Maybe Slow and Steady Will Win the Race?

Yesterday was our six-month appointment with cardiology.  It went relatively well.  I think my head may have been in the clouds, but I was hoping there might have been some improvement in his heart function.  There's wasn't.

But on the other hand, it wasn't any worse.  So he's considered "relatively stable."  Which means that yes, it's still an issue, a pretty big one.  Still can (and probably is) causing further damage, but it's not progressing quickly.  His heart is still big (gotta be to hold all that love, right?) but doesn't appear bigger than before.

The long and short of it is, it's probably not going to get better unless he can get off the ventilator, and we just don't see that happening yet.

We didn't make it to his pediatrician because cardio was running pretty far behind.  So we'll see him on Friday, but really, that's pretty basic.  They need to measure and weigh him and feel his thyroid.  We've got his latest labs in and they look good.  Not expecting any issues there.

I did spend some time on the phone yesterday with his pharmacist.  We're going to move his newest asthma med, the one we think is giving his tummy trouble, to his last main feeding at night.  Right now, he gets it on a fairly empty stomach during the night.  The hope is that by giving it with food, and right before bed, he'll tolerate it better and sleep through most of the yucky part, kinda the way I dealt with the lovely pre-natal vitamins that made me feel lousy.  By the time we see Dr. K on Friday, we should have a good idea of whether that's working or not.  Really hoping it is.  I do love it when we finally come up with simple fixes.

So here's my hope and prayer, and if you could include it in yours, too, I'd be grateful.  Aaron's lungs need to be stronger, and he needs to start being able to wean off his ventilator, at least part time.  We'll be working even more on his stander and other therapies to continue strengthening his little body.  It's going to be a long-term project to get him off of it.

Usually vent weans don't happen during the winter.  But in talking with his doctors, we think part of his asthma may be related to environmental pollens and allergies.  If so, it actually should be a little easier in the winter, when all the pollens are frozen.

So once we get the tummy trouble under control, we may be trying again.  We've been down this road before.  Even made it far enough a couple times that I came up with a complete weaning schedule and calendar.  Unfortunately, I've not been able to get Aaron to agree and sign off on it.  Maybe the third time's the charm??

  There is no telling how many miles you will have to run while chasing a dream. ~Author Unknown

Happy Thoughts

You can see his gap-toothed grin.
Somehow, it was that upper middle
tooth that was so loose that it needed
to come out in the OR.

 Tomorrow Aaron has doctor's appointments.  Tomorrow I worry.  Not a lot, but some.  He's having more trouble with his feedings over the past several weeks.  I worry that he's developing an intolerance for his formula.  That the retching that's coming with almost every single feeding will impact his already fragile lungs and heart.  And I worry that his heart disease has progressed (more than it should have) in the past nine months.

But the good part is, when Dr. M told us to come back this fall, he also laughed and said he knew he'd see us before then.  'Cause this kid has NEVER managed to make it as long as he was "supposed" to between cardio visits.  But this time he did.  Still, I'm concerned about what tomorrow's EKG and echo are going to reveal.

But there's nothing I can do about that tonight, so tonight I'm going to focus on the happy things.  As I'm typing, Aaron is "singing" in the next room, telling stories to his elephant and other toys.  He's happy, so I'm happy.

He's had a great time at school.  He smiled through church.  Today was the Primary Program (annual children's program) at church. Each child has a part.  But with Aaron being nonverbal, plus that lovely respiratory garbage going around, we didn't put him on the stand with the others.

However, I will always be grateful to his leaders for recognizing that he IS a part of our Primary, just like every other child.  They gave him a part and Michael acted as his voice.  His class's theme was "I can show my love for my family by _______."  No contest there. The word for Aaron was "smiling."  Except I have to admit, I teared up along with my smiles.

So here is what I'm focusing on tonight, trying to shove those nasty dark thoughts away:

Cute little sweetheart from church.
Whenever she saw Aaron, she would
come right over for me to pick her up
so she could see him.

Playing the drum during therapy at school, and loving it!

Our annual local SOFT picnic.  And we didn't
end up in the hospital this time either!  Each
of the four children pictured have either T18 or T13.

Doing a "cause and effect" therapy with Michael
on the tablet that someone so very generously
gifted him with.  We use it SOOO much!

Watching Sesame Street on that same
wonderful gift.

Happiness is a form of courage. ~Holbrook Jackson

I Miss My Innocence

Sometimes I miss my innocence.

On Wednesday, Aaron went into the OR.  He was having a dental cleaning and an ABR (hearing test where they measure hearing using brain waves).  Both went really well.  He's now lost his first tooth (what??) and his hearing has improved quite a bit.  He still has hearing loss, but it's moderate loss instead of severe to profound loss.

But it was what happened afterwards that tugged at my heartstrings.  Because of his trach and ventilator, Aaron comes out of anesthesia really easy.  He just kinda wakes up.  It's nice.  But not so much for the little one next to us.

She was not impressed AT ALL with what was happening. And I don't blame her.  Years ago, (like 20), one of my own had trouble (emotional, not medical) coming out of anesthesia.  I was told that people, especially toddlers, tend to relive those last few moments of going under when they're coming out of it.  Maybe, whatever, the long and short of it is, it's not terribly fun.

And like most toddlers, she wasn't too thrilled with the IV that was in her either.  Once she was awake (and everyone knew it 'cause of the screaming) they invited Mom back.  She was a young mom, and my guess is, not that medically experienced.  And she was almost as unhappy as her daughter.  I know what upset her the most was that her daughter was upset.  And since the IV was causing the issues, she wanted that OUT!  They couldn't do that.  It was way too soon to not have quick access.  She was mad that she wasn't called back before her daughter woke up.  When they tried to help her understand that they couldn't have her back there until the breathing tube was out, that was kinda the last straw.

She didn't want her daughter to have had a tube in her throat.  She didn't want the IV.  She didn't want her upset, so just fix things, NOW.  And I felt so sorry for both of them.  They hurt so much.

But at the same time, I was a tiny bit jealous.  I don't think I knew when my oldest ones had surgery those many years ago that they were going to be intubated.  Yeah, they probably told me, but it went right over my head.  I didn't understand the need for IV access, or what happens if you can't get quick access in an emergency.

I was young, but more, I was innocent and naive.  I didn't realize (not really) that there were things medicine couldn't "fix," at least that would touch me or those near me.  I didn't know what happened in a "code blue", or that I could and would be prepared to do CPR on my own kid.  Or that I could call 911 and be able to keep a totally cool demeanor, because I'd done it Too. Many. Freaking. Times.  I didn't realize that my living room would be turned into a mini-ICU, and that I would not only know how to run those crazy machines, but would become comfortable with them.

I miss heading into the ER for something (relatively) minor, and waiting (and waiting and waiting) while others who need help more go ahead.  Instead, I've witnessed as we've been the first ones, with a room so full of people I couldn't get close enough to touch him, and they move as a well-oiled machine.  Having so many people focused on your little one is both comforting and terrifying.

So yeah, while I can speak medical-ese, and I count some of the staff at Primary's as good friends, I sometimes miss that person I used to be.  The one who didn't understand that life can turn on a dime.  The one who had no clue how to get to the children's hospital.  But maybe, hopefully, I'm more understanding, less quick to judge than I used to be.

And I hope, I hope desperately, that this young mom gets to go home, rant about how awful things were, and never has to realize how vital it was that things went in the order that they did.  Sometimes ignorance really is bliss.

The pleasures of ignorance are as great, in their way, as the pleasures of knowledge.  ~Aldous Huxley

Trying to Stay Healthy

This morning finds Aaron and I at Primay's for his dental cleaning and hearing test. Aside from the fact that I'm a little jealous that he gets to sleep through his dental appointment, I'm a little concerned about being here at the hospital.

See, in case you've missed the news lately, there's a really nasty respiratory virus going around. Docs haven't seen this one since the 1960's!  That's 50 years, folks.  That means that anyone with kids and the majority of people in close contact with kids have essentially no immunity.

This particular nasty has the potential to do to healthy kids what a regular cold does to Aaron:  start off and within a few hours cause severe respiratory issues.

Anyone else out there concerned, worried, (paranoid, totally wigged out) about this one?   I'm trying  to be protective while still letting him experience life.

So at least while at the hospital, he'll be wearing a mask. And we may extend that to other places, too.  And while I've got friends up here (someone's little one is always here) I won't be visiting. We're getting out as soon as possible, trying to avoid even breathing any more than necessary!

And please, please, please, if you're sick, stay home!! Get a flu shot. No, it won't protect you against this one, but the flu kills people too.

And enjoy Aaron's cute mask. He's actually willing to wear it. Maybe because it's so easy to chew on that way.

The greatest wealth is health. -- Virgil

School Days, School Days, Dear Old Golden Rule Days...

For the past two weeks, I've gotten up and thought, "I need to get a blog post up."  And when I crash in bed at night it's, "well, maybe tomorrow..."  So this is long overdue, and so many things that need to be addressed.

Our town parade where we saw our paramedic friends and waved at them as they went by.  A wonderful blessing when someone gifted Aaron with a tablet that he can use for therapy.

And just "life" things that we're enjoying.  The annual SOFT picnic, an upcoming trip to the OR for a hearing test and dental cleaning.  (Think my dentist would consider putting me under to clean my teeth?)

But this one is going to be about school. Yeah, Aaron is back in school and loving it.

Heading out on his first day of school.

Why does Aaron go to School?

Some people wonder why a four-year-old severely handicapped kiddo would even go to school.  Well, do you know how to teach someone how to sit up, or bear weight on their legs?  Or even how to roll over?  Any ideas on how to unlock the brain of a child who would like to communicate, but has no words, and not near enough dexterity to sign?  Yeah, me either.

Working hard on standing, and even moving a little!  He propelled himself forward using his hands on the wheels, and was so proud of himself!

I mean, yes, I taught my other kids these skills, but their bodies, and more specifically, their muscles, were already strong enough to do it.  With Aaron, we have to "turn on" different muscle groups.  And frankly, I have no idea exactly which muscles are needed for sitting, standing, rolling over.  Do you?  But his therapists do.



So he goes to school.  It helps that he's got a nurse who is well-versed in his care and loves him that goes along.  And he has a wonderful time.

Homework:  

Continuing to work at home on strengthening his legs.  Plus playing with his toys teaches cause and effect and helps with hand-eye coordination.
 

Man’s mind, once stretched by a new idea, never regains its original dimensions. ~Oliver Wendell Holmes

He Did It!

Aaron did it.  He finally did it!  He caught a cold and We. Stayed. Home!!

Disclaimer here:  from what I felt after he gave it to me, and the siblings felt who gave it to him, it was a pretty minor, mild cold.  But hey!  I'll take it.

Last Saturday his eyes were pretty teary.  No, he wasn't crying, but they were a bit red and swollen and runny.  (Okay, that sounds weird.)  Sunday was a bit more, plus I started suctioning him and he was needing a little more oxygen.  Oh, and our nurse was out sick that night.  So Aaron and I got to "play" during the night.  That means, I tried to make the room as dark as possible so I could sleep on the floor, and he worked really hard on finding as many rattle toys as he could in his bed to keep me awake.  Whatever.

By Sunday night, it was obvious that he wasn't going to be making it to school on Tuesday for his first day.  Monday, I attended the funeral for a friend's sweet eight month old.  Precious Ryder was born with a heart condition.  In his short life, he had three open heart surgeries and was listed for transplant a month before he passed away.  Aaron had to go with me because he was sick enough that I wasn't leaving him with anyone.  And yeah, we ended up spending the service in the hallway because he needed help.

Tuesday was about the same, maybe a little worse. I think we hit the peak probably Tuesday.  By yesterday (Thursday) he was doing really well, and today, Friday, he'll finally get on that big yellow school bus and start his new school year.

So what did it take to keep him home?  We did lots of albuterol, lots of CPT (chest physio therapy, also known as beating on the baby, or in his mind, spa treatments.  Yeah, he really does love it, really!).  Combined those with much more oxygen than normal, and somewhere each day, bagging him between one and three times to force his lungs open a little more each.  And of course, lots and lots and LOTS of suctioning.

But he did it.  He beat this one.  I'm just hoping that this business of missing the first day of school doesn't become a pattern.  But if it does, oh well.  That means he's still here, still with us.  And I'll take that.

A bend in the road is not the end of the road... unless you fail to make the turn. ~Author Unknown 

Trach Plug (Ug!), First Day of School, and a Beautiful Moon

First of all, big shout out for the first day of school!  Everyone got up (almost on their own!) got ready and got out the door on time.  And Mama actually got real "first day of school" pictures of everyone.  Most years recently, someone's had their picture taken after school, or on the second or even third day.  We call those "first week of school" pictures.  Hey, it happens.

Notice how Aaron's taking all this in stride, or dream!  He doesn't actually start 'til next week, and he's enjoying a really nice lie-in today.  In fact, it's after 10:00 and he's still sleeping peacefully.  Kid better get it in while he can.  Next week the bus comes and he'll be back in school with the rest.  A week after that, and Deborah starts at BYU.  Kinda crazy.

Now yesterday, though...  Ever had one of those experiences that you hope NEVER happens again?  Yeah, this was one of those.  Matthew and I got home from getting his driver's license (yea! another driver to help out) and as we came in, William was calling me into Aaron's room.  He was breathing funny.  His numbers all looked good, and his color did, too, but he was pretty noisy.

I started looking at things, listening to his lungs.  Aaron has the ability to push air up past his trach and out through his nose and mouth (like us!) and that sometimes causes a kinda whistling noise.  But you check that out by listening to his lungs and then to his cheeks.  If it's louder in his mouth, blame it on the leak.  If it sounds louder in his lungs, look further.  This time it was his lungs.  He sounded asthmatic, but didn't look like it overall.  But we've got that ol' Albuterol (all-better-all) so I figured, why not?

Now, he doesn't always respond immediately, but he doesn't get worse.  This time he started to struggle, he also got upset, looked scared.  So even though I couldn't hear any "junk" in the lungs, I tried to suction him.  This involves inserting the suction tubing to the right depth, depressing a plunger to start the vacuuming, and pulling it back out with the nasties.

It really is pretty simple, and no biggie at all.  In fact, when he's sick, he might need it done as often as every 15 to 30 minutes.  It's kinda like blowing your nose.

Except yesterday, that's not what happened.  I went to suction him and the catheter only went partway in before it stopped.  I knew exactly what it was, although I tried to deny it for a second.  He had a plug.  And yeah, it's exactly what it sounds like.  A plug in your sink keeps the water in, blocks it up.  A plug in the trach doesn't let the air pass.  Not in, not out.  Pretty scary for him and for me.

I flew into gear, grabbed a trach tie, grabbed the spare trach, yelled to Andrew (who was in the room) to crank the oxygen all the way to the top.  I pulled the old one out, threw the new one in.  I'm afraid we didn't take the time to use all the nice lubricant on it and his stoma that makes insertion so easy most of the time.

And yeah, there it was.  A nasty, hard plug coating the inside of his trach, almost completely blocking it of.  Only about a pinhole opening in there.

I put in a call to our trach ninja, and apparently, the fact that the new meds are working, they're opening up his lungs, is a double-edged sword.  As they open up more, he'll start moving more of the junk that we've never seen.  And it's got to go somewhere.  So plugging is more likely than not.  So now that trach that sits bedside, and the ties that are in the drawer in a package have been moved.   They're hanging taped to his mobile, and the ties are already on the trach.

He's doing great this morning, really, really great.  We're prepared if he gets another plug.  But oh, I can't tell you how much I hope this is behind us.  In the almost four years since he got his trach, he's never had one.  And they're scary, dangerous.  And a very, very real threat to anyone with a trach.  I know several moms who've lost their children to a plugged trach.

So yeah, while he's doing amazing today, we're still on high alert for any more plugs.  And like I said, I'd be more than okay if this never, NEVER happened again.

Last week, as I was coming home from visiting a friend, the "supermoon" was rising over the mountain.  I wish the picture could do it justice.  Can I say, I love living here in the shadow of these mountains.  It rose just perfectly between two peaks, and the reflection in the wispy clouds is beautiful.  So enjoy the picture.  I wish I could say I used some amazing technique to get it, but I'm not that good.  Aren't we fortunate that God is an amazingly beautiful artist?

"The moon is at her full, and riding high,

Floods the calm fields with light.

The airs that hover in the summer sky

Are all asleep tonight."

-William C. Bryant