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

Smiles!

Look!  

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!

SMILES!!

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

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.

Sorry.

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.  

Yesterday.

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

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

Storming?

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. 

Storms.

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

Inchstones

 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

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