Living Life

Aaron made it home on Thursday.  Between steroids, restarting his diuretic (don't get me started on that one), and simple Tincture of Time, he decided that breathing was an okay activity again.  And because the one thing we know we don't know is how much time we get with this little man, we needed to make some more memories.






So on Friday, we loaded up the big van and took everyone who was available to the zoo for Dream Nights.  We've been every year since Aaron was born and as always, it's a lot of fun.  For one night, the zoo hosts families whose children are chronically ill or have special needs.



There's dinner, face painting, characters, animals (duh) and lots of other families who fight the same battles day in and day out.

Aaron had a great time!  He was a giraffe this year.  Andrew dubbed him "Jeff, the Jaff," and claimed "Puff, the Wuff" (he was a wolf) for himself.  So he's been an orange tiger (twice), a dragon, a bear, a white tiger (I think) and then the giraffe.  His first year I opted out of doing the face paint.  Still too skittish.

Waving to the lions.

It was quite the feat getting ready to go though.  This is an "off" month, meaning we don't have to do two of his inhaled meds, so that part was easier.  He ate while we ate, and I gave him his meds, except the one I managed to forget in spite of all my planning.  Then while we waited in line for face painting, we did his inhaled medications.  All in all, I took up 12 different medications, 3 inhalers and 8 syringes pre-filled.  Yep, and that's a simple three-hour trip.  Gah...



 

That handsome Sousa player is mine.

Saturday morning brought a challenge.  Joseph marches with the high school and had a parade.  Who doesn't like a good hometown parade?  Local businesses, schools, candy, fun times!

Except while I managed to keep him "with me" during the sirens, there was also a military vehicle that was shooting blanks in addition to it's siren.  That was too much.  Last year the noise scared him and he cried.

Waiting for the parade to start.

This year he seized.  Seven minutes is a very, very, VERY long time to try to help your child.  I knew that EMS was right around the corner, but while his heart rate shot up and his sats went down, they were still within manageable limits.  And frankly, they would have transported him to the hospital, he would have been given some meds if he hadn't stopped by then, and they would have told us to follow up with his doctor.  We've already got an appointment with Comprehensive Care in another ten days, so really, 911 wouldn't have made much difference at that point.  (Although past ten minutes I would have enlisted help.  He just squeaked by.)

My cute tree hugger.

Saturday evening we had another picnic just a few miles down the road.  Michael thought the huge trees were incredible, and when we got home, Andrew decided to have some fun.




Aaron's big kids are just awesome!  I tell people Aaron has big brothers because they run with the wheelchair.  Mom doesn't even run without it.  He thought the spinning was the best thing ever!

And I'll put this out there in part because I use this blog to document and keep track of things.  Sunday night, Michael noticed that Aaron's pupils were uneven.  When he drew my attention to it, yeah, it was pretty obvious.  The right one was very small and non-reactive.  The thought is that it was residual from the seizure, or he had another one that we missed.  I'm afraid we're going to have to start chasing these things and try to figure them out.  I really, really don't want to deal with seizure meds.  There's not one out there that doesn't have ugly side effects.  But seizures in and of themselves are awful.  Just not something I want to think about.

And me?  Well, I've been trying to play catch-up on everything I was going to get done before he landed in the hospital.  I finally started making some onesies for Aaron.  He's about a size 7 and those things start at about $18 each for that size!  CRAZY!  I made him the floppy hat he wore at the parade.  The boys are creating their cowboy hats for trek coming up.  We got some vegetables and flowers planted, and are hoping the deer are willing to share the harvest with us.  I'm trying to get some kind of summer schedule put together for the kids here at home, and today I get to make an ice cream cake for Andrew, since he was supposed to have a birthday party last week, but yep, we were in the hospital.  At least it's only a week late, right?

So we're living life, sometimes sprinting, sometimes stumbling, as best we can.  A sweet friend put it so well when we were talking at the zoo.  She's lost two children, and a third is on hospice and not doing great, but he was there.  "If this is the last memory we get to make, at least it's a good one."  And we'll keep on making memories as long as we can.  

Memories are the treasures that we keep locked deep within the storehouse of our souls, to keep our hearts warm when we are lonely.

Becky Aligada

A Work in Progress

A couple weeks ago I got together with a bunch of other heart moms for dinner.  And a painting activity.  Talk about outside my comfort zone.

You should have seen her painting, the one we were supposed to recreate, more or less.

As we started painting, (and it was just the background) there were a lot of depreciating comments, and I recognized the mutterings around me echoed what I was feeling too.

No way I could make something like that.  Even the background wasn't turning out like she had it, and we hadn't gotten to the "real" painting.

But I was feeling a bit dark myself, and rebellious, and maybe not in the best place for feeling down on myself, or letting my friends put themselves down either.  So I said, "yeah, well, that's why she gets paid for this, and we don't.  But I bet she doesn't know how to hear a heart murmur, or tell if a kid needs more oxygen, or what to do when they do."

And you know what?  That's okay.  It's good that she can do what she does, and it's okay that we don't.  But our kids rely on us to do what we've been taught, and this was supposed to be a night of relaxation, or maybe discovery.

Her painting was a lot lighter than mine, but I wasn't feeling "light" at the time.  I made the sky dark,almost foreboding.  I was feeling it.  But then my words came back to me.  It wasn't all that way, and it wouldn't stay that way either, so I added in some lighter tones, just up in the corner, a bit of hope peeking through.  And you know, as I painted it, I was already thinking, "If I did this again, I would do it this way instead of that."  "I would make this line different, put that in a little bit of a different place."  And maybe we do the same thing in our own lives.  "I would say that different, I would go there instead, or maybe not go anywhere."  And that's okay, too.

There wasn't a single painting that looked exactly like hers, or like any other one.  But I can also say, I loved all of them.  They were all somewhat similar, a tree on a foreground with hearts, tones of reds, blacks and whites.  Kinda like all of us.  All of us in the room were bound together by hearts, hearts that weren't "perfect."  For some, it was our own heart, for many others, our kids.  We're on a journey we couldn't have known about before, but we embrace it, the fears, the joys, the triumphs and the sorrows all the same.

In the end, although I saw things I might change, I was pleased with my efforts.  And on the way home, I turned up my song loud, and sang it at the top of my lungs.

It's a work in progress, and so are we.

And Aaron, he's progressing, too.  The only thing we can come up with is that the cold he caught just over a week ago exacerbated both his asthma and his pulmonary hypertension to the point we couldn't help him enough at home.  We think we've turned the corner and are watching today.  It's been concerning for both me and the staff here that he has stayed quite high on his oxygen around the clock, whether awake or asleep, and he's slept a lot.  He's consistently needed 11-12, and sometimes a little more, liters of oxygen.  But early this morning we were able to wean him down to four liters, something very doable at home.  He bumped a little higher when he woke up, but he's still looking pretty good.  So we're hopeful that the end of this stay might be in sight.

Unless I accept my faults I will most certainly doubt my virtues. 

~Hugh Prather

Another Holiday in the Big House

Ready to roll yesterday morning.

It's been a busy two weeks.  Soccer games, last day of school, start of summer, you know, the good stuff.  We've also dealt with asthma (a LOT!) and a cold.  I've started in on some of the things that were put off while working, and maybe I'll get around to posting about them some time, or maybe not.  Sorry, that's just kinda how life is going right now.  I get these awesome (in my own mind) thoughts about posting and then it just doesn't quite make it out of the brain and into reality.

Cutest elephant in the jungle.

Anyway, here we are.  And "here" is back in the Hotel on the Hill.  NOT in my plans for this weekend, at all.  I mentioned he'd caught a cold.  We started seeing signs of it on Monday, but really, he weathered things pretty well.  Thursday afternoon was rough, really rough, but again, we managed to make it through with lots of suctioning and albuterol, and a few bagging episodes.  Thursday night was okay, and Friday was much better.  So I figured we'd take a few extra precautions and heading out on Saturday would work.

Saying goodby to a beloved teacher who is retiring. 

Initially, it did.  William's mom had asked him to take flowers to various family member's graves in three different cemeteries.  We started in mid-Salt Lake and then moved to the Salt Lake Cemetery with plans to continue on to Logan where his Dad's family plot is.  He needed a little more oxygen after an hour or so, but nothing too out of the ordinary, so I didn't even give it a thought except to revise how soon we'd need to switch O2 tanks.  I had plenty with us, so no problem.

But then we stopped for hot dogs before leaving Salt Lake.  And Aaron must have looked out and realized how close we were to one of his favorite places.  All of a sudden, he was in the 70's instead of high 80's.  I did some interventions, and nothing.  Did a few more with the same results.  I switched him back to his ventilator in hopes of opening him up a bit.  Um, yeah, try 60's instead of 70's.  (Someone wasn't reading his script.)

View from Salt Lake City Cemetery

So I pulled out the bag and started bagging him.  It still took about 15 minutes to get him back into the mid-80's.  I told William he needed to drop us off at the hospital and continue without us.  Andrew took over bagging while we drove, kinda like he did just over a year ago.  He's a pretty awesome big brother.

Hanging in the ER.

Once we got here, they called a "red patient admit" again.  Hate hearing that, and knowing that means they're rallying the forces 'cause he's in trouble.  Glad they're all there, don't get me wrong, hate that they're needed urgently.  It still took a while (probably only 15-20 minutes, but still) to get him stabilized.  Did x-rays, ran labs, it looks like the rhino is still the culprit, although he's really not too symptomatic.

For a while last night, it looked like he might end up on the higher hospital vent with a percentage of oxygen flowing instead of the rate of oxygen that we use, but he did manage to avoid it.  He had a pretty good night.  In fact, the team is pretty certain it's time to send him to the floor.  I'm very leary of that plan, and I've weighed in.  They still want to move forward.  I guess we'll see what happens, right?

Life keeps throwing me curve balls and I don't even own a bat.

At least my dodging skills are improving.

Jayleigh Cape

It's Gonna Be Okay

One week apart, and yeah, the first one was earlier.

I've had so many thoughts about Mother's Day this past week, where to take this post, what to say.

My sweet husband orchestrated a very thoughtful lead-up to Mother's Day.  Every day for the past 9 days (yep, nine kids, count 'em) I was given an envelope with a personal note from a child.  Even my missionary in Canada sent one, and somehow I missed it coming through the door.  Probably something to do with the craziness of my life lately that I missed the return address on a personal letter addressed to his dad.

I felt the love, and the reality.  I even teased my 13 year old about his.  He wrote a delightful poem in which he told me twice I was "the bomb."  Now, I know that's used as a wonderful endorsement, but I did ask if that was because I was always "blowing up" lately.  He grinned.

Anyway, back to life.  I'm going to be real here.  There's been some work going on in between my ears lately, hard work.  And so much more to be done.  It's been a rough week.  Okay, a rough few months.  Aaron is as happy as ever, but his body isn't quite as cooperative.  I've been sick, a lot.  I've missed out on so many things, sometimes because he's not stable, sometimes because I can't take the chance of passing along whatever the latest goo is that I've had. And it's hard.  I miss being with people, I miss my friends.  It's hard to tell my kids that yep, once again, something's not going to happen because we just can't take those chances with Aaron.

And then there's today.  I got up and my nurse (fabulous nurse!) gave me report.  He said we'd call it a "win" because we were still at home, and not in the hospital.  Aaron slept all night last night, but he was still battling oxygen sats.  When he's asleep is when we gain ground.  Not last night.  Nine to ten liters all night.

On Facebook, I found a sweet girl who lives down the road was LifeFlighted last night.  Now, the paramedics in our area are all Advanced Life Saving certified, and they're all familiar with trachs and vents and such.  They don't LifeFlight on a whim.

A woman at church who is battling her own set of challenges stopped me and laughed and talked about how God uses our situations to teach us patience.  I think in my case, He knew he needed a 2x4 to hit me over the head with.

This thing we call life is HARD!  Really hard!!  And sometimes it hurts.  Sometimes we feel left out, alone, abandoned, like no one else quite gets it.  And frankly, they don't.  But that's okay.   And that's my new mantra, my new song, literally.

Piano Guys has a song, "It's Gonna Be Okay" that puts it all together.  They don't paint a picture of roses and sunsets.  It's real, it's raw.  Yeah, "doubt is a broken record that plays inside my head," "So many times now I was supposed to tap out, all the walls would fall down around me."  Reality.

BUT it's going to be okay, really.  "No matter what [I've] been through, here [I] am ...  no matter if [I] think [I'm] falling apart, It's gonna be okay."  Yep, it is.  Love the saying, "My track record for getting through bad days (weeks, months, years?) so far is 100%, and that's pretty good."

So I'll keep on working on those thought processes, work on remembering who I am, what I stand for, who I'm in this fight for.  It's gonna be okay.  And if you need help, too, listen to the song, turn the volume up high, and dance like no one is watching.  (And if they are, maybe they'll dance, too.)

Life is hard, but so very beautiful.

Abraham Lincoln

Bereaved Mother's Day

I live in the world of child loss.

It's a taboo subject, one we're afraid to talk about.  It's almost like if we don't give it voice, it can't exist.

But it does.  It's real, and the silence only serves to deepen the pain.

I've now been to more funerals for children than I have for adults.  It feels wrong, it hurts, and I admit, it's scary.

I love these parents, these souls who've given back their most cherished hopes and dreams.  I watch them, knowing that someday I'll be part of that awful club that no one ever wants to join, and knowing that when I do, they'll be there, waiting to hold me, mourn with me, and tell me that yes, somehow, inconceivably, life does go on.

Chances are good, better than good, that you know someone, a mother, who no longer can reach for her child.  Someone who won't get a phone call, email, or hug from their child next week on Mother's Day.

In the past week alone, two friends have joined this sorority.  One knew ahead of time, like I do, that her time would come.  The other did not.  Both grieve, and I ache that I can do nothing to help.  And even when you know it will happen, no matter how much time you had, it's never, never enough.

Reach out to her, say the name.  Let her know you haven't forgotten.  One of my biggest fears is that after Aaron passes on, his memory will, too.  He won't have children and grandchildren to tell stories about him.  He won't have a wife who will miss him.

When you lose a child, you lose a future.  So take a risk.  Yeah, she'll probably cry.  But you're not reminding her that her child died.  She knows that, she knows that in ever single fiber of her being.

You're reminding her that her child lived, and you remember.

There is no footprint too small to leave an imprint on this world.

Author Unknown

Neverland and Dashed Hopes

Getting excited about his echo

Last January our cardio surprised me with the idea that Aaron might possibly be a candidate for fixing his heart.  Obviously it was not without risk, huge risk, but still, worth considering. 

On Tuesday, hopes were pretty much dashed.  Echos, or ultrasounds of the heart, are used to estimate pulmonary pressures.  You know, the pressure between the heart and lungs.  Aaron's single biggest challenge.  While not exact, his echo looked pretty much like all his recent (meaning last few years) echos. 

So then we looked back at his last heart cath from two years ago.  That gives exact numbers.  And those weren't great.  In fact, as far as surgery options, they were downright bad.  There are some numbers called "wedge" numbers.  If they were to do a heart cath on most of us, ours would be about a 2.  For surgery, they like them to be 5 or less.  Aaron's were between 9.2 and 9.75.  Yeah, not quite within range.

We will do another heart cath in July or August, but they don't expect the numbers to be optimal.  At this point, I think I'll be happy if they're not worse.

Whadda ya mean, I can't "help"? 

I don't know that we would have opted for surgery.  You know, that whole "huge risk" and everything.  Could he survive the first surgery?  Could he handle the lower oxygen sats that it would cause?  Could his lungs relax further so he could have the second?  Could he survive that?  You can see where this is going.

But on the other hand, fixing his VSD would allow him to someday possibly (probably) get rid of his oxygen tanks, and his ventilator.  The freedom that would bring would be incredible!  No longer would we have to measure outings by battery life and tank limits.  I wouldn't have to carry an extra 25 pounds or so of equipment.  He wouldn't have to be tethered to tubes (although he doesn't seem to mind them). 

Having fun at brother's play, "Peter Pan." 
Our own little "lost boy" who will
"never grow up."

In reality, not much has changed.  We've been told for almost 7 years that surgery wasn't an option.  I sometimes wonder if in the beginning it wasn't his heart as much as it was his T18 diagnosis.   I think there was a time when it might have been a possibility.  I know that in his lifetime, doctors at our hospital have argued for and won the case for surgery for others in similar situations.  He's taught some wonderful medical professionals about the possibilities for joy and life and created some powerful advocates. 

But the truth is, he won't be able to benefit himself. 

Years ago, my father flew rescue aircraft with the Air Force in Alaska.  Their squadron motto was "That others may live."  I guess in a way, it might be Aaron's as well. 

“I suppose it's like the ticking crocodile, isn't it?

Time is chasing after all of us.”
― J.M. Barrie

What I Wish People Knew

Lately, it's become a "thing" to put up a Facebook post saying "What's the one thing you wish people knew about you?"  It's not a bad idea, but as I actually pondered this one, I figured no one really wanted my to hijack their post, and they probably weren't looking for the things I was thinking. 

Warning, this is one of those "therapy" type posts, and it's likely to be rough, maybe even a bit ugly.  And no, I don't need an intervention.  But sometimes, I think people look at our lives either as a jail sentence, or as if we're up on some kind of superhero pedestal.  Frankly, neither is true.  Mostly, special needs moms are just moms like any other mom.  We do what we have to, learn what we need to, and fight like dragons to keep our children alive.

When we got Aaron's diagnosis, I had no clue how to do this special needs life.  None at all.  I was scared that he would die, and scared that he would live.  The only "special needs" I'd done up to that point was more along the lines of honors and AP classes.  I had no idea where to turn, what resources were out there.

And sometimes, I still feel like that unsure, timid mom.  No, I don't wonder where to turn.  I've figured that out.  But it's more the things that come up.  When he's alarming over and over, I worry that I've missed something, and even more, that I haven't missed something, and there's nothing that can be done. 

People tell me I'm so confident, organized, energetic, "got it together."  But a lot of the times, that's just not true.  I worry, second guess myself.  I worry about everything, seriously, EVERYTHING. 

A look in my cupboards and closets will tell you that "organized" might cause laughter among those who live in my home. 

And "got it together"?  More like "fly by the seat of my pants." 

I miss a lot of things.  Lack of energy, lack of time, sometimes lack of motivation.  Sometimes it's lonely.  Really lonely.  Other people really don't "get it," what it's like parenting a child like Aaron, and parenting typical children and their needs along side of an Aaron. 

But then there are the really great parts, too, and the funny ones.  Like when your kid can keep his cool and force air into his brother's lungs for 30 minutes, and can't figure out why anyone thinks it's something out of the ordinary.  Or another one looks at the pulse/ox monitor and figures since he's feeling pretty good, the 86 must be his oxygen saturations.  Had to break it to him that if his sats had been 86, no way the ER would have let him go home.  That was his heart rate.  His sats were 94.  

So where is this all going?  I guess it's just this.  I'm a mom, just a mom.  But a mom who's had to learn a whole lot more than she ever thought she would. 

I speak medical fairly fluently, but I also speak heartache and joy.  I employ more filters than I used to, maybe because I've been around those who haven't, and I've learned it hurts when people don't think before they speak. 

Before Aaron was discharged from the NICU, we had to do a newborn CPR class, and I nearly lost it.  I just couldn't imagine breathing for my child when he couldn't.  Yeah, that was the part that broke me.  But now, I do, his siblings and dad do, and my nurses all learn as well.  And other than wondering how far it's going to go, how long we're going to have to do it, it doesn't bother me (much). 

I've faced down and gone through thought processes I NEVER imagined I could.  And I've come out broken, but stronger, for them.  I was talking with someone about funerals etc today and they asked me how I knew so much about the ins and outs.  I reminded him we'd been looking at one for seven years now.  Doesn't mean it's easy, just means I've had time to become educated. 

So I guess what I wish people knew was that I'm just me, sometimes overwhelmed, insecure and short-tempered.  Sometimes all put together and relaxed.  Not a superhero, not someone to be pitied.  Just someone trying her best (most of the time) and hoping to leave the world a little better than she found it. 

And if this has been too long (yeah, I tend to ramble, I know), just watch this brief video.  But go all the way through.  I can connect with so many of these scenes, somehow especially the one in the parking garage.  But I also know the strength of wiping the tears, believing, and moving forward.  Because as long as there's life, there's hope.  And that may be the strongest medicine of all. 

Learn from yesterday,

Live for today,

Hope for tomorrow.

Albert Einstein