Change the Trach!!

Change the trach, change the trach, change the TRACH!!  When we went through the trach classes, we were told there was never a reason to NOT change a trach.  In fact, the RT teaching us that day said that if a psychic from Bermuda called and told him to change the trach in bed 24, he'd go do it.  It can only help, never hurt.

Um, yeah, except trach changes aren't much fun.  At least not for us, not me, not Aaron.  So like anything else I don't want to do, I tend to try to put it off, forget about it, try anything and everything else first.

Last week I said I was pretty comfortable where we were here at home.  He was sick but we were managing it.  And by Sunday, we weren't seeing much "sick" anymore.  But his oxygen, it's been really weird.  Like he does great on one to two liters when he's asleep.  Awake?  Well, that's another story.  Like a story with six to eight liters of oxygen in it.  I adjusted some more vent settings, (this time without permission, shhh, but watching his parameters to make sure he was still within safe limits).  It might have made a small difference, but really, not much.

Then this morning (or late last night? I can't remember) I realized that his cuff wasn't holding any air.  Like, none at all.  I would fill it up, pull the syringe off, and it would deflate.  All. The. Way.  Yeah, I don't think it was helping much.  So when he was awake this morning, I bit the bullet.  It was right after Daddy had been holding him, so he was still satting pretty good.

Sleeping peacefully (yes, with his eyes open).
See the cute shirt my sweet niece found for him.
and in the back you can see the ambulance a
paramedic gave him for a birthday present.
I guess he figured Aaron had seen the inside
 of one enough that he should have his
 own to play with!

Changed the trach, he cried, then he laughed, silly boy.  Right from one extreme to the other.  Then he fell asleep pretty quickly again.  And there was condensation INSIDE his trach balloon.  Whatever!  I've never seen that before (in all my vast experience of two and half years of trach experience with one patient).  So I pitched that trach.  It's out of here.  And today he's been doing better.  Of course, I had already put a call into pulmonology.  (I did say I try anything and everything else before changing a trach.)  By the time I heard back, he was doing a bit better, not great, but better.  They got the Trach Ninja involved (she wasn't actually in today, but they got a hold of her anyway).  She called and we went over a few things.  I now have permission to put the settings where I already have.  She's going to check on some tests from last week and call me tomorrow after she sees them.

But tonight, when he was desatting again and I was busy, I called into Andrew and Michael to turn him up another liter.  I couldn't remember exactly where he was, but they reported a good wave pattern and sats in the high 80's.  Quickest fix for that is to turn him up.  When I went to check on where he was, they had turned him up to three.  Yeah, up to three liters.  And funny, this mama seems to be processing her own oxygen a bit better, too.

Good judgment is the result of experience, 

experience is the result of bad judgment.


--Mark Twain  

Sweet Sounds

Another quiet, early Sunday morning.  I sit here and listen to Aaron "talking" in his sleep.  I've missed these sounds.  He's been sick this past week.  You know how your throat feels a bit tight and scratchy when you've got a cold.  Well, it is tight, swollen, and his gets that way, too.

I haven't heard any noises from him since last week, just before we switched over to his new ventilator. And changes, well, they always change things.  In the back of my mind was the niggling little concern that his voice might be gone.  I know of another little girl that had this happen.  She just couldn't tolerate the Trilogy, and even when they switched back to the LTV, she didn't vocalize again.

Docs and RTs don't like to make changes when a patient is sick.  It's too hard to tell what is going on.  But we didn't know he was getting sick.  So this week has been full of challenges.  Was it the vent?  Were his settings enough?  (Yeah, that worry's not a new one!)  How sick is he?  Does he need to go in?

I felt pretty comfortable with him here at home.  He has been really high on his oxygen, but I haven't felt that anxiety or even concern that he needed to be seen.  I've felt peace.  A good sign that he was in an okay place.  I've fiddled with his vent settings (with approval from PCMC) to give him more support.  We've watched him like a hawk.  His breathing treatments are frequent, like scheduled every four hours instead of just as needed and at least six hours apart.

But yesterday, I started to see some changes.  Last night, I heard his voice for the first time in a week.  During the night, even awake, the his highest oxygen need was four liters.  Mid-week, that was a sleeping level, and awake was seven.  He's snoozing soundly and sitting about one and a half right now.  Little monkey, when I tried to get video of his noises, he didn't want to do much.  So here's a peek at them, but not much.

So even though we're not in the hospital, he's on a 24-hour watch period.  He has to stay three liters or less for 24 hours before he can go out.  I think we've started the clock.

On another note, I found myself re-reading a book yesterday titled "When Your Friend's Baby Dies".  It's hard, not nearly as hard on you as on your friend, but still hard.  Tomorrow, I will attend another funeral for another child.  Sweet Paxton blessed the lives of so many people.  I am so fortunate to know his mom.  She is an amazing inspiration and I am grateful for her in my life.

I was counting the other day and realized that in my life, I think I've attended six for people at the end of a normal life span.  I've also attended three for teenagers and four for children who have not even reached school age.  Yeah, more for people who are still living with their moms and dads, who've left huge child-sized holes in the lives of those who love them.  See, not only do they miss their child immensely, they're very much used to the day-to-day care of the child, especially in the case of a special needs child.  The hours and hours they physically spend caring for their loved one.  There is nothing and no way to fill that gash in their lives.  But being there, showing that you care, I don't know that it eases the pain, but it shares it.

Please, if you know someone (and chances are that you do!) who has lost a child, yesterday, last year, ten years ago, reach out.  As my friend said at the funeral of her precious daughter "And I will miss you for the rest of my life."  The pain doesn't ever go away, not completely.  I believe it changes, I hope time softens it a little so it doesn't hurt to draw in every breath, but it's never truly gone until parent and child are reunited.

As I listen to the sweet sounds of Aaron from the other room, I cherish them.  I cherish the sounds of my other children, even when they may be a little not so sweet.  They are my flesh, my heart, my life.

For this child I have prayed, 

and the Lord has granted me the desires of my heart. 

– 1 Samuel 1:27

Life, What a Journey

This week has been an incredibly busy "lots to do, lots to learn, lots to feel" kind of a week.

On Monday, Aaron went into the hospital to try to switch to a new ventilator.  It's an amazing machine.  It's supposed to be easier to breathe on, it's much less complicated, half the weight, and on and on.   See why I'm excited about it?

On Tuesday morning, the Trach Ninja (yeah, she really is that amazing) at Primary's came in and asked me what I thought.  Honestly, did she really want to know?  Yep, she did.  "I think he's getting sick."  Yeah, not what she was expecting, or wanting, to hear.  The machine, yeah, it's pretty cool.  Aaron, he's sick.

But he's not "in the hospital" sick, at least not yet, and we don't think that he'll end up there.  He's got a cold and we're seeing the pulmonary hypertension kicking in.  But we're managing it at home and this time I'm feeling good and comfortable about being able to do that.  Such a relief from the usual anxiety and worry.  He IS sick, but we've got more tools in the toolbox, more knowledge under the belt, and I think we can weather this one at home.   But yeah, home is exactly where the little monkey is going to be staying.  No outings for fun things until he's done.

Tuesday night I oriented a new nursing company.  We changed for a variety of reasons and it looks like this is going to work out very well for Aaron.  In addition to helping him at night, they'll also be providing his day nurse for school.  I do miss our old nurses, but it was a change that was necessary on so many fronts.


Wednesday was Aaron's IEP for school.  I'm still a bit overwhelmed by the idea of him going to school, but also so excited for what they can do to help him.  Homeschooling my "normal" kiddo this last year was a bit of a challenge, a new experience.  But I know how to do Pre-Algebra, I've studied history and science.  And English, yeah, well, that was my major and my passion.  So it was more about routines and how to teach him best.  With Aaron, I don't have the knowledge or skills or equipment, and I'm not sure how to get there.  But there are wonderful professionals who've spent a lot of time and effort to gain that.  It's very much the best thing for him.

Wednesday night was also the night we went to see Peter Pan.  I love watching people enjoy performing.  This was no exception.  Especially Peter and Captain Hook.  They totally stole the show.  And when I can watch my own kids having fun up on stage, well, that just takes the cake.  What can I say, I love my pirate and Indians.

On Thursday, I learned that one of his little friends had gone home.  My heart is broken for Paxton's family.  I first heard rumors of a little boy like Aaron shortly after he was trached.  He lived somewhere close to us, and while he didn't have Trisomy 18, he had "something else" that was a lot like it.  I think the boys were about one when we first met up.  (With winter and all, neither one of us ventured out unless it was critical.)


Little Paxton lived about two miles away, had a monosomy (missing a chromosome), and had a trach.  He was also born exactly one month after Aaron was.  I liked to joke that they were friends before they came and were goofing off and messing with those chromosomes.  I had hoped they'd ride the bus to school together, that they'd grow up together.  They were so similar.  But on his birthday, Paxton became sick.   Just five days later, he lost his battle.  His family will be together again.  I know it and they know it.  But there is going to be a long, heart-breaking time between now and when that happens.  There is such a huge hole in their hearts.  And I ache for them.  Like Aaron, like all our children, Paxton is loved immensely, and nothing and no one can take his place.

“Perhaps they are not the stars, but rather openings in heaven

 where the love of our lost ones shines through 

to let us know they are with us.” 

– Author Unknown

Happy Birthday, Michael

Happy birthday, Michael.  You're seven years old now.  Your birthday was yesterday, but you've been counting down for over a month, and the day finally arrived.  I think you had a good one.  We got to go see Despicable Me, 2 with Hopekids in the morning.  Then we came home and got ready for your party.  You had a backyard full of your friends shooting water guns and lobbing water balls at each other.  Pizza, punch, cake and ice cream rounded out the afternoon.  Last night, you fell asleep listening to Dad read a story, something you've done a lot over the past few years.  Somehow, you just can't seem to keep your eyes open until the end.  There can't be too many better ways for a little boy to drift off than by listening to his dad's voice reading to him.

Michael, your childhood has been so different from your siblings.  You're kind of in a strange place.  You're not the youngest, but yet, you are still like the youngest.  There's another one who needs sooooo much more of our physical attention, but you need it, too.  You can't be left on your own, not really, but especially early on, you were often left to entertain yourself.  You are the last one of ours that will play baseball and soccer, that will go to the bus stop on your own and the last one we'll have in the regular public school system.

You were there on that day when we found out that your brother was going to be different.  We had no idea that it was going to be any different than the rest of you, and when I started crying (and couldn't stop), you wanted them to stop hurting Mommy.  You were only 3 1/2, and so concerned for me.

Over the next few months, there were often times when I would tear up, although I saved most of the sobbing for when I was alone.  It was you and me in the house and you would often, any time the urge hit, come running to find me and give me a hug "because you're sad, Mommy."  I'm sorry that I was so sad around you, but so grateful for your compassionate spirit.

And you've got an immense amount of faith.  Your Sunday teachers thought it was so cute that every time you were asked to pray in class, you always asked that your baby would come home healthy from the hospital.  They had no idea that it was a real act of faith, of trust in God.  They didn't know the odds of that happening.  A year or so ago, there was a baby blessed at church and you asked when we were going to do that for Aaron.  I reminded you that we had done that in the hospital, the day he was born.  You asked me why and I told you that we weren't sure he would ever come home from the hospital, or be strong enough to go to church.  You replied, "I knew he would."  And yes, I think you did.

Your baby doll had to have oxygen,
just like Aaron.

You're a funny boy, Michael.  You love to run and jump and get into mischief.  You've had more opportunities to do so with so much of my attention being focused on Aaron, but you're also so quick to come play with him or read him stories.  I don't think you really see him as being "different."  He's just your little brother to you.  In fact, when he was tiny, you were sure that you had tubes and wires, too, as an infant, because that's just what babies had.

You're so smart, sometimes a little too smart.  You learned to write your name early.  And you practiced, everywhere, often with blue sharpie.  One time, you wrote your name on the inside of your bedroom door with it.  Then on the outside, you wrote it backwards perfectly, letters and name, as if you could see right through to the writing on the other side.  I wasn't quite sure whether to be impressed or irritated.  I decided on a bit of both.

When I told you that you couldn't go on Mary's or David's missions with them because you were going to be baptized at eight and you wouldn't be here, it took about two seconds for you to come up with (in an exasperated tone, like, "duh, Mom) "They baptize people on missions."

But you also knew before age five about how to read a pulse/ox machine, how to tell whether it was reliable or not, and if the numbers were something to be concerned about.  You could turn oxygen up and down as needed.  You're probably the only kindergartner around that put a "stander" as something a magnet could stick to.  I doubt anyone else even knew what that was!

I love you, Michael.  Seven years old going on 17, trying so hard to be like your big kids.  You're an amazing little boy.

Sometimes being a brother is even better than being a superhero. 

– Marc Brown 

Cooking the Frog

There's a story, saying, whatever about how you cook a frog.  If you throw him in hot water, he'll jump right back out.  But if you put him in cold water and gradually turn up the heat, he'll be cooked before he realizes there's a problem.  I'm afraid we might have been cooking the frog.

See, Aaron has been very, very slowly becoming less stable.  It's been gradual, the kind of thing where I scratch my head and go, "what are you doing today?"  But as I look back four to six weeks, overall, it's become a concern.  His heart rate has increased, his respiratory rate (how fast he breathes) has increased.  His oxygen needs have increased.  He's less tolerating of time off the vent or of lying down all the way.  A very minor change in his ventilator sent him into a tailspin.  All in all, not good signs.

So this Wednesday's appointment brought it all into sharp focus.  He is simply not where he's been for the past two years.  We're making changes.  I've started a couple of things that are outside the usual medical scope (but with the blessing of his doctors).  We've started using coconut oil once a day for his digestive and neurological systems.  We also started using an essential oil called Crystal Breath to help with his respiratory system, you know, the system that's struggling right now.  A lot of other parents have had good results with similar treatments, and I'm hoping we will too.

We'll also be changing to a new ventilator on Monday.  I'm hoping that it will be easier for him.  The Trilogy has some newer technology and also involves fewer connections.  Aaron and I will check into the hospital on Monday so they can work out the settings and be home by Tuesday afternoon with the new vent.  In addition to working better for him, the new vent is about half the weight of the old one, good news for my shoulder.

The trick here will be to figure out how to hook it to his wheelchair.  It's a different shape and well, we'll just have to figure it out. There's a really cool double vent tray out there called the addytray, but with everything else, it's beyond the budget.  So we're exploring our options.  We'll make it work, we always do.

After a long day with the doctors, all worn out.

So we're going to work on turning down the heat on the frog.  We've decreased his calories to make it easier on his heart, we've added the coconut oil and essential oil.  Next week we'll switch ventilators.  We saw six doctors and three additional specialists this week.  It was a long one.  But while we won't ever be swimming in cold water, we're hoping that the pot doesn't get too warm.  And who wants a cold bath anyway?  In this case, I might!

Hope is faith holding out its hand in the dark.  ~George Iles

Rambling Thoughts

The house is starting to stir around here.  It's a summer Sunday morning and I've been up for an hour and a half because my nurse's shift was over, but most of the rest of the house kept sleeping.  Lots of time for thinking.

I've been sitting here listening to Aaron breathe.  Breath, such a simple, vital action.  So peaceful to listen to when it's going well.  So terrifying when it's not.  This morning was a good one.  He was off the ventilator for almost an hour, the first time in a few months we've tried it.  And he did so well!  In fact, so well that I tried to put his speaking valve on him.  Um, well, maybe a bit too much.  Silly monkey decided he couldn't remember how to breathe out on it, how to push the air past his trach to his mouth and nose.  The funny part is that he was vocalizing just before, and quite a bit afterwards.  In other words, he was doing just what he needed to do with the speaking valve.  That's okay, he'll figure it out again sometime.  No rush.


There are a lot of changes and things coming for Aaron.  This week we start our rounds of biannual visits for most of his specialists.  He sees the orthopedic doctor at Shriners on Monday for follow-up on his scoliosis and his foot surgery.  Tuesday, he sees his endocrinologist for follow-up on his thyroid.  Wednesday is the all-you-can-eat, blue plate special where we see the ENT, pulmonology, special needs and probably dietary as well.  At least it's all in one day, in the same room.  But it makes for a long day.

Then the next week, we start with a new nursing company.  That's got me a little bit nervous.  New things are always a bit scary, but I think it's going to be a good move.  Plus, I have his IEP scheduled for school mid-July.  Yeah, my little man starts school this fall.  It's crazy!  I only sent two of his olders to preschool.  They were four and that was three days a week and it was because they needed to get a jump on reading.  Both boys are red/green colorblind and needed to be able to read those crayons and markers to know what they were using.  Aaron is three, developmentally about six months, and will probably be attending five days a week.

Deep breaths here, but I think we've got it.  I went down to his school last winter and took a tour.  It is going to be amazing.  There is just no way that I could come close to duplicating what they can do with their equipment and training here at home.  And I owe it to my little man to help him grow and develop to his fullest potential, just like his siblings.  But it may be a little harder to let him go.

So that's what's happening in Aaron's life right now.  I'm still a bit worried about his heart, but that's nothing new.  I think I always will be.  He's doing better overall with his reduced calories.  I think it may just take time to get everything back in balance.  As I'm typing, he's in there blowing bubbles and cooing to himself.  Yeah, without that speaking valve.  Doing just exactly what he needs to do to breathe with it.   That's okay, as I said, he'll get it figured out.  He's been doing the "impossible" for his whole life.  I don't see a reason for that to change.

The difference between the impossible and the possible 

lies in a person’s determination.

–Tommy Lasorda 

Let Freedom Ring

I don't know if there will ever come a day when I don't tear up at the sight of the flag, at the sound of our national anthem.  I think I will forever know the words to all the military fight songs.  Although it wasn't until about five years ago that I realized the Air Force Fight Song doesn't say, "off with one heck of a roar."  I guess the teachers at my grade school on the Air Force Academy didn't think too much of teaching a bunch of 2nd graders to sing "hell of a roar."

This has been a wonderful holiday for us.   My mother-in-law has a saying, "Celebrations -- early, often or late, they're great!"  And so that's what we did.  We started by taking the kids out to their home for fireworks on the 3rd.  It was Aaron's first experience with fireworks.  I wish I was good enough with the camera settings to be able to capture the look on his face.  He loved them!

On Thursday, we played games here at home.  Dad is definitely the monopolist around here, handily winning each game of Monopoly.  The amazing part is, it was Michael who was giving him a run for his money (literally).  Then we went out to Thanksgiving Point for fireworks.  It was Aaron's first time.

Last year, we watched our own firework show as the mountain near us exploded.  I wasn't leaving the house unless we were evacuated.  The year before, he was doing well but had surgeries coming up, and the winter had been really rough.  His first year, well, he'd been home from the NICU for all of five days, and although we didn't know it, was heading back into the hospital in heart failure in less than a week.  Nope, fireworks weren't high on our list of priorities.

This year though, this year was amazing.  The only thing that would have made it better would have been if Mary and David had been there, too.  But I wouldn't have them doing anything else or anywhere else than where they are, serving others and sharing the love of God with them.

We went early and had a picnic dinner and played games on the lawn.  Again, I wish I was good enough with the camera to capture the looks on faces as we watched, or the fireworks themselves.  There was a neat family sitting near us that brought over a glow stick for Aaron.  Another first.  He loved it!  In fact, as William would shift the way he was holding it, Aaron would change his position and direction of swing as he hit it.  Yep, he's a smarty pants.

The fireworks were accompanied by music, and the first song was "Oh, Say Can You See?"  I love my kids.  They stood without hesitation, proudly saluting the flag that was between us and the rockets.  As I watched and listened, I was reminded of how many, many of our ancestors watched through similar sights, hoping and praying that the flag would still fly, that their loved ones would be safe, but willing to take the chance for freedom.  These freedoms we enjoy, the freedom to live, to work, to worship, to try again and again.  They are priceless, but bought at a very dear price, the blood and sweat and tears of not only our military members, but also their families.

Today, I took the younger five boys to a colonial village.  There they participated in chores and school. And I'm afraid that school was even less exciting to them than usual.  Michael enjoyed it.  The others, well, they thought it was a bit boring.  But none had to wear the dunce cap, so I guess it all worked out.  They hauled water, and I'm guessing that if we had to do that here, I'd even have a bigger fight trying to get them to clean up.




There were some good old-fashioned "time out" spots, but I think they enjoyed it a little more than they would have back then.  Something about being able to get themselves in and out, and no rotten vegetables.  They also spent a little bit of time playing a colonial version of skidoo.  But the uniforms?  The swords and muskets?  Those were a big hit.  All in all, a fun, educational trip.

O thus be it ever, when freemen shall stand
Between their loved home and the war's desolation.
Blest with vict'ry and peace, may the Heav'n rescued land
Praise the Power that hath made and preserved us a nation!
Then conquer we must, when our cause it is just,
And this be our motto: "In God is our trust."
And the star-spangled banner in triumph shall wave
O'er the land of the free and the home of the brave!