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

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

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

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.