Tincture of Time

I apologize for the lack of and brevity of the updates.  I don't have a computer up here with me and the phone is hard to do much writing on. Plus there's just a lot of processing going on.

Aaron tolerated the heart cath well and came out happy, as usual.  But he and anesthesia just don't have the best relationship, and they didn't work well together this time either.  So yep, we're still here.  He even managed to finagle a trip to the PICU which is where we are now.

Every day we hope to go home but so far he hasn't read the script right.

The results from the cath weren't great either.  In fact, they're bad. We won't need to make any surgical decisions.  Those are off the table. And that's the easy part.

So we're waiting on Tincture of Time and holding on tight to what we have.  Life is a marathon. Even Spidey and Superman seem to know that.

Last night when I was struggling I was thinking about our other kids at seven years old.  They were so different.  So active, so healthy.  But they were also like Aaron in that they were happy, enthusiastic. We also started reading the Book of Mormon with them in preparation for their baptism at age eight.

Aaron won't be baptised.  He's already covered with the Atonement.  But he loves being read to, and while we don't know his capacity to learn, we know he does learn. So last night, I started with 1 Nephi 1 and read it to him.  And found comfort myself.

There are a lot of struggles.  That's the way life is, for everyone.  But I also have been blessed to see the goodness of God.  And at I will continue to make a record of my days, and of Aaron's.

You don't always need a plan.  Sometimes you just need to breathe, trust, let go, and see what happens.

Mandy Hale

And Now We Wait.

Aaron is in the cath lab now.  We weren't going to come up early, but after talking it over, the wiser course was to come last night.

We needed to stop his heart meds before the procedure and there's one in particular that he's really sensitive to.  Much better to be in the hospital already than to try to bring him in without it.

I know I've said before that he gets giddy when we come up.  Here's more proof. Silly boy.









Anyway, ideally, we will go home later tonight.  Realistically?  Well, we'll see...  Meanwhile, we wait.

 

Our willingness to wait reveals the value we place

on what we're waiting for.

 

Charles Stanley

Heart Cath, Flu Shots, Wave of Light, So Many Thoughts...

What's on my mind? 

So much, just soooo much.

It kinda seems to run in circles. 

There's the whole "flu shot debate."  Except in this house, it's not a debate.  It's a "get it or we'll see ya in May".  I know, I've heard it all.  Believe me, and I've listened.  But somewhere, somehow, you have to decide who to listen to.  I've chosen to listen to those who have spent time studying the human body and how it works, over many, many years, and what causes problems for it.  I've chosen to look at history.  (Flu pandemic of 1918 estimated to have infected 500 million, 1/3 of the population world wide, and killed 20-50 million.)  And I've chosen to watch how flu has affected the healthy members of our family, and how "just as cold" has affected Aaron.

Snug as a bug in a rug at marching band.

Last year, I got the shot, and I got the flu, too.  Yeah, I felt awful!  But I didn't get the fever and a lot of the body aches that went with it, probably because of the vaccine.  I'm a pretty health individual, but I still ended up with a pneumonia from it, probably because I wasn't able to slow down and rest like I needed to.  Between the two, it was literally 3 1/2 months before I was back to where I felt good:  the beginning of February through mid-May.  I can't imagine how it would have been if I hadn't had some protection.  And the only reason Aaron didn't get it was because I avoided him all I could, and when I couldn't, I looked like something out of a hazmat situation.  You know, gloves, mask, robe, etc.  And lots and lots and lots of hand washing and sanitizer.

Then there was Aaron a few years ago.  We ended up in a Lifeflight and sicker than I've ever seen him, EVER.  And he had a cold.   Yeah, rhinovirus. 

There's a lot of information about cold vs flu, but this year I found some articles (yeah, I'm a medical junkie) about the WHY they're different.  Basically, what it boils down to is the areas they are comfortable in and attack. 

God is an incredible artist.

Most colds need lower temperatures to survive and replicate.  No, not lower like cold weather.  Lower like more towards the outer part of your body, the nose, throat.  The upper airway.  That's why they're referred to as URIs, Upper Respiratory Infections.  It's not fun, in fact, it's downright miserable.  But the viruses don't do so well at the higher temps found in your core.  You know, where your lungs are.

The flu on the other hand, binds to lower receptors, the ones found down in your lungs.  And often, it finds those by the alveoli and causes trouble there.  The alveoli are where the oxygen exchange takes place.  Unhappy alveoli leads to lack of oxygen transfer.  See the problem? 

And this year is forecast to be an especially bad year.  Sigh...

Then there's the heart cath we have coming up this week.  On Thursday.  Not that I'd forgotten, in fact at any point in the last couple weeks I could tell you exactly how many days, but a stark reminder came when I heard from the cardiology nurse asking if I thought we should be admitted the night before, or just wanted to come in the day of.  That in and of itself is telling.  Only with the most critical patients, the most complex, do they offer to admit beforehand.  In fact, this was a first for us even. 

No, I think we'll wait until morning.  You know, one more good night's sleep in my own bed.  And besides, it's more of the during and after that has my anxiety ramped up.  This is the same cath that we were supposed to do in August.  It's the one where it's possible that his pressures might have been reduced, giving us the outside chance of maybe someday repairing his heart.  Given recent (and not so recent) history, I'm going to be happy if it hasn't gotten worse.  But I guess we'll find out. 

Then there's the whole part where he hasn't done as well following anesthesia for the past couple years.  And the "lovely" weather and all the smoke haze.  And, and, and... 

Yep, not sleeping so well right now. 

But I'm not going to give in.  I'm going to put on my big girl panties and be grateful for what we do have.  We have a child whose smile lights up the world!  And he is still here, with us, more than seven years after his birth.  We have other kids who are doing amazing things to help those around themselves, who are compassionate and hard working.  We have a home and some wonderful nurses who care for and love Aaron, almost as much as we do.  And we have a family that has been tied together with eternal bonds. 

Sunday marks Infant and Pregnancy Loss Day and the Wave of Light.  This is where people across the world light candles from 7-8 pm, wherever they are, to allow a wave of light across the globe to remember the little ones who've gone on before us.  You would be surprised if you knew how many have survived this.  It may be your sister, your mom or grandma, your neighbor, your coworker, your teacher.  Infant loss is still a taboo subject in our culture, but it doesn't have to be.  Reach out, love someone, show them you care.  You can even participate in a digital wave by taking a picture of your candle between 7 and 8 your time and posting it on Twitter or Facebook and using the hashtag #WaveOfLight. 

Like I said, there's a lot on my mind.  In fact, there's a lot more, too.  Children (older than infants) who have passed recently, people I come into contact with that don't think they can ever "be enough", etc, but I won't go into that now, maybe another time.  I think I've rambled enough here.  Just remember, you are important, you are special, and so is everyone around you. 

 “How cool is it that the same God that created mountains and oceans and galaxies looked at you and thought the world needed one of you too.”

-Author Unknown

Crazy Thing We Call Life

Working on sitting up, all by himself.

Oh, boy.  Once again, waaaaaaay too long since I've written.  And it's a good thing you can't see the clutter in my brain, 'cause it would scare you.  I write to unravel thoughts, process them, make sense (sorta?) of this crazy thing we call life.

So anyway, no news is good news?  Maybe? 

The powers that be (who is that anyway??) have put in place a new feeding system.  It was supposed to be implemented a couple years ago, but there was the whole "manufacture enough for the whole country/world" complication, and some other things that hadn't been quite thought through at the time.  Now, most of that has been figured out and the rest, well, us special needs moms are pretty much used to improvising and we share our hacks so it's working okay.

Port on the new feeding system

But along with the challenges of getting supplies, etc, comes a really great benefit.  Now our syringes and feeding bags screw into the adaptors instead of just sliding in.  For us, that means I don't have to hold it tight while pushing a med or a feeding, or even better, burping him.  This is HUGE in our house.  It means many fewer "feeding the bed" episodes, or squirting medicine on myself instead of into him. 

And just in case you really think I'm on top of everything and have it all together, let me share a funny with you.  Our old feeding system had two ports:  a larger one for the feedings or large syringes, and a smaller one for meds.  (Those also had a tendency to open at the least opportune moment.)  Because all the syringes now have the exact same tip, we don't really have a need for two ports.  That's the back story:

Shake it up, baby!

We got our new extension and started using it.  I thought it was fun how they had put "feed me" on the part that the syringe or feeding bag screws into.  It made me smile whenever I saw it, or even thought about it.  I mean, it's such a little thing, but why not?  About a week into the process, I looked a little closer.  It didn't say "feed me."  It said "feed, med" you know, in case anyone wondered what to place there.  I guess it makes sense.  Before we used different ports for food and meds.  So now, instead of being amused by a touch of whimsy, I'm shaking my head and laughing at myself for my lack of observation.

8 pm meds

But Aaron is doing pretty well.  Utah is mastering the whole bipolar weather thing which is always a challenge for him, so he's been getting breathing treatments fairly often.  All week we gave him albuterol every four hours, and we're tapering back to ever six hours this weekend.  So far, so good. 

Evenings are always crazy busy around here.  Because I'm working, I try to do all his prep work at night.  I was thinking about how this really shouldn't be taking so long to get everything done, and then I started looking at exactly what has to happen.

Prepping up his heart med

He gets a shake vest treatment every morning (with his nurse) and every evening with me. 

After that, we do two MDI inhalers and a nebulizer, along with a nasal spray.  He also gets a feeding and six medications or supplements in the evening. 

Ultimate Green Smoothie!

His nebulized medication doesn't have preservatives in it and it comes in glass vials.  Every night, I draw up the next day's doses.  That involves gloves, breaking of vials and filtered needles.  It doesn't take long, but it still...

Our silly boy getting his inhaled heart med.

Then there's his food.  He is doing so much better! on his blended diet.  Again, not a big problem, but it does take time.  The kids are great at helping.  All I have to do is ask them to grab me his things from the cupboard or the fridge in the garage and they know exactly what to get.  All in all, it's less time than the meals for the rest of the family, (think they might go for the all liquid diet thing?) but again, it takes time. 

And there's Aaron himself.  Not only do we need to do his trach and g-tube cares where we clean the sites and make sure they're doing well, but he seems to think it's fun to set off alarms, pulse/ox or ventilator, it doesn't really matter.  He's usually just fine, no issue at all, but we always have to check. 

So there's a whole lot that goes into our evening routines here.  Throw in a soccer game or practice, another activity, kids being run to and fro, and well, I'm afraid you can see how I misread "feed, meds" into "feed me."  But seriously, wouldn't "feed me" be a whole lot more fun? 

Our mountain. 90* one day, snow more than
halfway down the next.  Crazy!

 

 "If being crazy means living life as if it matters, then I don't mind being completely insane."

Kate Winslet