Friday, January 11, 2019

Our Medical Front News


We're back in school, back to work, back to the doctors...

Well, yeah, but they're routine (I guess) visits.  Follow-ups, you know.

Aaron saw cardiology just before the New Year and trach/vent clinic on Wednesday.  That one is a loooooong day.  Actually, both were.  The short version for those who don't have the patience or time to sit through long-winded explanations is that he's doing pretty good, actually, really good for him.  On all fronts.

Because of his pneumonia, he's back on the vent 24/7, and it's been interesting to say the least.  It's kinda a challenge, adding that weight back onto the wheelchair, making sure we've got enough battery power, checking the oxygen, 'cause he uses more when on the vent.  You know, logistic type things.  BUT he's happier, more awake, more interactive, more mischievous (not sure that one's so good). 


His echo (ultrasound of his heart) looked pretty good, about the same as it has the last few years.  His ejection fraction ( the "squeeze" of the heart) is still very adequate.  An echo isn't invasive.  They don't poke you or hurt you.  But this one took a while, almost an hour.  Almost an hour of helping him hold still (kinda) and keeping him from "helping."  That was hard.  I kept wanting to ask if she was almost done, but at the same time, I knew we needed as much good information as she could get so I didn't want to rush her.  But when you're holding down a wiggly kid and it's quiet and you're watching a screen (that you still don't know how to read in spite of watching soooooo many of these), well, it's exhausting, mentally and physically.  But in the end, Dr. D. was happy with the images.  He ordered a bunch of labs to check function, blood levels, etc, and they all came back looking beautiful.  So the long and short is that he's in a pretty good place.  And maybe in part because he's back on the vent.

See, pulmonary hypertension, high blood pressure to the lungs, it's complicated (of course, what isn't??).  Ventilators keep lung pressures artificially high, so if it's not needed, getting off is best.  But if the lungs aren't staying open, if they're collapsing down at all (atelectasis) it's harder for the blood to move through the tissues, further increasing the pressures.  So are they or aren't they?  That's the million dollar question.

With trach/vent we see pulmonology, special needs, and ENT.  There we talked about lung function, how it's doing, his ears, his scoliosis, nutrition, supplies, equipment, and nursing; all that.  Fun times, let me tell ya.

And how's his scoliosis progressing?  Well, we already checked that with Shriners so it was just a transfer of information. 

The ears?  Well, tiny canals, too small for tubes, and has his cholesteatoma come back?  Only true way to tell is surgery, and the next best is a CT scan. 


Weight?  He seems to have put on a bunch of weight in just a month, just over five pounds!  His calorie intake really hasn't changed, so is he retaining fluid?  I know he's "backed up." 

His lungs?  Again, is the vent helping or hurting?  Again, we probably need a CT to know more.

And then there's the semi-annual ultrasounds that he's supposed to have for liver and kidney cancer screenings.  Yeah....  I've kinda put them off.  It's been 18 months...

So that's the gist of what was covered in clinic.  The long and short is we're re-looking at his food and fluid intake, trying to make sure he's "going" enough and not holding onto either fluid or stool.  He sees neurology next week so we'll get another weight on him then.

We've got orders for ultrasounds along with one more blood test to check his vitamin D levels, trying to cover all the bases here.

The lungs and ears?  Well, right now we're in a holding pattern.  Come spring or early summer and no illness, he'll go in for a CT scan of both.  Because he doesn't have the ability to hold still and cooperate, he'll have to be sedated, and he and sedation don't get along real well anymore.  He'll stay on the vent until they can check exactly how his lungs are working and there's simply no way anyone wants to take him in without him being in tip top shape for several weeks.  I wouldn't allow it anyway.

Right now, he's not in "tip top" shape.  He's been sick again.  He came down with a cold on Friday but the good news is, he's handling this one pretty well.  He peaked Tuesday night into Wednesday morning and aside from being a bit more tired and a lot more albuterol (okay, and oxygen and slightly higher vent settings), he's carrying on like nothings's going on!

So that's where we are medically.  And congratulations if you made it this far.

We're working on his computer.  I'm trying to learn how to optimize it.  That will have to be the subject of a different post.  This one's too long already.  But suffice it to say, he's really, really good at throwing pies at faces.

Happy New Year, everyone!

"Medicine is a science of uncertainty and an art of probability."
William Osler

Thursday, December 27, 2018

Merry Christmas!

Okay, so I'm a couple days late.  Forgive me.

But it was a good Christmas, very good.  Ever since we moved here 14 years ago, our kids have had a slumber party in the basement on Christmas Eve.  You know, all in one spot, easier for the big guy to sneak in and deliver presents, easier for the early birds to roust the night owls.  But this year was going to be different.  We don't "have a basement" anymore since the newlyweds moved in.  But Deborah and Bronson decided they wanted to continue the tradition and invited their youngers to join them anyway. 

The upshot of that is we could still hear the party in full swing when we finally made it to bed.  No worries, Santa still came through even though I think some didn't sleep until almost dawn. 

Aaron had a very good night, and a wonderful day.  He was one of our sleepyheads, awake in the beginning but sleeping through a lot of the present opening.  Santa hit it out of the ballpark with him.  He opened a package of light-up maracas and has been making "music" ever since!  Between that and a little handheld "computer" that Gramma and Grampa gave him, he's been making sure we know when he's awake!

Speaking of computers, we've been working with his school and speech therapist for over a year to try to get him a communication device.  It's an eye gaze computer that will let him talk with us.  And it's coming today!!  Now Mama and Daddy need to figure out how to work it, too.  But this will be such an incredibly important tool for him.  He's been using one at school and apparently had a lot of success. 

Except, he's my kid.  You know, the kid that it really doesn't matter where the teacher puts them?  They still find someone to talk to?  Well, the report is that when they need him to pay attention, they have to remove the computer because that's all he wants to do, use it to express himself.  I guess if I had to go eight-plus years without talking to someone, I wouldn't want to be silenced either! 

All in all, a very good week.  He's home, he's doing well.  Sunday morning was rough, but since then he's done great.  Smiles are even back, most of the time.  (FYI: he becomes kinda sad when on steroids.) 

He is back on the vent 24/7, and will be for quite some time if not from now on.  We'll have to see how his lungs do in a couple months.  Yeah, it will take that long for them to fully heal.  We see cardiology today, trach/vent clinic (ENT, pulmo, special needs, nutrition, respiratory) early January, and neurology mid-January.  Wonder what he'll have to say to all of them... 


"Communication is something we all take for granted."
Miriam Margolyes

Thursday, December 20, 2018

We’re Here! (Home!)

We did it, HE did it!  We made it home yesterday, even in time to surprise Michael and pick him up from school.

So much to do, food, meds, laundry (okay, haven’t actually done that yet).  I can’t find my room, but I did find my bed. Woke up this morning in my very own bed.  Glorious!!

He’s not “all better” yet.  He’s still struggling.  We’re playing with vent settings because sometimes one works better, and other times, another.  One lets him generally oxygenate better, but the other allows him to move the “junk” that’s still in his lungs and get it out.  So we alternate.

He’s still on a lot of breathing treatments and is half-way through a course of steriods.  Ah, yes, steroids.  They do amazing things for his breathing.  But they also make him sad.  Sigh...

But still, home!!

It’s good.

“What is Christmas? 
It is tenderness for the past, courage for the present, hope for the future.“
Agnes M. Pahro

Tuesday, December 18, 2018

Groundhog Day

I didn’t realize it had been so long since I’d updated on our little Superman.

We’re still here, still hanging out, still on way too much oxygen.

Every day seems to go the same way.  We’ve weaned the oxygen down to a manageable amount overnight, and the plan is to watch, try to keep him there, and go home in the morning.

But then the day happens, I guess you could say, “life happens.”  He wakes up, plays, needs more and more (and sometimes more) oxygen.  And we’re quickly back to where we’re maxed out on what the home vent can deliver, much more than we can deliver for any significant amount of time at home.

He’s finished his antibiotics.  He’s pretty much “hanging out.”  We’ve tried increasing his PEEP (the pressure that’s always in your lungs) to see if that helps.  It really hasn’t done much at all.

Albuterol has helped, kinda, but last night we decided to up it to see if maybe it could do more than it was.  He started getting it every three hours instead of every six, with the plan that if it did seem to improve, we’d consider steroids as well.  If he’s not oxygenating because his lungs are reactive (asthma), steroids can also help.  But the downside is that steroids decrease the body’s immune system, making it harder to fight off infection, and easier to get one.  And that goes for both bacterial and viral infections.  (Can I just put him in a bubble?)

Albuterol did seem to help, quite a bit overnight, so now we have orders for a five day course of steroids.  IF he reacts the way he has in the past, we really might come home tomorrow.  Pretty big “if.”

But as William keeps reminding me, we’ll just do what is best for him.  We’ll give him the time he needs, be grateful for the time we have with him.

Last night I climbed in bed with him to sing him a bedtime song.  Big mistake if I thought it would help him go to sleep.  Instead, he took it as a sign that the party was just getting going!  Funny kid.  So we sang for about an hour.  But as I sang the last line of “Edelwiess” I choked up.  I have no doubt that this little boy will bless our home life forever.  I hope we have many more days with him here on this side before he goes “home.”  But I do know he’s ours, forever and ever and ever.  And the lessons he teaches us will be with us just as long.

Edelweiss Edelweiss
Every morning you greet me
Small and white
Clean and bright
You look happy to meet me
Blossom of snow may you bloom and grow
Bloom and grow forever
Edelweiss Edelweiss
Bless my homeland forever
The Sound of Music

Saturday, December 15, 2018

Slow and Steady

He’s making progress.

We’re still here, he’s still not the way he’s “supposed” to be.

But he’s getting there.

Yesterday he had come down far enough on his oxygen to try his home support settings.  They worked, but he promptly went back up on his oxygen.  We also started pulling all sorts of nasty stuff from his lungs.  The thought is that with the higher settings, we weren’t able to mobilize it because his lungs were hyper-expanded.  They didn’t have enough room to really collapse enough to be able to move that junk.  But on the other hand, without the hyper-expansion, he wasn’t able to get good gas exchange.  You know, good air (oxygen) in, bad air (CO2) out.

We didn’t make much progress on his oxygen yesterday, but today has been a bit better.  He’s down to 65% right now, awake and playing.  That’s a really good sign.  Once he can be stable on 60%, we can try the home vent.  Then it’s working our way down to what we can do at home.

I’m a little nervous that we haven’t had any setbacks at all, but I’m also hopeful.  He’s now at day 6 of this whatever it is.  Just because the viral panel was negative doesn’t mean there’s not a viral component.  It means that it wasn’t one of the ones they can test for.  But he’s also switched from IV antibiotics to a g-tube one.  In fact, it’s the yummy pink stuff we used to take for ear infections and such. Too bad he doesn’t get to taste it.

So we’re still waiting.  He’s playing, watching TV, being silly with the nurses.  I don’t think we’ll be home this weekend, but I’m optimistically hoping for Monday.  Maybe not.  We’ll see.  But we’re still 10 days out from Christmas.  I’m confident we’ll be home before then.  Until then, we’ll make the most of our time here.

You usually have to wait for that which is worth waiting for. 
Criag Bruce

Thursday, December 13, 2018

His “Spark” is Back

He’s happy again!  He still needs a TON of support.  We haven’t been able to reduce his oxygen or the additional supports on the vent.  He’s still a pretty sick little guy based on numbers.

But his demeanor, yeah, our monkey is back.  And it’s wonderful.  He’s back to “helping” with diaper changes, suctioning, refusing to stay upright where it’s easier to breathe.  He played pretty much all day, as opposed to yesterday where he just slept.

And I can’t say what a relief this is.  On Thanksgiving I asked William if I was weird because every Thanksgiving I wonder if we get to have Christmas with him.  They’re only a few weeks apart.  But his first Thanksgiving I remember standing over his cradle and sobbing that I just wanted one Christmas.  And we almost didn’t get it.  He was crashing and Lifeflighted from the house the next morning in the very early hours.

Those thoughts ran rampant through my mind on Tuesday night.  It was hard, scary.  I wondered even into yesterday how things were going to play out.  Were we going to get Christmas, only two weeks away?

But today, today is so different.  He’s not better.  He’s got a long ways to go.  How long that takes is anybody’s guess.  We’re almost 48 hours into antibiotics, and they may just “fix” everything quickly. It may take longer.  His pulmonary hypertension could still kick higher.

But Aaron is back.  And we’ll make it back home.  And I have no words to express my gratitude for all the prayers and love and support that have been offered up on his and our family’s behalf.

“A mighty flame followeth a tiny spark.”
Dante Alighieri

Wednesday, December 12, 2018

”Big” Sick

Not even quite sure where to begin this.  It’s all still processing, percolating, or maybe even just trying to avoid reality.  But here goes:

Aaron was a little “off” Saturday afternoon and Sunday.  Almost seemed more like tummy issues than anything.  In fact, by Sunday afternoon, he was doing better.  Totally fit into a “24 hour bug” kind of thing.  Okay, whatever.  He’s a kid, right?

Then Sunday during the night, he started struggling with his sats, and his heart rate went up, too.  He had a low-grade, barely even there, fever.  Asthma?  Probably.  The air quality is pretty nasty, although better in Alpine than down lower in the valley.  But he stayed home from school on Monday, and I figured maybe Tuesday, too.

Monday night was worse, but still, not crazy.  The nurse called me at 1 am because he was struggling so much, but we bagged him while also giving Albuterol and again, low grade fever.  Most important, even though his vitals weren’t awesome, his demeaner was.  I mean, this kid was a nut!  It’s 1 am, the nurse and I are bagging, suctioning, giving albuterol, and he’s laughing at us, grabbing cords, and being oh so “helpful!”

Here’s the sad, ugly truth about family medical life:  We schedule our emergencies.  How twisted is that?  But we do.  Obviously, when it’s truly life-threatening, we drop everything and run, but we also learn how to manipulate the system (our kids?) and cram other things in, too.  I had a work assignment, and they kinda frown on subs cancelling at the last minute, although they also would have totally understood.  I had an appointment in the afternoon that I needed to keep if at all possible.  But that said, I wasn’t sure either of those were possible.

When I went to the school, I let them know that things were pretty dicey at home.  I appologized to each of my classes about keeping my cell phone on, and told them that I would only answer calls from my nurse or home. I checked in through the day via his camera.  He was sick, we moved to giving him albuterol every hour, but still, he was (mostly) “okay.”   In fact, his nurse sent me this video of him being “sick.”  He’s being bagged, but seriously, does he look like he’s in trouble to you?



And my students were so sweet.  I even had a couple come back later in the day to check and see if I was still there and ask how he was doing.  But then Holli (his nurse) called as school got out.  He was in the upper 60’s and not coming up well even on 15 liters being bagged.  Michael and I ran (literally) to the car and raced home (five minutes away).  I debated about whether to call her back and get the ambulance on the way.  But when we got there, he was back in the mid 80’s, where he hangs out anyway, and he was moving back to the ventilator.

We watched him for a little bit, and I asked her what her gut was saying about things.  She said he could probably hang on until I got back at 6 or 6:30.

Don’t get me wrong, I knew, knew, he was going to the hospital and going to the PICU.  But you know, that whole “schedule the emergency thing...”

I did leave my bag packed, told her what needed to happen if he just wasn’t going to last, let Andrew and Michael know what kind of help she would need, you know...

Well, he did “okay” until we got back home, and then he was DONE!  He dropped again into the mid-60’s and we had a hard time getting him into 70’s.  I told William that this was going to be a fast “throw and go” when the paramedics got there.  We weren’t going to be messing around.  In fact, with him hanging in the lower 70’s, I worried that they might call for the chopper.  He did manage to get to lower 80’s by the time they were there, but we still moved pretty quickly.

We got him loaded and took off, and he dropped again.  And stayed down.  Cranked the oxygen up, suctioned, started albuterol continuous.  They hit the lights and sirens.  And we worked him.  We came in on 20 liters of oxygen, bagging, 28 puffs of albuterol one minute apart, and blue-purple lips.  Sats in the mid 50’s to lower 60’s.  Fever  of 104.8.  Yeah, almost 105 degrees.  I don’t think I’ve ever seen my little boy quite this sick.

And here’s the thing:  when someone comes in that sick, it’s a crowded room, lots of things going on, lots of people.  And they work together really, really well, which scares me to death.  I know for a lot of people that calm and smooth process is really good.  But when various specialties work like that, it’s because they’ve practiced, because when it’s critical, they have to.  Lives depend on them.

We had two IV teams.  This kid who can take an hour plus to get an IV had two large ones running almost immediately, and one had a high-powered antibiotic going through it.  The RT had him on a vent, off the vent and on an ICU bag, and we changed out his trach within minutes.  The doctor, three nurses, two tech were all in there as well.  X-ray was right outside the door.  It was scary, terrifying, and heartbreaking.

The upshot of it all is that he came back negative for viruses (at least the ones they can test for) and positive for a right-sided pnuemonia, that we’re assuming is bacterial based on the negative viral panel.  They’ve pulled blood to test for bacteria and the antibiotics he’s on will cover those if he’s got sick blood.  Sepsis is a real concern, and it’s not something you ever want to play around with.

All in all, he’s a very sick little boy.  On the positive side of things, he’s still on the ICU Trilogy (the ICU version of the vent we use at home).  We’ve got lots of room to escalate things if we need to.  The down side?  He’s pretty much maxed out on it, he’s still pretty lethargic, and it’s going to get worse once he does wake up.

He’s not “helping” with any of his treatments.  He’s leaving his cords alone.  When he’s awake, all he wants is to go back to sleep.  So he does.  We’ll let him sleep as much as he wants to, and hopefully it is a healing sleep.  It’s almost Christmas.  Our bug needs to get better and come back home.

“Prayer is an act of love; words are not needed. 
Even if sickness distracts from thoughts, all that is needed is the will to love.”
Saint Teresa of Avila