Sunday, May 15, 2022

It's Been Hard...

It's been a busy month around here.  But then, I'm not sure when it hasn't been.

Since Easter, Aaron has continued his ups and downs.  We were admitted again the first week of May for a few days.  (May 3-6)

He was struggling, again, and clamped down hard to where we weren't even able to bag him.  THAT hasn't happened since he was tiny.  That time was shortly after his trach surgery and led to three attendings at his bedside at 2 am, pushing three different sedatives through his IV.  

This time it was me and his awesome school nurse.  And we gave him Ativan in hopes of relaxing him enough to get him to let us help him breathe.  

It worked.

In fact, it worked well enough that by the time we got to the hospital parking lot, I considered whether or not we really even wanted to go in.  We did.  They admitted him and decided it was a pulmonary hypertensive crisis combined with an asthma attack.  

Can I just say that either alone is a challenge for gas exchange?  Together??  Well, no bueno.  So the asthma narrows the airways and makes it hard for the air to get in and out.  Pulmonary hypertension tightens the blood vessels that are supposed to be carrying that oxygen and carbon dioxide.  So let's not just have one problem with our lungs, let's have TWO!  

And then while there, we discovered that the eye infection he's been battling since he was so bad in February had morphed into corneal ulcers with infection.  Fortunately, with new antibiotic drops and hourly round the clock moisturizing drops for a few days, it seems to have almost completely cleared up now.  

In the middle of all of this, I was finishing finals and Mary graduated from the U with her MBA.  Fortunately, I only had one left and managed to take that while also in the PICU.  Mary's convocation and commencement were right down the road from the hospital.  They were wonderful!  I do love all the pomp and ceremony.  One more year and I'll be doing the same (just further south).  

You know I said it was busy.

We've now seen ophthalmology (May 9) and comp care (May 11) and are scheduled in with cardiology on May 23.  We're playing with medications again and changing up his food.  He's eating a blended diet again while we try to work everything out.  He does do so much better on real food so we're also seeing a dietician the end of the month.  Good thing I'm on summer break from school, right??  

Right now, he's continuing to struggle.  He's fevering again off and on.  Sometimes it responds to Tylenol/Motrin suggesting an illness, sometimes to rescue meds suggesting storming.  He's happy.  That's huge.  But I feel like we're always on edge right now.  

This is hard.  I don't know where it's going, at least short-term.  I know where the long-term is going and I refuse to think about that, at least as much as I can.  

So that's where we are, where he is, where I am.  

I'm glad summer is coming, I've missed the sun and the warmth.  I am looking forward to a slower pace for a couple months.  I'm grateful, more than I can say, for his smiles!  In a lot of ways, this is easier than when his vitals were looking good but he wouldn't/couldn't smile.  I figure, as long as he's smiling and playing and being goofy, we'll get through it.  

But I would really love it if he could stabilize for a while.  It would make my mama heart happy.  I think we both need a rest.

“Take a rest. A field that has rested yields a beautiful crop.” 
– Ovid

Sunday, April 17, 2022

Easter Morning

It's quiet here right now.  Most are still sleeping.  The sun has risen.  I have time to think.

But I'm going to be real here, sometimes thinking is not what I want to do.  It's easier to deal with pain, worry, frustration, fear if I can stay busy, always be rushing, be concerned with "doing."  

Thinking, that's hard. 

It's been difficult here, here in our home and here in my heart.  Aaron has not been doing well.  It started oh so slow that we didn't really recognize it at the beginning of the year.  Then like a train gathering steam, it chugged on, accelerating, pretty much rocketing out of control by mid-February.  We (kinda) got it under the danger limit by the end of February, but still, that train kept moving.  

In reality, it's been moving since the moment of his conception.  We didn't actually realize it until that first ultrasound.  Like all of us, that train moves constantly in the direction of death, but for some, it moves at a much faster pace.  Sometimes we get to glide gently and smoothly into the station.  Others face derailment, catastrophic overturns, or other painful ends.

But sometimes, that rough track eases up, the vistas open, and the ride isn't quite as rough as it has been.  In looking at Aaron's medications, there was one that was well below a therapeutic dose for his weight.  We increased that.  We considered the tightness of his muscles, especially when storming (hypertonia and spasticity) and added another drug.  This one was purposely dosed at below a therapeutic dose to see if he could even tolerate it.  A known side effect is depression of the central nervous system.  Also a known side effect of a couple of other meds he takes.  We'd be a whole lot more worried about that if the vent wasn't already breathing for him, but even so, we wanted to make sure he didn't knock him out too much.  

That scenery?  It's looking a lot better now.  The train is still moving, but the speed seems to have slowed a bit.  The increased dose of his first medication helped ease a lot of the pain he seemed to feel.  That second med has made it so his legs and arms move more freely and without pain.  He might be a little more tired, but pain is also exhausting.  

We're getting laughter and smiles again.  

He's going to church today.

It's Easter Sunday.  Good Friday must have been a truly awful day.  Their Friend, Savior, Messiah had died, was lying in a borrowed tomb.  Saturday would have been lonely, scary, where do we go now?  Will this pain ever stop?  How do we go on?  But then Sunday came.  Sunday always comes.  

Because of Him, we will live again.  The grave is not the end.  This life is not all there is.  Pain will depart, bodies will be whole.  We will live with our loved ones and enjoy their company again.  Because of Him. 

He is Risen.

Sunday, March 27, 2022



Here and now…

My word this semester is breathe…

Breath, life, focus.  It’s not like we can put it off, or breathe ahead of time.  If someone stops, there are literally minutes until there is no chance of reversal. There are no do-overs, no mulligans.  

We HAVE to do it.  Always.  

Wanna watch wheels spin and minds strain?  Tell a bunch of 7th graders that you have a child that thinks breathing is optional.  

“Wait, what?  I thought I knew what optional means.  I know what breathing is.  Maybe I don’t know…”

Nope, not really optional.

Breathing brings oxygen to our cells, takes away the waste.  Life-giving, the essence of who we are.  Oxygen brings the healthy glow to our skin.  Without it we are dusky blue, gray.  Lifeless.  

But breathing, deep breaths, they calm us, center us, remind us of our “being.”  Remind me life is precious, fleeting, fragile.  Now is all we truly have.

Focus, now, be in the moment, joy, spirit.  


He who only half breathes, only half lives. 
~Sanskrit proverb

Sunday, March 20, 2022

Trisomy Awareness and Uninvited Gifts

So I've pretty much missed it.  

Trisomy Awareness month and Trisomy 18 Awareness Day.

I didn't even remember to wear blue on Friday.

BUT, for us, every day is Trisomy 18 Awareness Day.  And I hope for my family and friends, they're pretty aware, too.  

For us, Trisomy means having more medical equipment than you even knew existed.  It also means having more love than you knew was possible.

It means measuring outings in battery power and oxygen needs.  It means measuring days by smiles and grins (and goofy jokes).

It means special needs schooling, IEPs, and evaluations.  It means bringing nurses into your home that become family and impact everyone's lives for the better, not just his.

It means learning a whole new language, new culture, new life.  It also means figuring out when you're 50 what you actually want to be when you grow up.

It means treasuring life beyond measure, and knowing you'll say good-by much too soon.

Trisomy is indeed the Journey of a Lifetime, not just his, but ours as well. 


Update on Aaron:  There are two reasons I haven't been as on top of things as I usually am this month.  First is school.  I am loving my Masters program, but it is INCREDIBLY time consuming!  I have been writing, TONS!  But my professors are the ones that see it and I don't think it's stuff the general public would find interesting anyway.  

The second is that Aaron is requiring a lot more care.  He'll have a good day or two, and then some pretty bad ones.  Friday was awesome!  The pictures are from a field trip they took.  He's still not as smiley, but he went swimming and bowling and had a great time. 

Now?  Well, he hasn't slept since his nap after school on Friday except for some 5 minute micro-naps.  He's fevering again, more today than yesterday.  We're using Tylenol and rescue meds and they put a dent in things, but that's about it.  

This is hard, really hard.  Emotionally and physically.  It reminds me of our first year with him.  We've spent 32 days in the hospital since January 14th over three different admissions.  Being admitted takes hours as they do work-ups and make decisions, while also attending to other patients ('cause you know we aren't the only ones there).  

It takes another four hours or so coming home.  An hour to get everything ready to go, an hour to drive home, and another two hours to get everything settled and taken care of here.  (Equipment needs to be changed out and meds processed and organized, etc.) I also had no nurse Wednesday night when we got home.  It doesn't happen very often, but Wednesday was one of those times when there was no one to cover.  So it was me.  By Friday, March 18, Trisomy 18 day, I had nothing left to give.  I made it through classes (somehow) and crashed hard.  

But we keep doing it.  We keep on going.  He's worth it, he's MORE than worth it.  Those smiles, that spirit.  Even when he's sick, it shines through.  In a conference for school this week someone referred to an "uninvited gift."  

"Uninvited."  Yeah, certainly didn't ever hope or dream of having a child who had to deal with so many challenges.  But he definitely is a gift, a gift from God.  

"Every good gift and every perfect gift is from above,
and cometh down from the Father of lights..."
James 1:17

Wednesday, March 16, 2022

Heading Home

We're outa here this evening!  

Yep, heading home.

All in all, it looks like he was having some sort of muscle spasms or something, some kind of pain.  X-rays were all normal, they even did ultrasound of his feet to make sure there wasn't fluid or tendon involvement.  It was all good.

So here we go.

His feet are still not in a neutral position and he really resists putting them that way.  He was offered botox or serial casting (we did that when he was really young).  Honestly, I just don't care.  Botox are injections, and have to be done repeatedly.  Casting would restrain his feet.  Frankly, this kid isn't on the track or football team.  He doesn't even walk.  I just don't care to put him through that.  

We're going to move on.  We may revisit it when he's doing better.  Right now, I just want my kid be home and happy.  I think those are pretty good goals.

"It’s been my experience that you can nearly always enjoy things if you make up your mind firmly that you will."

L.M. Montgomery

Sunday, March 13, 2022

We're BaAAack

Wheelchair tune-up on Tues.
Yeah, kinda says it all.

Aaron's feet are kinda wonky right now.  When he was born, he had a vertical talus, also known as rocker bottom feet.  They were the opposite of club feet, angling up and out.  Sometime over the past month or so, probably when he was sooooo sick, they started curving in and down.  He started wearing his DAFOs (braces) to help them straighten back out but that may have caused pain.  Who really knows?  They didn't create pressure markings on his legs or feet, but it was challenging to get his feet in.  

Anyway, by Thursday, he acted really pained anytime his feet were touched, especially his left foot.  I wondered if there was some sort of injury.  We quit using the DAFOs and let him rest.

Saturday I decided maybe he ought to be seen, but mid-day (when I thought I'd take him) he was starting to look better, so maybe not?  (There's a LOT of second guessing going on here.)  Got some stuff done that morning and even got a nap in (YAY!).  Woke up from my nap and thought, we need to go in.

It was kinda weird.  I woke up and thought, "going to make the pizza I've been planning to make since Monday and then take Aaron in."  There wasn't any urgency or anything.  It was almost like, "gonna have dinner and then we have a soccer game, or a kid's concert, or whatever."  Just a matter of fact thing.  

Took him to our local ER, American Fork, because I figured it was feet and they could at least tell me what was going on, and maybe even fix it.  They may have.  I mean, once we got x-rays, he started moving them.  You know, like when you take the sick kid to the doctor and he starts acting fine just before the doctor comes into the room.

But they also did other x-rays and ran a bunch of labs.  In part I think because here's this incredibly complex kid, let's make sure we don't miss anything, and in part because we were going to do labs anyway on Monday.  Two days early isn't a big deal.

Yeah, about those labs...

Kinda wonky.  Kinda really wonky.  White blood count of 18.9 (normal 4.5-13.5), platelets of 263, which is normal but not really for him, and a jump from 55 the week before.  He usually hangs out about 130, normal is 150-400 and his highest ever was 188.  There were other markers as well.  

Now, it's possible that these are all related to pain and storming.  But it can also be indicative of a bad infection.  Guess where he is now?!?

Yep, in the PICU.  He also decided that he really liked the oxygen more.  He's hanging out on an ICU version of our vent using a bit (not a lot) more oxygen than we can deliver with our home vent.  He's also not sleeping, like at all.  I told him that he has to sleep before I'll hang up his toys.  

I told him when I first started working on prerequisites for my master's program that he had to behave.  I couldn't do school and hospital, and he listened at first!  I mean, really!  He took a trip a week after I finished those initial courses.  And last semester he did really well!!  This semester?  Well, it's almost starting to feel like that really rough first year.  Except that year I only slept in the PICU.  I never slept at home, I was too afraid.  I've told him I really like sleeping in my own bed now.  What a monkey. 

This kid ... 

I can't even.  

But hey, he's here.  He's still with us.  And that's so much more than so many other parents have.  We'll just keep keeping on. 

Do what you can, with what you have, where you are. 
— Theodore Roosevelt

Thursday, March 10, 2022



We've got smiles!

Pardon the lighting, but this was late last night and I didn't want to use flash or turn on the light and disturb the show!


I honestly don't remember our last true smile.  How awful is that?

I know we haven't seen them since he went to the hospital on January 30th.  

It's March 10th.

Almost six weeks without a real smile. 

My mama heart has struggled the last eight weeks.  That's how long it's been since he acted like himself.  Truly, it probably started around Christmas.  That was almost three months ago, but he was still smiling and playing until eight weeks ago.  Then there were moments, sometimes a day or two, where things would be "normal" (whatever that is).  

He's still tired.  He still is not goofy and silly.  But we have smiles.

¨A smile is a curve that sets everything straight.¨ 
- Phyllis Diller

Monday, March 7, 2022

We've Been Home 2 Weeks Now

Leaving the hospital
I'm sorry, I really thought I wrote. 

I guess I didn't. 

I did put up a picture on Instagram and his Facebook page, but somehow overlooked the blog.


Anyway, we did come home on the 21st, two weeks ago.  It was rough.  Honestly, I had to work to persuade the doctor to let us go.  

He was (and still is) needing rescue fairly often from his storms.  His sodium and potassium levels were very much suboptimal.  Still fevering.  But really, there wasn't much at all that we were doing there that we couldn't do at home. 

So with plans for at home labs and a visit with Comp Care as soon as could be arranged, we left.  


It's been rough.  Really rough.  He is still nowhere close to his baseline.  Initially, we were having to use his rescue medication at least once and often three times a day, which is the max.  A couple times things almost got away from us and we were using fans and cold cloths as well to bring fevers down.  But slowly, ever so slowly, he's improving.  And we're also getting better about intervening quicker.  

He still sleeps a LOT, and smiles are few and far between, and very small.  He doesn't appear uncomfortable, just oh so tired.  

But he hasn't needed his rescue med for about 48 hours now, a record, and he has gone to school a few times since he came home.  There is progress, and we're grateful for it.  

I'm praying that the reason it is so slow is that he was literally at death's door four weeks ago.  We're still watching a few labs.  He's still very bruised.  But I'll take whatever progress we can find.  

I mentioned yesterday in church that we are so very grateful for all the prayers offered on his and our behalf.  They are very much lifelines to God, and we cling to them. Thank you, thank you so much.   

The candle of prayer answers the darkness. 
~Terri Guillemets

Sunday, February 20, 2022

Still Learning, Still Here

EEG, he wasn't too impressed.
We hoped to be home by now, but not quite there.  

It does look like autonomic storming.  This is a diagnosis of exclusion.  Basically, we go over everything, and when none of it pans out, you start wondering.  Even his EEG showed pretty typical patterns (at least for him).  Over the past few days while on neuro medicine, his symptoms have subsided.  He continues to fever, but it seems like a bouncing ball, generally bouncing lower each day.  Fingers crossed.  We're hoping for home tomorrow.  Fingers AND toes crossed.  

We tried to reduce his medication yesterday.  Um, no go.  High fever again along with higher heart rate, respiratory rate and oxygen needs.  We gave him rescue meds along with his maintenance meds and slowly he came back to where he should be. Hence the decision to stay one more day.

There has been soooo much to learn!  Today we talked about how having to use his rescue meds multiple times over a 24 hour period wasn't out of the norm, but that if we had to use them frequently over several days, it was time to make phone calls to his team.  The biggest risk of his medication appears to be sleepiness and perhaps a diminished breathing drive.  Kinda a big deal for most people but since he has his ventilator that breathes for him, not such a big deal.  

The good news is that even going back up on his dosing AND using his rescue doses, he was still awake for a while this morning and playing with his toys.  I had showed him a really sweet video his school put together for him wishing him well and he was very interested and interactive.  He is loving his movies and stories.  

He's not quite as alert and silly as he usually is, but I'm hopeful that those aspects of his personality will come back. 

I am in awe of this little boy.  He is such a fighter!  We are so blessed to be able to know and love him. 

"Be a student of life and a lifelong student." 
~Terri Guillemets

Wednesday, February 16, 2022


We may have been looking in the wrong direction.  

He may not have had an infection.

We just don't really know, at least for sure.

When someone has a traumatic brain injury (TBI) they can develop dysautonomia which includes neuro storming. Kinda like how the environment is unstable during a storm, so is the brain function in the autonomic region.  That's the part of the brain that keeps the body in homeostasis (which we really like!).  It controls body temperature, heart rate, digestion, perspiration, respiratory rate, you know, minor things like that.  Doctors are starting to recognize that kiddos with congenital brain disorders can develop this, too.

Sometimes when the weather predicts a storm, it's mild, no biggie, misting or very light snow flurries.  It might just be windy and we really don't notice.  Sometimes it's a blizzard, or a hurricane.  Sometimes it causes really widespread bad destruction. 


As we look back on the weeks before Aaron's admission, his heart rate was creeping up.  His temps were more unstable with more low grade fevers that didn't always respond to medication.  We've had more issues with digestion and constipation.  For the first time in his life, his blood pressures were not in the normal range.  Early on in his stay, they were high.  Then that awful Monday they plummeted.  

Unnoticed, unchecked, neuro storming can be incredibly dangerous.  When the body can't maintain homeostasis, the above can rampage unchecked.  Really high fevers, high heart rate, high breathing rates, high blood pressure, which can all damage organs, leading to sepsis-like issues.  And death.

We are still trying to make sure nothing has been missed.  He finished his antibiotics yesterday and cardio wants to get blood cultures the next six times he runs a fever (which may be as often as twice a day).  He's concerned that there might be an infection still lurking that would have been hidden by the antibiotics, and Aaron has some unique places that it could develop, like his floppy heart valves, the holes in his heart, and the one we just found in his femoral artery/vein.  Endocarditis would not be a good thing.  

I also want to make sure there isn't an underlying seizure issue going on.

But we've made it out of the PICU and onto the floor.  They've put us on the neuro-trauma unit because I guess that's where we fit the best this time.  It's a new one for us.  That's okay, they're taking good care of him.  Chances are better than average that we'll go home with some new medications.  They do make him less interactive and a bit more sleepy.  But he's alert when awake, and he's stable.  I really, really like stable.

“If the storm had a conscience, it could not be a storm!”
― Mehmet Murat ildan

Friday, February 11, 2022


 Inchstones.  You know, as opposed to milestones.  They're tiny steps, often painstakingly won, that mark the progress to the big goal.  

Our goal?  Return to health and home and happiness.  (Gotta love those "H" words.)

But back to those inchstones.  He's making them!  I haven't written because his progress has been so slow.  But slow or not, it's been real.  

They're removing a couple of medications that he's been using but keeping one more high-power antibiotic.  He's still getting various elemental replacements that he lost.  He did develop a GI bleed but that also seems to have stopped.  He has developed tremors that are still being treated with sedatives, but a bit less every day, and lower fevers as well.   He is also still very swollen, especially his belly and lower extremities.  He's started getting food again, although it's continuous and just over half what he usually gets.  We're working it up to where he should be.  

Doctors are looking at a couple more things as we STILL don't know what has driven all of this.  

But all in all, things are very much looking up.  I don't think we'll be home any time soon.  We could be.  He has surprised us before.  But my guess is it will be a while before he's stable enough for that.  It's more of a marathon than a sprint, and frankly, I'm not good at any kind of running.  But that's okay.  We're going to be able to take him home.  Not everyone is able to do that.  

"The lesson of history is that most advances are by half-step, 
most progress by partial success." 
~Robert Brault

Wednesday, February 9, 2022

The Dumpster Fire Blew Up

WARNING!!  Do NOT read if you've experienced medical trauma, especially with your child.  I'm trying to process and get things down for future reference.  PTSD sucks.  Just don't do that to yourself.


Daddy reading stories on Tuesday

So that last post from Monday: he DID look better in the morning, but it was early, and he was asleep, and things always look better then.  Or it was the calm before the storm.  Or maybe the eye of the storm.  Whatever it was, it wasn't nearly as good as I hoped.  

That dumpster fire?  It blew up.  Pretty bad.  

Monday he didn't want to wake up.  He would respond to pain.  He tried to pull away from that IV.  When the RT's hands were cold, he flinched.  He never opened his eyes.  We did not see pupils.  And he didn't shift in bed.  

We took him down for CT scans, and he didn't need to be sedated.  We moved him from his bed to a gurney to the machine, and then back again, and he didn't move.  

While his oxygen and his temperature stayed relatively stable, that was pretty much it.  That afternoon his blood pressures dropped.  His skin mottled.  His hematocrit, platelets, other clotting factors totally tanked.  He usually has low platelets.  For reference, normal platelets are 150-400 K/mcl.  He usually hangs about 130-140, so just below the normal limit.  Monday?  15. Yes, a 1 and a 5.  With nothing else after that.  

Sepsis.  Flirting with DIC.  Still no idea where the infection driving this is coming from.

They've done cranial, maxillofacial and thoracic CTs.  Echo. Abdominal and all four limb ultrasounds.  X-ray upon x-ray.  Blood, sputum and other cultures both for bacteria and fungus.  

When he's in the hospital, he uses a posy bed.  That's the green tent-type thing you sometimes see in his hospital pictures.  He uses it because he's a mover and a shaker.  He'd go out through the cracks on the side rails of a normal hospital bed.  It's a safety thing.  Except those zippers that keep him safe also have to be undone.  His team approached me about changing.  We were possibly moving to where every second counted, and the posy bed became more dangerous than a regular bed.  He was moved to a central location in the PICU (We'd been in the overflow area.) and they quickly and carefully moved him to a regular bed.  

Fluid boluses were pushed quickly (actually before we moved) and blood was hung for rapid transfusion.  They had already sent a chaplain and our ped had called me.  I think they were really working to prepare me.  

But here's the thing: I didn't think this was "it."  I didn't like it, AT ALL!!  I knew he was beyond precarious.  I told our attending that if the end was coming and I didn't see it, she had to tell me.  She assured me gently that she would.  

But I still felt like (and still do!) that he would pull through.  I'm also very aware that this is a long, rough road back to health.  He's still tenuous.  It wouldn't take much to tip in the wrong direction.  But today while his fever is back (again!), he's awake and interactive, and has been since last night.  Yesterday, he was awake all day.  He's currently on about 36 hours awake (with one 30 minute nap).  

FYI:  while we certainly treasures prayers, there is something else that people can do to help.  That blood shortage is a very real threat.  Even as bad as he was, the reason we didn't transfuse blood immediately is that it had to be processed through various channels before approval because of the extreme shortage.  It took time to do that, like an hour or two.  Please, please, if you can, donate blood.  It WILL save lives.  

“The mind replays what the heart can’t delete.” 
– Unknown

Monday, February 7, 2022

Joy Cometh in the Morning

Last night was rough. It was bad.  "Dumpster fire" "Very tenuous"  "Few options"

It's never good when they can list options available.  It was a short list.

He was back to 105+ in his fevers.  Saturday he'd been at 106.1.  We've been piggybacking Tylenol and Motrin and using ice packs.  He was moved over to the ICU vent, not just the ICU version of our vent.

In our church, the young men assist in the Priesthood and last night, Michael was being ordained a Priest so I went home for a few hours.  He wasn't great when I left, but he was stable.  

Not so much when I got back.  Like, they were listing out our available options and there weren't a ton. The doc added Ativan and Clonidine to help him relax. They were talking about sedation and paralytics to allow his body to completely rest, central lines to administer meds, nitric oxide to help open the lungs, possibly proning him (putting him on his stomach) to try to recruit whatever lung tissues might be closed off. "Very tenuous" was used over and over. He was on the hospital vent at 100%, satting about 70% with dips, breathing too fast, heart rate too fast, fever (don't remember how high) and asleep and not really rousing. Like I said, it was bad.

They had stopped his feedings, essentially skipping one, and were considering putting him back on them. I asked to hold off. He's still pretty hefty. Missing those calories isn't going to hurt and he always needs more support when digesting. They were totally on board with that. We decided the order of treatment was proning, then nitric, and then the paralytics/sedation.

The nurse got really aggressive with the cooling blanket and ice packs (although we'd been using them already), and the fever started to come down. With that, everything else started improving as well. I read him some get well cards from his Sunday School class and he was interested. He batted a little at his toys. His sats improved, and when he went back to sleep, we were able to wean O2 to 80% with sats back in the 80's.

I woke up and they have him at 45%!!! He's still on a TON of support and no feeds, but there's improvement, significant improvement. Frankly, I'm sitting here crying with relief.

I know he's going to need more support through the day. His fever will probably reappear, although hopefully not nearly as high. I'm hoping, praying, and crossing my fingers that the improvement we're seeing is because his IV antibiotics are kicking in and working.

We're still not completely sure of what he's got, but it's looking like tracheitis with MRSA and stenotrophomonas (big nasty bug to go with the nasty long name) growing, and the IV vancomycin should cover it.

On a side note (mostly because this is also where I detail his medical journey and need it for my own information), we've discovered a femoral fistula. (Try saying that ten times fast.) Essentially, back in 2017 when he had a heart cath there was a hole made between his femoral artery and vein. At some point, when he's been well for quite a while, they'll go in and close that off. Its presence makes his heart work harder as the blood mixes between the two, but it's been there for over four years now and there ain't no way anyone wants to even consider surgery until he's in optimal health.

I have no idea how long we'll be here. Yesterday I had the chance to take the sacrament and then the Elders gave him a priesthood blessing. It was beautiful, and I have a hard time remembering what was said. He was blessed with strength, and his family too, and that his body would be strong. But I also got the impression at that time that this was going to be rough and long, and frankly, hard. I pray that he will kick this to the curb, and I think he will.

When he started to get bad on Saturday we asked for prayers and they came pouring in, from family, our neighborhood, and across the world. We have felt those prayers, and they are literally life-sustaining, not just for him but for the rest of us too.

Thanking God today for the love of family, the loyalty of friends 
and the kindness of strangers. 
~Robert Brault

Friday, February 4, 2022

Rapid Response

Thursday night when they were
looking at his trachea.
Soooo, I started a post a bit earlier entitled "More Friends" because that's what we've been adding.  At a couple points we had ENT, Pulmonology and his attending along with Respiratory Therapy and his nurse in here.  And because it's a teaching hospital, ENT has about four or five involved.  Pulmonology always has two.  It can get crowded.  And at another time, we had Infectious Disease (ID) and Pulmo along with his attending and RT and nurse.  There's four of ID.  It was quite the party!  

So Pulmo has been trying to adjust his vent settings so he's not over ventilated, which isn't quite as bad as under ventilated but still not good over all for his health.  ID is involved because 1) one of his trach cultures grew out MRSA (not sure if it's a colonization or an active infection yet) and 2) he keeps running these fevers every few days that we simply cannot figure out.  Yeah, that was going to be the original post. 

Notice that's not the title.

I went down to campus for class today and when I got back, I noticed he was starting to work harder to breathe.  Not too much, but enough that we took another look at him and reversed some of his vent settings to err on the side of caution.  Now, the most drastic changes had been made the night before while the pulmonologist was actually watching his airway through a camera that was down his trachea while the changes were being made.  They're really trying to find the optimal settings.  

Then late afternoon, he popped another high fever (103.5) and it didn't want to respond to ibuprofen or Tylenol.  That prompted a "sepsis alert" where they pull more labs to check his blood and brought ID back in.  Even though we haven't found a specific infection, we all decided that with the fever returning that doing a course of IV antibiotics would be a good idea.  

Shift change and RT comes in to do his evening breathing treatments.  Um, didn't go so well.  By the end of his vest treatment (which he usually really likes!) he was in trouble.  He acted like he was blocked off.  His heart rate shot up into the mid 140's.  (Awake and playing he's not usually even much above 110.)  Fever was still quite high, he was working very hard on breathing, and his color was pretty deep red.  We bagged him, changed out the trach and I asked for the doctor.  The nurse asked if I wanted the rapid response team, and I wasn't sure.  I wanted to see if we could settle him.  I don't know if the nurses or the attending made the call, but someone called the team anyway, which was fine. 

So now we're in the PICU.  STILL don't know why the fevers keep coming back.  We've checked out pretty much every system except his GI system, which seems to be functioning just fine!  He's now sleeping.  I'm hoping to sleep.  Although to be honest, while the couch upstairs really wasn't that comfortable, the chair I now have is going to be even more challenging.  

I would really like some answers.  So would everyone else.  

"It is always wise to look ahead, 
but difficult to look further than you can see." 
Winston Churchill

Tuesday, February 1, 2022

Still Looking

CT brain scan, thankfully negative.
We still don't know what's going on.  We're grasping at straws.  

 ENT said it's "possible" his right ear is having issues, but not definite, and it's "more than likely" that it's perforated given that there was a little bit of drainage in there, so they stopped his systemic antibiotics, started him on ear drops, and sent the little bit they could get for cultures.

Cardio came by and discussed possible blood infections and what that could mean for his heart, and maybe fungal infections and what those could mean for his heart or brain.  Just an FYI, those are not happy things.

We discussed seizures.  We discussed lungs.  We discussed possible trach infections.  He popped another fever.   He's sleeping.  

He IS stable.  Just really sick.  But he's still stable enough that we're on the floor where the doc is committed to getting to the bottom of this and getting him back to baseline.

Honestly, this is a "bounce back."  We never got better.  It's the same thing, and no one likes bounce backs, least of all us.  So there really is no news, but at least you know there's no news.  And it's making it really hard to focus on school, both the things I'm trying to learn and the students I'm supposed to be helping.  

Poor kiddo.  He's just wiped out.

The difference between the difficult and the impossible is that 
the impossible takes a little longer time. 
~Lady Aberdeen

Monday, January 31, 2022

Who Knows??

Tuesday night, waiting for antibiotics to kick in.
This is frustrating.  Aaron was doing sooooo good!  Like AMAZING during October, November and most of December.  We haven't seen oxygen saturations or oxygen needs like these in so many years!  In fact, when he caught a cold towards the end of December, we didn't even blink. There was plenty of wiggle room to increase oxygen and just stay home.  

And then there was the ear infection two weeks ago.  The one that landed him in the ambulance.  Or at least that's what we came up with because we couldn't find anything else.  They hit him with a powerful broad spectrum IV antibiotic and he got a little bit better so we went home.  By the weekend, he was struggling again.  Monday (like 6 days ago) his doctor called in a viral panel that would test for all sorts of viruses including Covid, and infectious disease up at Primary's was put on notice in case it came back positive.  If it was, he was going to be started on monoclonal antibodies.  Because as hard as it is to qualify for that given the shortage, he totally does.  High risk for not doing well?  Yep, that's him!  Severe heart or lung issues?  How about both.  

Anyway, that all came back negative so he saw Dr. K, his ped, on Tuesday.  His ear still looked a bit inflamed and we thought we could see some drainage.  Dr. K attempted to get a sample to culture and put him on a different strong, broad spectrum antibiotic.  (The sample actually ended up being skin cells, so that was a no go.)  It actually looked like the antibiotics were working.  By Wednesday evening, he was definitely better.  Thursday and Friday were pretty great days!  

Saturday, not so much.  Low grade fever.  Saturday night was rough.  Sunday was worse.  Morning was low-grade fever, but afternoon turned up the heat.  Literally.

103.9 at one point, and that was two hours AFTER Tylenol.  Breathing too fast (40-45 breaths per minute).  And just not doing well.  I went to William and told him I wanted to bounce things off of him.  Vitals wise, logically, Aaron needed to be seen.  And frankly, my plan was to call Dr. Knorr in the morning anyway and have him seen there.  But with the higher fever (that didn’t seem to improve at all with Tylenol) and all, I just wasn’t sure.  In fact, I told him that part of my conflict was that unlike other times when I was antsy and anxious, I didn’t feel the need to be rushing in.  So we discussed it, and each of us prayed (Michael, too) about it.  He asked me to pray first, and then Michael and asked what we thought.  Michael wasn’t sure. I was remembering a friend's son had something very similar happen a few years back, but they didn’t go in (because it’s just what we do!!) and then it was too late.  And then Dad prayed as well, asking for direction on what we should do.  When he finished, I looked at him and asked what he thought.  He announced that he was going to go in and give Aaron a blessing and then we were leaving for Primarys.

Now that we’re here, we don’t know what’s going on with him.  They’ve pulled labs, done x-rays, checked ears (they’re kinda “off” but not super bad). Everything looks pretty good, except his white blood count, which is what fights infection.  It’s even a bit higher than when we came in two weeks ago.  So they’re admitting him with the plan to look further and consult with some of the specialists to try to figure it out. 

So we're stumped.  He's doing "better" right now, with both Tylenol and Motrin.  In fact, he just passed below the fever threshold to 100.0.  But then, he also usually runs low so it's still kinda a fever for him anyway.  But I guess we're where we need to be.  They'll be transferring him to the floor soon, and hopefully we'll figure something out.

This kid needs a break.  He needs to be healthy and happy again.  You can see him trying so hard, but he's just not feeling good.  I miss my happy, goofy bug.  

Prayer is the most powerful action against trials,
the most effective medicine against sickness,
and the most valuable gift to someone we care for.
- Unknown

Monday, January 17, 2022

Heading Home

The plan is to head home today.  Really!  

We thought maybe on Saturday, and were pretty certain for Sunday.  Nope.  But today?  Today it's going to happen!

We were all set for yesterday but about 8 in the morning he had a random, significant desat requiring an early breathing treatment.  And he was still asleep.  Now, if it had happened at 8 pm, we would have just shrugged our shoulders and gone with it.  But 8 in the morning is different.  

Most people who need extra support need more while sleeping.  As the body relaxes, it doesn't breathe as well.  But with pulmonary hypertension, it's the opposite.  As the day progresses, the lungs get tighter, more resistant.  It's harder to make that gas exchange.  So we gain ground while sleeping and mornings are his best times.  That didn't bode well for the day.

However, it didn't go that way.  He recovered and maintained.  And slept and slept and slept.  So about 3:30, we asked the doctor for some more labs.  We were worried that we were missing something.  Throughout this whole stay, his heart rate has been 20-30 beats per minute higher than normal, and he was just sleeping SO MUCH!  

But everything came back really good!  So my thought is, he finally wasn't uncomfortable or in pain (stupid ear infection) and his body was finally able to rest!  He did wake up pretty well about 9:30 last night and got ready for an all night party, but took pity on Mom when I turned off the light and was actually pretty quiet most of the time.

So once we get our papers, we'll bust out of here.  It's going to take time.  We call it "hospital time." That's okay.  It's a holiday Monday, and tonight we'll sleep in our own beds.

"There’s nothing half so pleasant as coming home again."
Margaret Elizabeth Sangster

Friday, January 14, 2022

Here We Go Again


On our way in the ambulance.
Thanks, Lone Peak Fire!!
Soooo, here we are, again.  

In truth, it's actually been quite a while.  We spent a day in the ER in September, a few days in the hospital last April, and then the ugly stay back in September of 2020.  That's all (that I'm remembering) for pretty much the past two years.  I've enjoyed not being here.  

So what happened?  I'm not really sure.  No one else is, either.

He was sick over Christmas time.  But the great part is that with the new trach that we put in the beginning of October, we had lots of wiggle room.  Over time, we went from tolerating sats above 77% and oxygen needs of 6-10 liters every day to sats in the mid 80's and oxygen flow of 3-6 liters.  That gave us enough breathing space (like what I did there?) to be able to increase his oxygen to compensate for not feeling well.  Long and short of it is we stayed home, and it wasn't even that hard.

But this week has been a bit rougher.  Not bad, per se, but "something" going on.  By about 6 pm on Thursday, I figured we were coming to the end of what I was going to be able to do at home.  But still,  I kept telling him that it wasn't a good thing to miss the first day of class in a new semester.  I needed him to give me until Friday afternoon and then we could go in.  Um, I guess I forgot who really is in charge.

If you're triggered by medical issues, stop reading here and just know he's doing okay and we'll make it.  Yeah, our evening was that ugly.

We tried bagging, extra breathing treatments, and then changed out the trach.  Often it's helped.  It DID. NOT. GO. WELL!!!  At all!  

After the awful trach change.
It wasn't an "emergency" change.  I got the back-up trach, not the one we have hanging and ready to go in an emergency.  I prepped it.  Michael bagged him while I did this.  Even with bagging, sats weren't "amazing."  Pulled the old one out, put the new one in.  Easy peasy.  Except it didn't work.  Like, he wasn't breathing.  Sats plummeted.  Quickly hit 60% while bagging on 10 liters.  In the meantime, I grabbed the stethoscope and listened to all four lung quadrants.  Nothing!  Asymmetrical tugging and retracting.  Audible crying as he struggled to breathe.  

Yanked the trach, threw the old one back in.  Bagged more, and he started to come up but still struggled.  And there was NOTHING in either trach.  No reason for what happened.  But when we'd stop bagging, he didn't maintain, which meant that I couldn't bring him on my own.  

So we called in the cavalry, you know, the ones in the big red truck.  Actually, by the time we got to the hospital, he was looking pretty good, but then we were still bagging him.  

So once we got here?  X-ray was read as viral pneumonia, but the docs and I all agreed that it pretty much looked like Aaron, cloudy with a chance of junk (although we're still not pulling any junk out).  Viral panel came back negative for everything.  Labs did show higher markers for infection, and he possibly has an ear infection, but we're really not seeing anything else.  By the time morning came, he was back where he belonged at home.  We've got a couple newer docs who don't really know him, and they were ready to push to the floor.  I suggested we needed to wait for that one until we saw what he did today.  They wanted to move him to the regular ventilator instead of the ICU one.  Okay, but keep the ICU one in the room as insurance.  

Hangin' in the ER waiting for a bed.

So now he's on the regular vent, but has also maxed out a few times on his oxygen.  They've been in and out a few times this afternoon.  We've done more breathing treatments.  He's gotten Tylenol because his heart rate is still quite elevated, although no fever.  Long and short, we're not sure what's going on.  It could be the ear infection.   If the antibiotics work, he may feel much better tomorrow.  It could also be another virus.   I mean, they test for about 30 or so, but there are hundreds.  It's not Covid.  It's not Rhino.  It's not the flu (any of the flu varieties).

But he's playing.  He's not as interactive and energetic as he usually is.  He's not well.  But I'm also not worried about where this one is going.  He's whacking at his toys on his Mardi Gras beads strung across the bed.  We'll make it work.  

We got to our room about 4 am and I had class at 8 am.  Thankfully, that one was online.  Nothing like missing the first day of class to make a good impression on your professors.  Fortunately, they're understanding and are willing to work with me.  But I'm exhausted.  I'll try to keep things updated, although most updates may be on his Facebook page.  Anyway, please keep us in your prayers.  

"Be strong because things will get better. It may be stormy now, but it never rains forever."
- Unknown.