the whole thing.  And pulling his cup off his ear.

So he earned himself the turban again, and promptly set to work undoing it, laughing the whole time.  The side rails up, the mesh zipped down, he played HARD until about 3 a.m., and on four liters of oxygen the whole time.

I slept better listening to him play than I had when he was quiet.  We're hoping to escape some time today.  My own heart is doing better.  And my smile is back, too.  So, so grateful.

Through the blackest night, morning gently tiptoes, feeling its way to dawn. 

~Robert Brault

Post-Op Day One

He's kinda liking the later start to things.

Surgery yesterday went really well, even if it was longer than I would have liked.  I guess in all honesty, any surgery is longer than I like it.

We got here and hung out for quite a while.  I was right.  By the time they got to the afternoon cases they were running a little behind. Then he decided that he wasn't real interested in an IV, so that took a while too, before they could get underway.  The fact that they had already put him out before attemting the IV didn't seem to matter to him.  He just wasn't into the "sharing" aspect of things.

Just hanging out in pre-op waiting...

Anyway, they cleaned out the bone behind his right ear and then Dr. ENT decided he wanted to try to open up his ear canal as well.  So they rebuilt that.  His canals have been so itty bitty.  Now, even if scar tissue forms, it should be closer to a normal size.  It might even increase his hearing a bit.

Temporary tattoo to make sure they
do the right ear.

He's done really well from a pain standpoint.  He did decide once again to bleed more than expected so we've avoiding the ibuprofen route.  He does have a narcotic written if he needs it, but so far Tylenol seems to be doing the trick.

However, he does want to keep us on our toes.  He's currently asleep (I guess everyone deserves to sleep in the day after surgery) and using about seven liters of oxygen.  When he's awake, it's more like ten.  Yep, can't go home on that.  Our concentrator only dials to ten, and in reality, the output is closer to nine.

Sleepy boy

So we gave him last night to see if it was just left over from surgery and this morning we've started steroids and albuterol treatments to see if we can wean him down to where he belongs.

But at least he doesn't seem to be in pain.  That is huge.

How poor are they that have not patience!

What wound did ever heal but by degrees?

~William Shakespeare, Othello

Surgery Stress

 It's tomorrow, surgery day.

Assuming we continue to do well through the night.

He's been "weird" the past several days.  He's had "junk" in his trach, but I haven't been able to suction it out.  Poor kid has been through three trach changes since Friday night.  And he can usually go weeks without one.  We're kinda thinking it's allergies 'cause we're not seeing any other symptoms.  Nothing from his nose, nothing (really) from his trach.  He's pretty happy, not too tired.  He does seem to have a lot more tummy bubbles, but that's about it.  Who knows?  I guess he does but he's not saying.

Growing up - Hope

So today I tried to get everything else ready for tomorrow.  Except, there really wasn't much.  Well, other than the bath he has to have before we go.  I even took the time to update his picture collages.  I put them up to help the hospital staff see "him" for who he really is.  You know, our child, our happy boy, not the sick baby trying to fight off nasties.  

Joy - It's In My Smile

But then I got the call with the surgery time.  We've had to leave here as early as 5 a.m. before for a 6:30 check-in.  Once I got to leave about 8:15.  Tomorrow?  Well, we'll be hanging out until about 10:00 a.m.  Now I'm really not sure what to do.

I'm used to getting everything ready, and most of it loaded in the car the night before.  I make a list, roll out of bed and hit the ground running.  Tomorrow there will be time for breakfast, family scripture study, and the bath that I'm not giving tonight.  And the pre-surgery jitters.

Trisomy Siblings = Love

We check in at 11:30 with a 1 p.m. start time.  I'll be a little surprised if it isn't a bit later than that.  This surgeon has a reputation for being quite meticulous, and often takes longer than is expected, at least when Aaron has been with him before.  The OR is scheduled for three hours for this particular operation.  It's going to be a very long day.

I think we're ready.  I think he is.  I can feel the stress already.  I hate surgery.  But not doing it would be worse for him.  So deep breaths, we can do this.  Love my little bug.

“Storms make oaks take roots”

Proverb