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

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

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

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