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

Sunday, October 28, 2018

My Crazy Life

So many thoughts, so much going on.  I seriously need some therapy.  So you've been warned.  (I think I've said that before, you know it's true!)

In the past month plus, we've done a LOT around here, mostly good, but even good stress is stress.

Matthew came home from his two year mission for The Church of Jesus Christ of Latter-day Saints on September 12th.

Joseph went through the temple for the first time on September 22nd, the same day we did Deborah's bridal pictures.

Matthew spoke and we had family and friends over for dinner on the 23rd.

The wedding was the 29th with all it's attendant parties, etc.

We moved the three boys from the basement to upstairs bedrooms and the newly weds moved in downstairs which has been turned into an apartment. 

In the meantime, if you remember, Aaron's heart rate and seizures kinda kicked up and he was on a two-week (okay, ended up being 6 days) heart monitor.  'Cause he'd been told to be good, and he was trying, but still, you gotta make sure you're not forgotten, right?

Then there are all the preparations for Joseph leaving for Louisiana for two years.  He spoke last Sunday, the 20th and again, friends and family joined us.

If you're counting, that's four weeks between Matthew speaking and Joseph speaking.  Deborah's birthday was in there.  It's soccer season, which means two games and two practices a week, plus refereeing, because it all costs money.  And Deborah had a birthday. And music lessons and school, and oh, yeah, that homework thing that the kids would really prefer we forget. 

By the way, I'm still subbing (mostly) full-time.

Tired yet?  I am.

Then Aaron got sick last week.  Pretty sure it was the norovirus.  For those who don't know, that's a fairly nasty intestinal bug.  Last time, he ended up in the hospital.  Fortunately, this time we were able to stay home, but still, so grateful for a washer and dryer!

Anyway, it all kinda caught up to me.  Wednesday I ended up in the ER with what turned out to be my ulcer acting up again, which is a much better answer than the initial concern of a heart attack.

So there you have it, folks.  My life in a nutshell.  The good news is, we're all still here, still kicking, still getting things done (mostly).  Aaron's monitor results came back pretty good, which means that we're thinking the low heart rates we're getting on his pulse/ox may be more seizure related than
heart related.  I don't know that that's a good thing necessarily, but since he's not having seizures that we have to "rescue" him from, that's better than additional heart issues.  You know, trying to think positively here.

And with soccer season coming to an end, I really am hoping for some more "down" time, or at least a break from the reffing drama.  'Cause you know, asking adults to actually act like adults is way too much when they're on the sidelines.  Nevermind.  I'm not going there today.  I'm going to clear my mind and focus on my blessings.

Whew!  I needed to get this out!  Don't know about you, it probably didn't help you, but I'm feeling better.  It's been a long crazy several weeks since the beginning of September, but you know, most all of it's good, and I've learned from all of it, the good and the rough. 

This life is to learn from, to give us experience.  Those are good things.  So even though both good and bad stress is stressful and sometimes hard on the body, so do good and bad (okay, difficult) experiences teach us, if we let them.  Think I'd better make sure I learn, right? 

My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.
Maya Angelou

Sunday, October 7, 2018

So Many Thoughts! And Taking a Break

Well, we made it!

Deborah and Bronson are married, and it couldn't have gone better!

The boys from downstairs are now moved upstairs and the newlyweds are in the basement apartment.  In some ways, that was more challenging than the wedding!  Probably because there wasn't a beautiful fun party at the end.  (giggle)

Aaron did his heart monitor, sorta, kinda.  Well, for a few days anyway.  He wore it for five days really well, and we babied it through a sixth day, sorta, and then it was all over.  I'm still waiting on the results, but we did get some good data with bradycardia and tachycardia both showing up.  (Yay??)

And now I'm sure we're getting ready for the next big adventure, but I'm hoping for a couple days of downtime first.

This weekend is General Conference for our church.  Every six months we gather to hear counsel from our leaders.  It's been a spiritual feast along with new announcements and some challenges.  There's movement to bring more gospel teaching into the home, more towards a family-centered and church-supported ministry.  I'm thrilled, and excited, and scared and nervous.  For quite some time Ive slacked off in formally teaching my kids, and it's past time to stop pawning that off on others.

One of the challenges, probably one of the hardest for me, is to have a ten-day social media fast.  Kinda interesting the way those thoughts have gone in my head.  "But how?"  "I can't."  "What if I miss something important?"  "What if someone needs me?"

Then, "what if I really need this?"  "What if I follow the counsel of the prophet?"  "What example am I setting for my kids?" "What blessings am I willing to give up in order to spend more time on Facebook?"

And these past five weeks have been beyond frantic.  I've been barely hanging on.  Thursday night, I broke down sobbing because I was so tired, and those who know me know that I just don't do that.  Ever.

So yep, I need a break and that's the plan.  As of tomorrow, I won't be on Facebook until the 18th.  If I'm truly needed, I'll be accessible by text, direct message, or just good old fashioned phone call.  I'll miss wishing my daughter "happy birthday" on Facebook, but since she now lives downstairs, I bet we can make it work.

Aaron is doing well, as far as we can tell.  I'll still post to Instagram and his Facebook page because my phone can do that automatically, but I won't be checking to see who has "liked" it or commented.  Because I think I need this rest, and I know I need to follow the counsel I've been given.  I'm even looking forward to this.

Almost everything will work again 
if you unplug it for a few minutes ... 
including you.
Anne Lamott

Saturday, September 15, 2018

Missions, Weddings, and Heart Monitors?

Only three kids to get out the door! 
Okay, so I know it's been way too long again, but life has been just a bit crazy around our house.

School started (8/20), life was starting to look "normal" again (whatever that means).  Aaron LOVES school, but the first wek he came home twice early because he wasn't doing well, and then I kept him home the last day of the week.  Two days out of five?  Well, that's not the greatest, but oh well.  We'll work with it.  Kinda have to.  The weekend went well and off he went again on Monday (8/27).  

I went back to work on the third day of school subbing.  Even that close to the beginning, teachers get sick.  Started getting into a routine.  This will do.

And then the wedding....  I have just under four weeks total to put together Deborah's wedding.  She's been dating her fiance for two years now, but they just realized they had the perfect "storm."  His brother who lives in Japan will be home.  Matthew will be home from his mission, Joseph won't have left yet, and if they do it by the end of September, it won't be cold yet.  Awesome!  I just kinda wish they'd realized this a month or two earlier.  

Or maybe it wouldn't have mattered.  It's all coming together, better than I thought it could.  And I only have four weeks to stress instead of eight.  It's all good, right? 

Wednesday, Matthew came home from the Canada Toronto Mission.  He's been gone two years.  He's goofy, funny, and quirky.  The first missionary down the escalator, we got laughter and applause from other families when he came running toward me and I got my hug.  As I was crying (of course) he told me that if I was that sad to see him, he'd go get back on the plane.  (Told you he was goofy.)  Hugs all around, a few tears. Two years is a very long time.


And then he knelt by Aaron.  Aaron.  The brother he wasn't supposed to ever know.  The one whose days are numbered, we just don't know that number.  And he started sobbing.  Sobbed hard.  He left us, knowing full well that Aaron might not be there when he came home.  He went out to teach people about Christ and His love and families, knowing that his brother might be gone when he came home.  But he was there, and it was overwhelming.  As I glanced around, there were strangers watching and crying along with us.

And that heart?  Well, we're not sure what's going on with that.  We've added a new word to the family vocabulary:  "brady", short for "bradycardia" or slow heart rate.  And it can be a noun, a verb, a gerund, you name it.  But it's an ugly word.  When your heart doesn't beat fast enough, it doesn't pump the blood well enough and the cells don't get the oxygen they need.  No bueno.

So here's the story.  We started noticing them back in March, but they were pretty rare, just a second or two, and never down to 55 beats per minute.  Since school has started, they've increased in frequency and duration.  They're happening both awake and asleep.  (Everyone's heart rate drops during sleep.)  Last week and into the beginning of this week we had several per day, along with seizures.  Sometimes his heart was as low as 45 beats per minute for up to 30 seconds.  That's way too long and way too low, folks.

It's notable that the seizures and the bradies started about the same time.  Are the seizures driving the brady?  Or is the too low heart rate driving the seizures?  Are they related, or are they separate and one just exacerbates the other?  And how do we address it?

For now, he's been put on a heart monitor.  It's (supposed) to be on for two weeks.  Here's hoping.  He's always on a pulse/ox, which is how we know he's been having lower heart rates, but this will register every singe beat.  It went on last night.  It will come off two days before Deborah's wedding.  'Cause you know, I told him that September was not his month.  He had to behave.  I guess he sorta wants to cooperate, but also needs to make sure I don't forget about him.  Thank heavens for a cardio and cardio nurse that are willing to work with me when we really don't have time to come in for an office visit.  

And in case you're wondering, I'm planning to sleep again in October.

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While I live a busy life, the pace ebbs and flows. Brad Feld
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 “Time crawls when you are bored; 
walks when you are occupied; 
runs when you are busy; 
but flies when you are having fun.”
 ― Matshona Dhliwayo

Thursday, August 16, 2018

Access: The Right of Everyone

I rarely vent on social media, but this is a social issue.  Not that I'm under any delusions about reaching the people who really need to see this, but still...  I'm frustrated, and angry, and tired, and probably a multitude of other emotions. 

Handicap parking and access.  Yeah, that stuff. 

Four times, FOUR TIMES! in the past 24 hours I've struggled because someone (okay, four someones) decided that they and theirs were more important than someone needing help.  Twice at a soccer tournament, twice at back-to-school night, the same school. 

I get that there are a lot of cars.  I get that it's hard to find a spot.  And those empty spots up front look mighty tempting.  But ya know, there's a reason they're so close to the entrance and it's not because I think I'm better than you.  It's because we really need them. 

And those ramps on and off the sidewalk?  Yep, they're pretty important, too.  My son in his wheelchair with all his equipment weighs between 125 and 150 pounds.  Tipping over his chair as we try to negotiate a curb would be disastrous. We need that access. 

Let me take you through what it takes to get Aaron out and about.  We do it a lot, it happens, but it's not that easy. 

Diaper change, food and meds if we're going to be gone long, oxygen tank.  Do I have enough for the outing?  How long will we be gone and do I have a back-up plan if it lasts longer?  What if he struggles and needs more?  Have to plan for that.  Do I have enough battery on his pulse/ox?  Has his suction machine been charged?  Do I have a new "nose" (filter) and suction catheter for when he gets junky?  And we haven't even moved him yet.

Time to go.  Lift him into his wheelchair.  Turn his oxygen on, unhook him from the vent, hook him up to the tank.  Turn off the vent, humidifier, oxygen concentrators (yes, two).  Unplug the pulse/ox and wind up the cord, place on the wheelchair.  Buckle him in, five buckles.  Now we're ready to leave the room, as long as the switch from vent to "nose" hasn't dislodged anything that will need to be suctioned first.  That happens a lot.

Out to the car, down the ramp, open the car, lower that ramp, up into the van.  Reattach the floor buckle that has to be undone to get him in and out.  Secure the wheelchair at four points, secure his seatbelt.  Make sure it's not twisted and he's all good.  This requires access through both side back doors and the rear door.  Add extra oxygen if we're going to be gone more than a couple hours.  There's always a back-up tank in the car, but it's for emergencies, and yes, we've needed it before.

The good news is that his "go bag," his emergency bag with extras in it, is always on his wheelchair, so I don't have to remember any of that, unless of course I use something and it needs to be replaced.

Finally, we're on our way.  BUT when we get where we're going, it's a reverse of putting him in.  And then once we're out, we have to move kinda slow.  We can't just "slide" through the crowd.  We can't take the stairs.  We don't fit in a lot of spaces.

Guys, this is hard!  But it's doable, and I don't mind.  But when someone who is able-bodied thinks that what they are doing doesn't matter, well, it does!  It saps the energy, energy that I really don't have to spare.  It takes away from what I do have to give.  Frankly, it makes me want to cry.  And when I mention that I can't get to my car because you're blocking the ramp off the sidewalk (and there was no way to go around, there was landscaping on both sides) telling me that you were just leaving anyway, like seriously, what was my problem??  Well, YOU are my problem.  And I have already waited, trying to figure out how to get to my car.  Waited in the heat with a little boy who was already struggling.  Waited while trying to see if maybe I could possibly ease down around the driver's side because not only were you taking a handicapped space, you were also parked over the hashmarks that are designed for a wheelchair van to use.  

So please, people, think of someone else.  Think of those who are not as able as you are.  Yeah, it's an inconvenience to park way out there.  But so is trying to get around when you're not mobile.  And honestly, sometimes I get to the point where I wonder if it's worth it to try to go out at all.

I know it is.  Aaron needs that.  He doesn't deserve to be homebound just because Mom gets tired of fighting battles.  What he deserves is to be able to enjoy the world, just like any other child.  

And by the way, it's $125 fine to park illegally in a handicap spot in Utah.  Maybe it's time to get our local police involved. 

“Accessibility allows us to tap into everyone’s potential.” 
― Debra Ruh