Saturday, November 24, 2018

Fine as Frog's Hair

He made it home, he made it to school, he made it back to baseline (mostly).

The last couple weeks we've been trying to get our feet under us.  We came home in time for Joseph and Aaron to say good-bye, but just barely.  Joseph has been in the Missionary Training Center (MTC) for just over two weeks and flies to Louisiana on Tuesday.

The adventure never stops, right?

We never truly did figure out what put Aaron in the hospital.  Possibly (probably?) his digestive system.  You know how when you get sick, it can take a while after before you truly feel back to normal?  Well, for some people with medical issues, it's even a bit harder.

 It actually took talking to a friend to really help me figure things out.  In retrospect, it all makes sense.  He was probably dealing with some post-viral gastroparesis.

In other words, that tummy bug he had before was leaving its mark on him.  I'll spare you the details of getting him "moving" again, but the long and short of it is that when your gut is backed up, you just don't feel well, don't breathe well.

We've made some changes (again) in his diet.  In an effort to reduce the amount of food but keep up with his calorie intake, I've switched from a 100% home blended diet to an organic formula for most of the time.  We still blend some, but not as much.  And so far, he's doing well on it.

He's back at school, having a great time.  We've been able to taper back on his asthma rescue med.  For a little while there he was getting it every three hours.  Yeah, it was a lot.  The last few days it's only been once or twice a day.

I know that doesn't sound real great.  I mean, if asthma is under control, you shouldn't even really have to use a rescue med much at all.  But for us, well, it is what it is.  Breathing is just not optional, regardless of what he thinks.

Two days ago was Thanksgiving.  And he was here, as were all my kids except Joseph.  I really am missing him and all his help, but wouldn't have him anywhere else.

And Aaron and Thanksgiving?  Well, that turkey nearly did in the turkey!  I was trying to turn his wheelchair and get him up near the table when he reached out and grabbed the platter near the edge!  My good china platter full of turkey!!  And when that kid latches on to something, good luck getting it out of his hand (just ask my hair).  I was picturing china shards and turkey all over the floor, while he laughed at us.  Fortunately, disaster was averted, and he moved on to yanking on my shirt and trying to grab my hand.  But try some turkey?  Whipped cream?  No way.  Not going past his lips.  Silly boy.

Yesterday was full of getting Christmas set up. His angel tree is in his room, up where he can see it.

Holidays are kinda weird for medical mamas.  You're so grateful for each one, but mindful that even the close ones aren't really guaranteed.

You're thrilled to experience it with your child, and ache for your friends who are decorating graves instead of filling stockings.  You love the look on your child's face as he sees the magic lights, and realize that you'll be missing so many other gatherings, but still wouldn't trade it for the world.  You give up on building some memories, knowing that some day, Tiny Tim's crutch will sit alone in front of the fireplace.  And you fight, fight with heart and soul to keep that day from coming.

Someone asked me not long ago when the time comes that I stop wondering if this (fill in the blank) will be the last.  I replied, "when the one comes that he's not here" and tried not to cry.

It's hard, so hard parenting a child that you will outlive.  It's hard parenting other children who know their brother will be the first one on the other side.

But today, today he is here.  He is laughing and playing.  So we'll turn on the Christmas music and lights.  We'll play, sing songs, tell stories.  And we'll be grateful.  Grateful for each and every day, good and bad.

And right now, they're good.  Very good.  Fine as frog's hair.

Don't be fooled by the calendar. 
There are only as many days in the year as you make use of. 
~Charles Richards


Wednesday, November 7, 2018

Discharge, Take Two

Trying again. He had a pretty good day yesterday, and a really good night. The only thing that changed is that his abdominal x-ray showed a somewhat large amount of "stool burden", you know, poop, so he got a suppository to help him out. Did that do the trick? Did he just need a little more time? Are we truly out of the woods? Who knows.

But once again, we're all packed up and ready to go, just waiting for papers. And hoping he's on the same page this time.

UPDATE:  We made it!!  We're home, he's resting, it's all good.  And hopefully, we won't be back for a LOOOONG time.

The thrill of coming home has never changed.
Guy Pearce

Tuesday, November 6, 2018

False Start, and Still No Answers

We were all set, like ALL SET, to leave yesterday.  At rounds they asked if I was comfortable going to the floor, or..., and I said, “home!”  I mean, he was looking great, totally where he should always be.  And had been pretty much since we got here.

Discharge papers were printed, meds were gone over.  William and the boys were on their way up to have dinner with me and take us home.  It was all great!  Was.

They were caught in traffic and I went upstairs to grab some food quickly.  Came back and things were not so great, in fact, not great at all.  He’d gone from five liters and comfortable to 12 liters and multiple episodes of bagging, and it continued.

We waited to see if he’d pull out.  Nope.  Two hours after it started it was still bag and 12 liters, then bag and 12 liters.  He was a mess.  The doctor was requested.  No one had any idea.  No one still has any idea.  More x-rays ordered, this time of his abdomen.  Nothing remarkable there.  No fevers, no discharge, normal “output” in his diapers.  Nothing.

So here we are.  I went home to grab a few things and bring the car back.  And we’re trying again.  We got him down to five liters by morning, but not until the night was almost over.  He’s not as happy as he usually is.  And we’re scratching our heads.

This is not what I had planned.  Joseph leaves tomorrow, and we’re not quite ready.  Plus there’s just those last few days of spending time with him.  And the thoughts that run through your mind.

What’s going on?  Where’s this going?  Why can’t we get him down where he should be?  Why isn’t he happy?

Honestly, these thoughts aren’t new.  Every time, EVERY TIME I leave him in the hospital I worry.  I wonder if this is the time I get a phone call I don’t want.  (That’s happened before.).   The one saying things are not good, not good in a very big way.

When I’m driving home from regular appointments I find myself really tired.  But driving to and from the hospital when he’s inpatient?  Nope, senses are pretty much on high alert, the adrenaline is definitely present, even if it’s not rushing through.  This is hard.

It’s hard for me, for Aaron, for William and the boys at home.  It’s hard on the kids that have moved out.  It’s just hard.  Sitting around gives your mind time to go places you wish it wouldn’t, you wish you didn’t even know how to think about.

November is hard anyway.  It’s darker, colder.  Eight years ago today we tried to extubate him after g-tube surgery and he failed, SPECTACULARLY, which set us up for our trach journey, which I still need to write about.

Right now, we’re aiming for tomorrow morning, or at least I am.  I was kicking myself on the way home last night for not getting a picture of Joseph with Aaron, so we “need” to be home tomorrow morning to take one before he leaves.  Please pray for our little bug that we can figure things out and get home.  Home where he belongs, where there are no IVs, no middle of the night treatments, and lots of love.  We need to be at home.

Everything is restless until it comes home. ~John Bate

Monday, November 5, 2018

Stumped, and a Superfast Turn Around

Soooo, back in September I told Aaron he had to be good for September because it just wasn’t his month, and October was kinda full, too.  Guess he took me at my word, ‘cause it’s November and he decided to take his turn.

Last Monday he came home sick from school and we got x-rays and labs, which came back mostly okay.  His ped figured it was a tracheitis, or infection in his trachea, so we started antibiotics and he stayed home a couple days.  I had to laugh at the argument I had with myself on Halloween.

“He HAS to go to school, it’s Halloween!”  “Um, no, he still does’t feel great, and he doesn’t care.”  “But I care!”  “He doesn’t.”  Yeah, this was all in my own head.  In the end, he stayed home one more day and went to school on Nov 1 in his costume.  Hey, it worked!

Friday he was a tiny bit off, and Saturday as well, but nothing too bad.

Sunday was another story.  He was struggling from the get go.  Ten liters of oxygen, working a bit harder, breathing a little faster.  I bagged him for a few minutes before we left for church and gave albuterol hoping to pop those lungs open and give him what he needed. No go.

I ended up having to bag him off and on (mostly on) through church.  Why were we there?  Well, we were already there and had the car that everyone came in. I could handle things as well there as at home, and well, we were.

Plus, if you remember, Joseph leaves for the Missionary Training Center on Wednesday, so Sunday was our very last chance to get everyone together for a family picture.  The next opportunity will be fall of 2020.  When you’ve got a kid whose life expectancy at birth was less than two weeks, you do what you have to, and you don’t take for granted that you have two more years.  Always hoping, but not assuming, you know.

So we did the pictures, although I haven’t seen them yet, came back inside and called 911.  Yeah, no way I was going to be able to make it up here on my own.

Even in the ambulance, we struggled with his sats.  Normally if you bag Aaron, he pops up to the mid-90s really easy and just hangs out there.  But we were bagging on 10 liters and couldn’t get above 82%.  Not really what any of us liked so much.

That is until about five miles out.  All of a sudden he decided that maybe this was okay.  He popped up to the mid to high 90s!  And pretty much stayed there.  Even in the Emergency Department he was looking good, like pretty close to home baseline good.  We pulled labs (again) and got x-rays (again) and nothing really stood out, except a higher CO2 (the gas you’re supposed to breathe off).

Everyone here is pretty much stumped.  Higher CO2 isn’t great, in fact, it’s not good at all, but we don’t know why it happened.  However, it’s back down again this morning.  We have no answers at all, just a few vague suspicions.

But given that everything is looking good, the hope (plan) is to start up his feedings again and as long as those don’t go sideways, we’ll come home tonight.  So all in all, about 24 hours.  Not too bad, especially considering yesterday.  But I wish we had some answers...

The important thing is not to stop questioning.” – Albert Einstein