A Great Big Help, and a Sigh of Relief

We've been struggling for quite some time getting Aaron out and about.  He weighs almost 50 pounds, his stroller is about 35 pounds, plus all his equipment.  It's gotten to the point where he often just stayed home, even before the weather turned bad.

We had hoped to work something out with Make A Wish, but their regulations wouldn't let us do it.

But thanks to a very generous person, Aaron got some new (to us) wheels this week!!

He took his first trip in it today up to the hospital (where else?).

Talk about a blessing!!  I knew it would be easier, but I didn't realize how much easier.

On a good day, when everything aligned just right, it took me almost ten minutes to shift him and all his "stuff" from the car to his chair, and another ten minutes when getting back in the car.

Today it took me about three minutes to unload him, and that was taking the time to snap a few pictures.  It took a little longer to load him, but that's because I'm still trying to fine tune the straps that hold his chair down.

It's a rear-entry, which means we can park wherever, we don't have to have an empty space next to us to load and unload.  And he fits right up between the two 2nd row bucket seats.  There's even a fold-down two-seater jump seat in the third row position.  So we can seat six people, plus Aaron.

This will be a life-changing event for him.  The freedom he now has, the ability to get out and about.  And obviously a lot less wear and tear on his ol' mama's body.

And then the sigh of relief.  In my last post about processing, I mentioned that his most recent echo was not very comforting.  Today, in addition to his post-op visit with the plastic surgeon (went great), he also had labs drawn.  Among those labs was one that measured how hard his heart was having to work.

I've been anxious and nervous for the past two weeks about that one.  In fact, I even wondered if it would be bad enough that they might make me bring him in to be admitted.  Yeah, I know, I'm a worrywart. It's nothing new.

Shortly after we got home, the results were in the computer.  They were even better than the last time they were drawn.  66!!!  Anything below 100 is considered normal.  Normal like you or me.  Not "normal for a heart patient."  No, ours aren't necessarily that high, but it's well within a normal range.

So my guess is we won't be adding another medication and we'll hope for a better echo when he's seen again in six months.  So, so grateful.

Now if we could just get his sleep patterns back to normal....

Travel and change of place impart new vigor to the mind.  ~Seneca

Processing

It's now been a week since our marathon day of appointments.  I've been trying to process what all happened.

Actually, to be honest, a lot of the time I've just tried to forget what I was told and pretend that everything is the same as before.  It IS the same on the outside.  It's just I now know things I'd rather not have be a reality.

You know, processing.

I guess it's really not that bad.  Not bad enough that they want to do anything right away.

Anyway, so here's the report:

We saw dentistry first. He wanted to make sure the splint was still in place and that the bone graft was healing up.  It was.  Place a tick mark on the good side of the chart.

Next was labs.  We needed them before seeing hematology later that afternoon.  He's a really hard stick, so that can be dicey.  But it turned out that they didn't need to do a draw from a vein.  A finger poke would also work.  So not too hard.

He'd had a higher heart rate all morning, so I also took the time to change out his trach.  It wasn't completely blocked, but it was pretty goopy inside.  And once I changed it, his heart rate dropped to where it was supposed to be.

Then we hung out for a while in the Ronald McDonald Room waiting until our next appointment.

Side note here:  this is a wonderful room with a place for relaxing, computers, and a full-sized kitchen.  If you're ever wanting to help out in a small (big!) way, volunteer to cook a meal there for families.  It's a one-time commitment where you go in for a few hours and makes a huge difference for those who are living up there.

Then it was time for cardiology.  We did an echo and an EKG.  I'm not very good at reading the echo, but it looked a bit different.  Different isn't always a good thing.

It turns out that the right side of his heart isn't working quite as well as it used to, and he's got a couple of valves that are a little leaky.  Aaron has to have monthly labs, and next time we do them, we're adding in one to check for heart function.  Dr. M. said it wasn't bad enough that it was worth an extra poke right then, so he obviously wasn't too worried.  But you can bet your boots we'll be right on time getting them done this month.

He was fascinated by the echo screen, much more interested
in it than Mickey Mouse on the TV.

And we need to work harder on keeping his sats up.  Up to now, 90's was ideal, but above 85 was okay.  Now we need to do everything we can to keep him above 90%.

We may also have to add in another medication.  'Cause you know, 175 doses a week just isn't quite enough.

However, maybe I'm just looking for excuses, but the air quality was beyond awful last week, and there are all sorts of studies showing that bad air quality impacts both hearts and lungs.  So I'm going to go with that.  A girl can hope anyway.

He seriously thought the EKG was
a big tickle-fest.  He couldn't
stop laughing at us.

Then we rounded out his day with a visit with hematology.  Dr. ENT wanted us to see them because of the trouble he had with all the bleeding after his ear tube surgery in December.  Given that we've got a much more extensive surgery coming up in a couple weeks, that makes sense.

That one was a neat pick-me-up experience.  The long and short of it was that his platelets (clotting guys) have never looked better.  All the labs looked good, he has no bruising, hematology was glad to meet us but said they'd just say "hi" as we pass in the hallway.

BUT, the fun part was the hematology fellow who came in before the attending.  She remembered Aaron from way back when, when he was just a tiny little guy.  She was a resident on his team in October of 2010.  Yeah, last visit before his trach.  And while she doesn't remember all the details, my money is on her being the one who ultimately saved his life.

Aaron was in (again!) for hypoxia, low oxygen sats.  The resident, a woman, and probably her, was really puzzled.  She asked if I minded getting another swallow study even though he'd passed one about six weeks earlier because she couldn't see any other reason for these repeated admits to the hospital.

October 2010

Well, we did it, he didn't do it.  In fact, he failed almost immediately.  This resulted in his ng-tube (feeding tube through the nose into the stomach) being changed to an nj-tube (through the nose and into his intestines) and a fast track for surgery.

Because of those findings, Dr. M in cardiology and Dr. C in genetics started contacting surgeons, a distant relative who worked at the hospital got on board too, and we had a date for a g-tube and nissen two weeks later, timing that is almost unheard of.

Meanwhile, unknown to everyone, Aaron's airway was becoming more and more compromised.  In hindsight, if his surgery had been even a few days later, he would have passed away before surgery.

If it hadn't been for that resident's curiosity, we would have lost our little bug.  And to be able to tell her about her part in his life, well, that brightened my whole day.  And made the bitter news from earlier just a little bit more bearable.

And this week?  Well, Aaron continued to struggle with the poor air quality.  We had to really step up his breathing treatments.  But a windstorm has come through and blown out the gunk, so now he's needing a little less support.

There is something else in the works that will also make his life easier and better that will hopefully be finished next week.  So stay tuned.  More excitement up ahead, as always.

Oh, and if you haven't been following his Facebook posts, I've actually managed to get a picture and something up almost every single day this month.  You can go to this link and see what all is happening.   If you "like" his page, it should even show up in your newsfeed.

I have sometimes been wildly, despairingly, acutely miserable, 

but through it all I still know quite certainly that just to be alive is a grand thing. 

~Agatha Christie

Beauty from Ashes

Last night, William, the five younger boys and I had a chance to tour the new Provo City Center Temple.

As beautiful as all the temples are, this one holds a very special place in my heart.  I almost feel like it's been on my journey with me.

Back in the long ago, when we were in school and our girls were tiny, we used to attend semi-annual church services in the tabernacle.  William graduated from law school there.  His parents used to take the older kids to the Utah Valley Symphony there.

You know, normal, life-goes-on type of things.

Then it burned.  And not just a little bit.  The inside was completely destroyed.

It was December of 2010.  And in my own life, I felt the devastation of an overwhelming diagnosis, terrifying responsibility for a tiny little one.

Aaron had just been trached AND we had lifeflighted from our home back to the hospital four days after discharge.  It was all so new to me.  He was so fragile, his hold on life so incredibly tenuous.

I'm a very light sleeper.  The joke is that if a fly blinks, it wakes me up.  But at that time, I was afraid to sleep, afraid I would miss something, not recognize a problem, fail to be everything I needed to be.  The only time I ever slept well was when we were in the PICU.  In spite of all the noise and lights and chaos, I would finally succumb to sleep.

When I woke up to the ruin and rubble of the tabernacle, it felt very personal, and emotionally overwhelming.  When President Monson announced in October that it would be rebuilt as a temple, I cried.  It was a small, but significant light to my soul.

Last night, as we got to tour this beautiful work of art, my heart was full.  What was once a lovely, but very much temporal building has been elevated to the House of the Lord.

Where once we enjoyed beautiful music and inspiring sermons, now families are joined together for eternity.

I've grown, too, over the past five years.  I'm no longer afraid to sleep in my own bed.  I've learned about me, about Aaron, but also more about my Savior and Redeemer.  I trust Him more, I love Him more.  I feel His peace.

I know that hard times aren't gone.  They're very much still part of life.  But I also know where to find peace and beauty and love.

To appoint unto them that mourn in Zion, 

to give unto them beauty for ashes, 

the oil of joy for mourning, 

the garment of praise for the spirit of heaviness

Isaiah 61:3

Heart Month, Week One

February is CHD Awareness month, Congenital (meaning "present at birth) Heart Defect month.  Get it:  hearts, February?

Anyway, we're a week into it, and I'm (mostly) keeping up on posting a picture a day on Facebook about it.  Thought I'd give you all a recap.  And then if I drop the ball later, you can just come back and re-read, right?  (Trying to cover all my bases here).






  Day 1, Heart Hero: Our heart hero is Aaron. He fights the battles on the front lines, but his siblings are right there as his wingmen (or wingwomen?) With his broken heart he has taught us more about true love than anything else ever could.





Day 2, Diagnosis: We got Aaron's diagnosis of Trisomy 18 at 20 weeks. Initially, it looked like he has some severe cardiac complications, but a fetal ultrasound ruled those out. We were cautioned that prenatal ultrasound could only reveal so much and that 95% of T18 kiddos have heart issues. His little heart couldn't handle labor and so he came by c-section. We found out over the next few days that he has some holes between the chambers of his heart (ASD, VSD) and a duct that was supposed to close at birth never did (PDA). He also has crazy high pulmonary hypertension.

8 pm meds 

Day 3, Medication: Aaron takes between 21 and 25 doses of medication a day, plus continuous oxygen. Eight of those and his oxygen are directly related to his heart. We keep a spreadsheet because that's the only way to ensure that he gets everything he needs.

Day 4 Weight Gain: Aaron was so tiny when he was born, only 4 lb 15 oz. He dropped to 4 lb 2 oz and came home at 16 days weighing 4 lb 6 oz. He finally outgrew his preemie clothes (which were too big when he came home) about four months old. He got his g-tube and trach just before five months which meant he didn't have to work so hard to breathe and eating was more comfortable, and his weight took off! By age two, we were talking "diet" and calorie restricting. Today, he is bigger than any of our other kids were at his age and we're still trying to "grow into his weight." Many T18 kiddos have "failure to thrive." Not this one!

Getting x-rays at
Shriners

Day 5 Doctor Appointments: Aaron currently has his primary care pediatrician and eight other specialists that he sees. He no longer sees five others, assuming no new issues, and adds in one more next week. He needs his own social secretary sometimes. For instance, next week, he sees three in one day up at Primary's. But other times, we can go a month or two with no appointments. And yeah, "social secretary" is a good term 'cause he thinks they're all just good friends of his.

 Day 6 Coping: Wow, is that a loaded one. Sometimes it's just fine, others, well, not so much. I tend to hide when I'm not coping well. At least publicly. My family will tell you that I've got some major PTSD. When things go south, or when there are unknowns, I get irritable, uptight, research like crazy, can't hold still. But I turn to my friends online for knowledge, our specialists for guidance, my music for comfort, and my God for everything. My family, well, that goes without saying. They're always there. I am so blessed.


Day 7 Support: We've had so much support on this journey, family and friends who have let me know that I can call on them at the drop of a hat, doctors who've treated the symptoms that come with Trisomy 18, and all my "online family" those in the trenches with me. All over the world, I've got moms (and some dads) who've been there, done that and are ready to help with advice or just by lending a listening ear (eye?).

 I'm part of a trach group, a heart group, a couple local... special needs groups, and a few trisomy groups. Last summer, we were able to get together with SOFT for a medical conference. Such a blessing to not be alone. Being alone, feeling alone, that's one of the most devastating parts of a diagnosis, knowing that no matter how hard they try, most people around you really can't understand. And then you find there's a whole bunch of folks out there who are dealing with the same issues. Plus, with our kiddos, there's always someone awake, 24/7, to chime in.  Support is priceless. 

Compassion is the keen awareness of the interdependence of all things.

Thomas Merton

He Ain't Heavy, He's My Brother

 Coming home from a soccer game last night, Michael piped up from the back seat, "I think it would be great if a family in the neighborhood would have a T18 baby."

I was a little taken aback and asked, "Why?"

"Well, 'cause then Aaron would have someone to play with."

When I mentioned that learning a child has T18 isn't always looked at as a good thing, it was his turn to ask, "Why?"

We talked about how often they don't live very long, and it can be hard.

"But Aaron wasn't supposed to live long and he's still alive.  And I saw lots of kids older than him at the conference this last summer."

We talked about how at age 5, he still needs a lot of specialized care, about how he always will.  I can't just drop him off at the neighbor's if I need to go do something.

And he said, "but it's still good, it's still worth it to have him around."

Yeah, I think he gets it.  He doesn't see "T18."  He sees his brother, loves his brother.  He not only wants his brother to have friends like he does, he wants other families to have the joy that Aaron has brought to ours.

Sometimes we're told that a special needs child can "ruin" a sibling's life.

It doesn't have to.

(A short video I did a few years ago with many 

Trisomy siblings)

There’s no other love like the love for a brother. 

There’s no other love like the love from a brother. 

~Terri Guillemets