Pneumothorax

It was not an easy, at home, fix.  Aaron has a pneumthorax, or air between his chest wall and his lung.  You know, outside the lung instead of inside where it belongs.  Fortunately for him, it's a small to moderate sized one and he's in the PICU where they are watching closely.  Ideally, it will resolve on its own within a few days or so.  If it doesn't, or it gets bigger, they'll decompress it. 

It seemed like for a little while he might hold his own with help from albuterol.  But then his oxygen use shot up again.  And again, we ended up having to call an ambulance to get here.  He was an angel on the way up, slept pretty much the whole way.  But as soon as we got here, the fun began.  As we were transferring from the ambulance gurney to the hospital one, he began to struggle more.  Sats dropped further, oxygen needs increased.  Then we had coughing, lots of coughing, but it was pretty ineffective.  Except that after a little bit, he started bringing up blood.  And then he popped a fever.  And he didn't want an IV, as in, his tiny veins did not want to give up anything at all.  So here we were, fever of about 101 or so (38.7 C, I think that's about 101), lots of coughing, some blood, and on ten liters of oxygen (as opposed to our 1-2 liters earlier this week) and still struggling to maintain 90% saturation rate.  Yeah, it was a good thing we were already here.  He's already had his chopper ride.  I told him he doesn't get another.

So we're back again.  It will be much harder to update than usual because I don't have the computer with me.  Usually I bring it so I can work while I'm here.  But I'm still out because of my shoulder and it's needed much more at home for homework and other things.  So I'll try to get an update once or twice a day, but I have to leave to go to the parent center to do so. 

Please keep our little guy in your prayers.  Right now he seems like he's in a lot of pain.  It just breaks my heart to see that silent cry.

Getting Sick Again

Aaron's getting sick again.  I hate the way it raises my heartrate just when he catches a cold, or starts having trouble with his feeds.  The last few times he's done this, he's tolerated it well enough to stay at home.  But still, I worry and start planning for the "what ifs".

He has two ear infections, much more gas in his tummy, slightly higher oxygen needs.  I don't think the frequency of his alarms has changed, but his activity level has.  Normally, when he's playing around, his movements cause the vent to think there might be something wrong.  Or he's wiggling too much for the oxygen sensor to pick up.  Now, he's sleepy or sleeping, and the vent alarms, or his oxygen dips.

Oh, and he's got all those fun secretions known as snot coming out of his nose, too.  When he's awake, he almost thinks it's funny to blow those bubbles, at least until I come after him with suction.  Yeah, not too fond of that.  At least he can move to try to get away.  I'm trying to be grateful for the small things.

Yesterday, the Wolf/Bear den combined for a field trip to the fire station here in Alpine.  Andrew asked the two guys doing the tour if either of them had ever helped save Aaron Peterson's life.  Both of them said they'd been here, on more than one occasion.  I'm so grateful for their help.  We have such wonderful medical personnel, all the way from the paramedics to the staff at PCMC.  But I wish so badly that we only knew them socially.

I love my bug with all my heart, but sometimes I long for the days when my baby would catch a cold and I'd try to figure out if they needed to be seen about a possible ear infection, or maybe we just needed to keep trying to chase them down to wipe their nose before they used a sleeve.  Now, I can see myself if there's an ear infection (he gets a bloody discharge) and treat it with the drops we always have on hand.  No, I don't miss hauling into the pediatrician's office.  I just miss that that was my biggest worry.

As for me, the prayers for my shoulder are certainly helping, as are all the things my family has pitched in to help with.  It's still painful, and I still can't work, but most of the time it's more of a dull ache.  And while I hurt when I wake up, it doesn't keep me from sleeping anymore.  That is HUGE.  We still don't have any answers yet as to why or how long it will go on.  Sometimes things move very slowly...

Guess What? Aaron is a Baby!

Chillin' on my way to
PCMC for a check-up.

I know babies and small children like to explore with their fingers.  And since their own body has plenty of little holes (ears, nose, mouth, etc) those fingers like to poke in there.  Well, I guess I never really thought about his trach stoma (the hole in his throat, you know) being one of those little holes.  But on Tuesday, when I was doing his twice monthly trach change, he decided to check it out.  Any idea how hard it is to put a trach in a stoma that a little someone is trying to put two index fingers in?  I didn't need two more hands to do his trach change as much as I needed two fewer!  But yeah, we were laughing about it.  You don't realize how grateful you are for those little, tiny, simple things, until you discover that you never expected to experience them.

Yesterday, Aaron went to trach/vent clinic for a check-up.  He's looking great!  He's 10.85 kg, or 23 lbs 14 oz.  He's essentially the same size as all his siblings at this age.  AND he's been tentatively cleared to travel this summer to see family.  All his doctors kind of shrugged and said, "I don't see why not."  YEA!!!  Now, as far as getting off the vent, well, that one remains a mystery.  Kinda up to him and so far, he's not talking.

Waving

Aaron has reached a new milestone, but  unfortunately, he doesn't want to perform for the camera.  Last week, William was waving at him, opening and closing his fingers.  Aaron watched for a little while, and then started doing the same thing with his own hand.  This is doubly exciting as most kids with T18 struggle to open their hands.  We've been working on helping him open his since the day he was born.  He repeated it again on Sunday.  But since then, he kind of just give me his cute grin that says, "That's funny, Mom.  Keep doing it."  So I'll just have to keep trying to catch him at it.

Playing soccer

He also has a lot of fun kicking his soccer ball around the bottom of the crib.  I wonder how many other 22 month old kids are getting in all their touches on the ball on a daily basis.  Look out Real Salt Lake .  We may have your next superstar.

Avery Lynn and her bucket list

I recently found a new blog.  In fact, the blog itself is new.  Little five-month-old Avery Lynn was diagnosed last week with Spinal Muscular Atrophy, a degenerative disease that will probably take her life before she is 18 months old.

She has a bucket list of things she wants to accomplish before she goes.  It's got a lot of the things you might expect on there, such as learn to play an instrument, celebrate a birthday, meet Santa Claus, be on TV.

But then there are some others that you might not think of.  Mow the lawn, play barbies with her cousin, take out the trash with Daddy, get an allowance, hide from Mommy and Daddy when they come home from work.  Play in the mud, talk to Mommy and Daddy.  Throw a tantrum in the middle of a department store.

These ones, they're the ones that get me.  What kind of miracles do we get to participate in each day?  It's the little ones that grab you.  It's the little things we take for granted.  The smiles, the hugs, the silly times and the frustrating times.  That's what makes a life worth living.  I remember the many, many times I wished my toddler would be a bit quieter so I didn't have to take him or her out of a church meeting.  Do you have any idea what I would give to have an active, rambunctious, LOUD 22-month-old to take out now?  So celebrate those moments.  Those ordinary, wonderful, life-affirming moments. And hug your loved ones.

Happy 22 months tomorrow, little man.  You teach us so much.

A Happy, Blessed Easter

Easter was, as always, a wonderful reminder of our Savior's love.  We were blessed to have all the kids home for Easter.  Mary came home on Saturday and the boys got back from the Ballroom Tour early Sunday morning.

I have not been doing well with my arm.  In fact, instead of getting better, it's been worse.  The doctor changed some medications which helps with the pain, but makes me feel pretty sick.  Also, Aaron had been battling diarrhea since last Tuesday.  Fortunately for him, he was able to keep his fluids balanced, but we were changing LOTS of diapers (not to mention clothes and bed sheets).  So Sunday morning, things didn't look real great for all of us to be at church.  But along came another one (or two) of those small miracles and by late morning, I felt like I might be able to make it through services, and Aaron slowed down as well.  So off we went.

Two comments in particular hit me on Sunday.  The first was, "In the depth of winter, through Christ, we find an invincible summer."  I love summer, full of life and light.  And that so perfectly describes our hope in Christ.  The second was, "It will all be okay in the end.  If it's not okay, it's not the end."  I needed that, too.  Because right now, it's not okay.  Sure, we are blessed immeasurably.  But this is not the end that I'm dreaming of.  As I watched a video about Easter with Michael, and we spoke of the Atonement and the Resurrection, we talked about how someday Aaron will be made whole.  Someday he will run and play and kick a soccer ball and play catch.  He'll laugh and enjoy ice cream.  And that will be a beautiful day.

But for now, we keep on plugging along.  Right now, I'm doing the one-handed typing, because I can't move my right shoulder, even enough to be able to type, without excruciating pain.  And if Aaron's equipment fails, he doesn't breathe.  And yeah, sometimes kids squabble.  Not mine, of course, they're perfect.  But I have heard that some families deal with that.  (Here's hoping mine don't read this.)

My very favorite scripture is one I found during one of Aaron's hospital stays.  I remember it was a Sunday, and I think it was a Sunday that we'd been hoping would find us on our way home.  Instead, if I remember right, we were contemplating a trip back downstairs to PICU.  But either way, I know we weren't leaving yet, and had no idea when we would be.  This scripture spoke directly to my heart.  Abinadi is teaching about the Plan of Redemption and says:

7  And if Christ had not risen from the dead, or have broken the bands of death that the grave should have no victory, and that death should have no sting, there could have been no resurrection.
8  But there is a resurrection, therefore the grave hath no victory, and the sting of death is swallowed up in Christ.
9  He is the light and the life of the world; yea, a light that is endless, that can ever be darkened, yea, and also a life which is endless, that there can be no more death.

Mosiah 16: 7-9   

After all, the beauty of Easter lies in the fact that the tomb was empty....

Fun Easter Pictures

Happy Easter

A Challenge, or Two?

Hi all:

This will of necessity be short.  I have to stop before my shoulder seizes up on me again, but I wanted to let people know where we are:  at home!  Yea!  Still at home.  It looks like maybe we've weathered a General Conference without going in.  No, General Conference itself doesn't have anything to do with Aaron being sick.  It just seems that each time it rolls around we're either already in, or heading in.  Not this time!

Our big challenge right now is my challenge.  I tripped mid-February over one of his cords and injured my shoulder, my right shoulder.  It would start to feel better and then I would stress it again.  I put off going in, hoping it would fix itself.  No such luck.  A week ago it hurt so bad that I finally took myself to an after-hours clinic.  The doctor diagnosed tendonitis and sent me for physical therapy and medication.  Between the two, the weekend was actually almost comfortable.

But then on Monday, I finally got around to lowering several sets of ears (cutting boys' hair).  Yeah, probably not a good thing.  Working has also stressed the muscle and tendon.  I had been on half-loads at work, but by Tuesday, even that was too much.  When I tried to go to physical therapy, I couldn't even reach forward to put the key in the ignition with my right arm.  So now I've had to take time off work as well.

Anyway, it is improving, slowly.  I'm hoping that by next week I can be back on half-work and then full-work by the following week.

The second challenge is that Aaron may be starting to brew something.  He's been so cheerful and happy, and working so hard with his therapies.  But today he's not done as well.  He's been more tired, more junky sounding, and had a LOT of tummy bubbles.  And oh yeah, we've had "bucket patrol" since Saturday in a couple of the kids' rooms.  So here's hoping that it's just a tiny bump, and that he gets over it quickly.  Because not only do I NOT want to visit his "vacation home" north of here, I really don't want to try to do it one-armed.  So, please, keep us in your prayers.  I know you already do.

By the way, I think I enjoyed General Conference more than I ever have before.  I started a blog post on it and there are lots of thoughts to follow.  I just can't type very long at all before it hurts too much to go on.

What to expect when expecting a child with Trisomy

Aaron and Michael on Trisomy 18 Awareness Day 2011
3/18/2011

Here is another video, done by another amazing mom.  Aaron appears several times through here, including one precious shot of his hands holding our wedding rings.

This is in similar format to the popular What to Expect When You're Expecting book.  As parents, when we're given the diagnosis of Trisomy 18 or Trisomy 13, we are told not to expect much of anything.  In fact, what we should "expect" is to have our baby's funeral planned out, not their homecoming.  My doctor could not have been more compassionate or understanding, but she also said there was very little hope.  What she DID say, many times over as time went on was, "Aaron is writing his own book, and we're so glad he is."  No, he hasn't followed the "textbook," but in reality, which one among us does?   The "average person" is not really average at all.  There will always be many places that they excel ahead of AND fall behind their peers.

Within a couple weeks of our diagnosis, I made a rule for myself.  I simply would not read the story of anyone whose baby had not lived at least four months.  I know there was much I could have learned from others, but I wasn't in a mindset where I was able to learn.  And when you're told that chances are your baby won't take a breath, four months seems like a very long time!  I did as much research as I could, but still felt so along on this journey.  I will forever and ever be grateful for those others who have walked and are still walking this path with me, for their love and support.  And I hope I can offer some of mine to others along the way.

And I guess I should admit, I have a special bias toward the picture she chose as the thumbprint for the video.  One of my one or two thousand favorites...

We Are The World Of Trisomy 13 & 18

This is a beautiful video put together by a friend of mine. These faces are
so beautiful. So many I recognize in here. So many prayers said for them
and by their parents for Aaron. So much love and support. We may not
have ever met in person, but love and prayer hold us together across the
miles.