Tuesday, June 24, 2014


Silly boy.  I guess he decided that he was going
to have plenty of time to sleep today, because
last night, he decided to party.  He was up from
1-4 a.m.  So even before they took him back,
he decided to go to sleep.  Maybe he was hoping
to make it easy on the anesthesiologist.
11:00 a.m.  Aaron is having surgery now. We got here in good time and they were running on schedule. They took him back just a few minutes after 9:00 and the room was scheduled for two hours. 

The plan was to get everything else done and then do his hearing test. I'm guessing there was a lot of junk in his ears because shortly after starting, Dr M. called audiology and told them he didn't think we'd get accurate results and recommended putting it off six weeks to let his ears heal up. 

Right now it's 11:15, a touch longer than the original surgery was supposed to go. They cancelled the ABR which was supposed to take 45 minutes to an hour. The desk called back to get an update for me half an hour ago and they were almost done, had finished all but the cyst. So now I'm sitting here, still waiting, and wondering what it is that's taking so long. I know it's probably nothing, but I've always had an overactive imagination. Still, surgery time should have been cut in half and it's been longer instead. 

About the time I finished writing this, Dr. M. came in to talk to me.  The rest of this I'm writing up at home.

At 11:30 Dr M. came and spoke to me.  When he finished, he said that Aaron was waking up and they'd call me back in a little while.  As he walked out, the phone rang and it was for me, yea!!  One of the perks of having a trach and vent is that he doesn't have to be able to breathe on his own, or have his tube removed.  In fact, please DON'T remove the tube!

Anyway, ear tubes were removed, ears washed out really good, and new tubes placed.  It's still really hard to see back in there because his ear canals are so tiny, but they couldn't see any nasties back there.  His adenoids were HUGE, so we're hoping that in removing them, his ear infections will start to subside. This poor kid gets one every four to six weeks.  Yeah, not fun.

What we thought was a cyst turned out to be a lymph node.  And it was getting bigger.  Dr. M. said that it looked innocent, or benign, but because it's come out of his body, it's being sent to pathology.  It is of concern.  Lymph nodes aren't supposed to do that.  But it's probably (hopefully!) nothing.  And now it's in a jar instead of in him, much safer that way in any case.  We should have news, if there is any, within a few days.

Now we're home, he's resting, and he's starting to feel better.  He's having some pain, but it seems well-controlled with Tylenol (gotta love modern pain meds, right?).  He was pretty sad this afternoon, but he's getting happier.  We'll keep a close eye on him over the next several days, just to make sure he doesn't have any post-op bleeding.  But all in all, a successful day.  And I know it was due in large part to the many, many prayers offered for him.  Thank you, from the bottom of my heart.  

It is not a case we are treating; it is a living, palpitating, alas, too often suffering fellow creature. ~John Brown

Monday, June 23, 2014


Just a quick update here:

Aaron is having surgery tomorrow.  They're doing an ABR (extensive hearing test), removing a cyst from just below his right collarbone, removing his adenoids, removing and replacing his ear tubes, and checking carefully for any nasties that might be showing up back in his middle ear and the surrounding bones.

We check in at 7:30 and surgery is scheduled for 9:00 a.m.  We're hoping to be home by about mid to late afternoon.

Please keep him in your prayers.  His asthma has been really acting up again.  I had to give two breathing treatments tonight, about an hour and a half apart, and then bag him for a few minutes to really help pull him out of it.

I'll try to update here tomorrow, but if it's crazy or exhausting, it may just be on his Facebook page.

Oh, and for all those who wonder how we do it, or what it's like, emotionally, anyway, there's an amazing slideshow that a friend put together.  I've linked it on Aaron's Facebook page.  It gives amazing insight into this journey that we're on.  But grab the tissues, especially when you put the music and the pictures together.  You've been warned.

Friday, June 20, 2014

This Week

This week has been a challenge to me, emotionally, at least.

First of all, Aaron is doing quite well.  He continues to struggle a bit with his asthma.  He's needed breathing treatments a few times, and yesterday (at school!) he needed to be bagged out of an episode.  Yeah, his nurse was great and handled everything well, but I finally bit the bullet and took him and introduced him to American Fork EMS since they're the ones that will respond if he's at school.
Best Boy Band Ever

He also had labs done yesterday and his platelet count continues to increase.  Two weeks ago, it was 85, last week in the emergency room it was 115, and then yesterday it was 125.  So surgery next week is a "go."  That's a good thing.  Now the butterflies in my stomach about it...  Well, we'll just have to deal with those.

He's having an ABR (very detailed hearing test) because he doesn't seem to like his hearing aid anymore, and he seems to be hearing okay without it.  He's having a lovely (think growing bigger) cyst removed from just below his collarbone, his adenoids out, and then lots of fun with his ears.  (read that with sarcasm)  He gets ear infections about every 4-6 weeks.  And because we can't see his eardrums, the only way to diagnose them is when they start draining guck.  Frankly, all that junk in there isn't a good thing.  It can infect the mastoid bone just behind the ear causing mastoiditis.  It can also be a symptom of another fun thing called a cholesteatoma.  So next Tuesday promises to be filled with all sorts of adventures.  Frankly, we're hoping for a boring time.  Hey, one can always hope, right?

But back to this week.  This week, Aaron's big brother Jonathan, went into the Missionary Training Center, or MTC.  He's left home for two years to go teach the people of northern Argentina about Christ.  I truly wouldn't have him anywhere else.  He's excited, he's ready, it's time.  But oh, my mother's heart is aching.  This is the third time I've left a child there, and at least for this mama, it doesn't get any easier.  It's not a "been there, done that" kind of thing.  More of a "once bitten, twice shy."  Each time it's gotten harder. (By the time we send Michael out, I'm going to be a mess. Here's hoping that by then there are grandchildren to distract me.) I suppose there could be a few reasons for this, but I think it's mostly that now I know what I'm going to be missing.  From this end of things, two years is a long, long time.

If I didn't have a testimony of the Gospel of Christ, I couldn't do it.  But to know that he's sharing our joy with others, helping them to tie their families to them forever, yeah, I can do that.  Because even though a lot will change, (Aaron will be SIX when he comes back), it's okay.  And unlike when Aaron goes on his "mission," I'll get weekly emails and twice a year phone calls.  And he will come home in two years.  And so that's okay.

So Wednesday night, I OD'd on chocolate chip cookies a friend brought me and wallowed in self-pity.  Yesterday, I put together a couple of long-overdue thank-you's to people who've helped out Aaron, took him for lab work and to meet the American Fork EMS.  And today, today is a quiet, lazy day.  Not planning to get much done at all.  William and all the kids who are still here are gone, running a cub scout day camp, and Aaron and I are just hanging out.  And I'm loving it. Missing one boy (okay, two boys and a girl) but loving that I've still got Aaron.  And in the grand scheme of things, they're all mine, no matter how far across the globe they are scattered.  And they always, always will be.

Other things may change us, but we start and end with the family. ~Anthony Brandt

Sunday, June 15, 2014

4th Birthday

So the 4th birthday party didn't turn out the way I thought it would, but that's okay.  This is NOT what I would have planned, but he had some fun new experiences, and got to see people he doesn't usually see on his birthday.

It started out when his nurse felt like he needed some birthday presents, so she brought in a couple of really cute things.  They even had some tags so I can send thank-yous to the ones who donated them.

Then Child Life came in with a fun sign and a Toy Story balloon for him to play with.  This kid LOVES balloons.  So much fun to wave around and pull the strings on!

A little bit later, Winston came to visit.  Winston is a therapy dog.  Aaron really has never seen dogs much at all.  Lady, our Dalmatian, was too old, and Daisy, our Cocker, was just too excitable.  And they've both gone on now.

So Winston was really his first up close and personal experience.  Little monkey, his handler gave Aaron some dog treats to feed Winston.  And Aaron would hold them on his palm, mostly open, right until Winston's tongue would try to lap them up.

Then that little fist would close up tight!  And I don't think he was scared, because he wasn't trying to pull his hand away.  But he wasn't letting Winston get that treat either.  I had to uncurl his fingers, time and time again.  And he thought it was sooooo funny!

Not looking too bad, is he?
Hey, mom, these cords are kinda fun, but think
we can lose them and bust outa here?
Shortly after that, it was time to come home.  We were there about 15 hours total.  Talk about a record for hospital admits for us.  And while he did have another bad episode on Saturday, it wasn't quite as bad, and I was able to rescue him here at home.  So yea on that one!

Anyway, since we weren't up to a party, a couple friends of his released some balloons for us, to send to all of his angel friends to play with.  They also drew some cute pictures on their sidewalk to share with us.

Can I just say, this kind of thing really touches my heart?  I'm so grateful they took the time out of their day to do this.  This mom is also a special needs mom.  It's not like she was just sitting around, wondering what the heck to do with her time on Friday.  But she took some time to brighten our lives.

When we got home, Grandma Wiess had sent some balloons that we let off, too.  It was just us, but that's okay.  And I'm guessing those angels were excited because the winds carried them off really fast!

Then it was cake time!  There's a wonderful organization called "Icing Smiles" which organizes bakers and connects them with families who have children with special needs.  One of their bakers made Aaron's cake for us.  She took his love of balls and bright colors and created a really fun cake!

Gramma Brown sent a little Superman doll for
our Superguy.  He thought it was really fun!

 And those balloons he loves?  Check out what the paramedics brought by.  These were the same guys who transported us the night before, the ones who were there and willing to do whatever was needed to keep our little guy alive, the ones who thought they might have to.

I mentioned before that it was very telling that they asked if I wanted to stop at a closer hospital to stabilize him, and that they didn't want him in his car seat, because frankly, you can't do CPR or put in lines very well when a patient is tied into a car seat.

But we didn't have to.  Instead, he's now back at home, and those balloons are being whipped around the bed every chance he gets!   I think I'm going to be paying a visit to the fire station this week with some goodies as a small token of a very big thank you!

So in the end, while it wasn't the day I planned for, that's okay.  We still got to celebrate with him, help him send off his balloon, laugh as he played with other balloons.  Hold him, sing to him, grin as he attacked his cake, clean him up afterwards.  Help him open presents, blow out his candles, and tuck him in bed.

I wasn't decorating his grave.  I wasn't choosing a headstone.  I wasn't sending a balloon off to him.  And so, it was a very good day, indeed.

Life may not be the party we hoped for, 
but while we're here we should dance.  
~Author Unknown

Friday, June 13, 2014

Quick Update

It looks like the culprit is asthma.  He's had a great night and we're heading out in about 15 minutes. 

I'm afraid we're going to have to postpone his party for now.  Not sure when it will happen, but I only got 3 hours of sleep last night and he needs to rest, too.  Not much wanting to repeat our experience here.  I don't scare real easily anymore, but last night, yeah, I was not happy.

I keep seeing that still, blue-gray face, watching those accessory muscles work hard to try, try to draw in breath.  Hearing me tell him that he just wasn't getting this.  I was forcing air into his lungs with 100% oxygen.  That meant he was supposed to improve his oxygen sats, not drop them further.

Anyway, if you could release a balloon for him, for all his little angel friends to play with, and take a picture, I would so appreciate it.  I think we're going to be celebrating his birthday quietly at home, grateful that he's still with us to celebrate.
Gratitude is the memory of the heart. ~Jean Baptiste Massieu

ARG!!! Party Probably Not Happening

Just a quick, down and dirty about what we're doing.

Aaron dropped his oxygen sats very quickly, and very low tonight.  Like he hit 41%.  And that was while bagging him.

I was in the other room and he started beeping, and stopped, and started, so I went in.  (As an aside, he'd had labored breathing earlier in the day, and I'd given albuterol about 4 p.m.)  When I got there, he was sad, and his sats were a bit low.  Not awful, but low.  And he was gagging, so he needed his tummy vented.  He dropped a bit more, so I called William to come in so he could vent the tummy while I suctioned.  By the time he got there (a few seconds later) I gave up on the suction idea and was grabbing the bag.  He was about 70%.

He kept dropping.  At 50% I yelled for Jonathan to get me an ambulance.  Can I just tell you, 50% is ugly.  I mean, really, it's ugly, visually.  It's a blue/gray color, not much in the way of lucidity.  Stomach muscles working really hard to suck the air in.  And 41%??  Well, that's even worse.  And it took FOREVER to bring him back up.  We started albuterol through the bag before paramedics got there.

When they arrived, he'd improved.  Not sure how much, I can't remember.  They asked if we wanted to stop at another hospital before heading up here to stabilize him.  Nope, let's just throw and go.  It's telling that this time, they did NOT want the car seat.  If he went south again, it would be easier to work him without the carseat in the way.

On the way up, he was still struggling, still working really hard to breathe.  We'd done a quick trach change just before leaving, HOPING for a nasty plug.  Nope, not really.  There was some "stuff" in the trach, but nothing that should have done what we were dealing with.  We nebulized some more albuterol in the ambulance, and afterwards, he started breathing easier.

So now?  How's it going?  Well, they've pulled a bunch of labs and we're waiting on x-ray.  Oh, and he's on his home vent settings and all.  And kicking his feet over the side of the bed, and laughing at us.  We're all hoping this was a bad asthma attack.  If so, we may actually be home tomorrow.  That would be nice.

If we are, you're still welcome to stop by.  And if you want to bring a balloon or two to let off, that would be great.  I don't think I'm going to make it out to pick up any.

I'm not even quite sure what's in my hospital bag this time.  Hopefully, we won't be here long enough to really find out.  Stay tuned, it's never dull around here.

“In preparing for battle I have always found that plans are useless, 
but planning is indispensable.” 
― Dwight D. Eisenhower

Sunday, June 8, 2014

It's Birthday Time (Again!)!

I can't believe it's almost here.  His fourth birthday.  Yeah, pretty crazy.

I look back at the past four and a half years, and I can't say how very grateful I am for them.  I have so many thoughts running through my head.  Be grateful you can't hear them.  They really don't make much sense right now.

When we first got his diagnosis, when we were told he probably wouldn't take a breath in this world, the news stole my own breath away.  Dr. F. told me she would do whatever she could to try to help us meet him.  She told of living in the hospital herself one time for three days, monitoring a mom to determine if they really had to take her baby early, if she was going to pass before birth.  And she was able to give that mom three precious hours with her princess.

Three hours, my own heart wanted to stop.  I couldn't imagine, but that seemed so much better than nothing.  I quickly learned to search out stories of children and families on the internet.  I also soon learned that I had to give myself some limits.  At the time, I would read anyone's story as long as the baby lived four months.  I'm not sure how I came up with that marker.  But it seemed to me that if we could just get four months, four beautiful, precious months, that was a long time.

Now it's been four years, 12 times that long, and he's still going strong.  And it's not nearly long enough.  He's changed me.  He's changed our family.  Sometimes I miss the old me, but not that much.  I think I'm a better person, more centered, more compassionate, more willing to overlook the things that don't really matter and to fight for the things that do.

But anyway, back to Aaron.  We're doing things a little more low key this year.  We would still love to see you.  Or if you can't come, please send me a note about how Aaron has touched your life, how he's taught you.  That means so much. 

But if you have some time next Friday, please stop by.  We'd love to see you, especially in the evening.  I'm thinking sometime between 6:00 and 8:00.  But if it it's easier a little earlier or later, please come then.  Stop by and wish him a "Happy Birthday."  There will be cake, really yummy cake!  Come enjoy a piece with us. 

(And by the way, if you're reading this, you know him "well enough" to stop by and say "hi."  It doesn't matter how "well" you know us.  We'd love to see you.)

So don't forget:
Friday, June 13th, 6-8 p.m.  
530 Silver Lane
Alpine, UT 84004

We do not remember days; we remember moments.  
~Cesare Pavese, 

Wednesday, June 4, 2014

Fun Times with Blood Work (Not Really)

Once again, not sure this will  make a lot of sense, it's liable to be a rambling sort of post.  And long, too.  You've been warned...

School is out, and the madness has (sorta) slowed down.  But in addition to all the great things that have been happening, like the ones I detailed last time, there has been some worries and concerns for Aaron going on.  And maybe (probably) it's a good thing we had so much happening because it forced me to focus on something besides more "unknowns."  Those who've been following his facebook page have seen a bit of it.  But for my own unraveling of thoughts, and for the rest of you, here's the story:

The Thursday before Memorial Day, as I came home from carpool, his nurse mentioned that he'd had a bruise on his chest she hadn't seen.  The bus was here, and I tucked it away in the back of my mind to check it out.  (By the way, the back of my mind has so much junk in it, that it rivals one of those sitcom closets, probably not the best place to tuck thoughts.)  Yeah, it kinda got lost.

Thursday every one of our kids was performing in one of four different performances, starting at 10 in the morning and finishing about 9:30 that night.  And Friday morning, I had carpool again.  Needless to say, my nurses were happy to be dressing/undressing him.  And I was glad they were there to do it.  But I didn't see his chest wall.

Friday night about 6 p.m., I went to put his jammies on him. Yikes!  The thing was the size of a half-dollar!  And there was also a small lump just to the right of center that was palpable.  Great!  Office is closed and it's a holiday weekend.  Gotta love my brain.  I got thrown right back to when I was a new mom and Deborah had RSV.  I sat up all night, willing her to keep breathing, not thinking that there was a ped on call and an ER only a mile away.

This time, I forgot that the ped's office had night time hours, and Saturday morning hours, AND even though Monday was a holiday, they had an after hours staff in Monday morning as well.  Yeah, didn't realize that until Monday afternoon.

Anyway, bright and early Tuesday morning, we were at the office seeing a PA, because I wasn't patient enough to wait for a later appointment with the ped.  In the meantime, a few other bruises had shown up on his back and thighs, but nothing like the one on his chest.  The PA was also very concerned and actually went and got the ped to come look.  Can I say, the looks they gave each other, and the words that weren't said were not very comforting?

So off we went to get labs, and let me tell you, the six hours between the draw and the phone call were very loooooong hours.  But the labs came back mostly "okay."  Some of the values were a touch high, pointing to a possible vitamin deficiency, and his platelets were low, and lower than the comparison value drawn in April.  Okay, so watch, wait and repeat in one week.

Fast forward to this Monday.  There have been a few more bruises, but not a lot, so we repeat the labs.  This time, I also got a copy of last weeks labs printed out.  When I called for the results, the nurse was able to give me numbers, but not allowed to interpret them until the doctor wrote it up.  Most of them were the same: either normal or a touch high.  But not those platelets, those little things that cause you to clot when you're bleeding.  They're down, again, and in my opinion, by quite a bit.

Quick note:  normal platelets are 150,000-400,000 but usually written as 150-400.  April was 166, the first draw was 110, second was 85.

When I didn't get a call from the doctor, I called in about 8:30 to find out what was happening.  The after hours nurse told me I'd have to wait, but she didn't see anything concerning at all.  Now, I try to keep Mama Bear in check, but I was scared, and I was concerned.  And I had his labs in front of me.  So I told her I disagreed, and suggested that she do something to contact someone because I wanted answers.  She said she'd run them past the PA that was in and call me back.  Good!

Um, except my heart dropped a bit more when the phone rang ten minutes later and my son brought it to me saying it was Dr. K on the phone.  We went over his numbers, and he reassured me that the ugly stuff (think leukemia here, I know I was) was not on the radar.  While his platelets were low, his red blood cells and white blood cells were smack in the middle of normal.  So he was going go consult with rheumatology, but felt that the body might be just having a problem with the platelets, and the fix might be pretty simple.

Well, Tuesday morning, I was sitting in the temple waiting for the meeting to start and starting thinking that I wanted to get copies of all of Aaron's labs over the past while, just to see what trends were doing.  I love inspiration.  About that same time, Dr. K was doing that exact thing.  When he called me a couple of hours later, he had gone over every single lab for the past two years.  And yeah, we might have figured things out.  At least we think so.

Aaron has always been low.  In fact, his only "normal" platelet level was that one in April.  And he was even lower in August (blood infection) and in October (really bad bout with rhino).  And apparently, sometimes platelets struggle after a bug.  So we're going to watch for another two weeks, barring any really nasty bruises, repeat the labs again, and then have to make the decision about his surgery that's scheduled three weeks out.

'Cause ain't nobody wanting to do surgery on someone who doesn't want to clot off.  But he also does need it, like really needs it.  We'll be checking for some other particular nasty issues in his ears because right now, he gets ear infections every 4-6 weeks, almost like clockwork.  Plus he now has two cyst-like growths on his thoracic area, one just below his collarbone and the other on his sternum.  Yeah, better for him if they're in a jar and not in him.

With his teacher, Ms. K.

Last day of school.

So I've had a lot of ups and downs in my emotional arena over the past couple of weeks.  If he doesn't resolve, we'll add yet another specialist to his repertoire.  But I'm hoping he does.

Hanging with big brother, playing the guitar.
And what does Aaron think of all of this?  Well, he's being Aaron.  Having fun, hanging out, going places.  Yeah, pretty much life as usual as far as he thinks.  What a blessing this kid is.  He knows how to find joy in his journey.  So grateful he brings the rest of us along on his trip.

Being grateful in our circumstances is an act of faith in God.
Elder Dieter F. Uchtdorf