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.

Smarty Pants or Smart Aleck?

Sooo my kid.  Yeah...

Last week was the wax museum at school.  For the third year in a row, Aaron has chosen to represent a strong female character.  I'm kinda proud, and kinda hoping it's because of the strong women in his life.  I keep trying to live up to what he needs.

First year he chose Amelia Earhart, second was Helen Keller.  This year was Eleanor Roosevelt.  

Now, every child at his school is severely handicapped.  It's the prime requirement for enrollment there.  Federal law requires a child be educated in the least restrictive environment (LRE) possible, and this is pretty much as restricted as possible without being confined to home/hospital education.  In short, none of these kids are at "grade level" so to speak.  (In spite of the fact that I got an invitation to test my sixth grader for the ALL program, Advanced Learning Lab, the honors program in the district.  Whatever.)

But at the same time, they are learning and being taught and challenged.  So Aaron was asked to write

"Eleanor Roosevelt" on his computer for the report.  Here's what he did!  I couldn't believe it.  My severely handicapped child, the one that would only progress to a six to nine month level, if that, identified the first two letters in Eleanor and the first letter of Roosevelt.  It's kinda on par with a kindergarten or maybe first grade level.  A little beyond the average six to nine month old.  

Now for the second part.  He IS in sixth grade.  And sixth graders are notorious for not always wanting to work.  On Wednesday they were trying to get him to finish up his report.  He didn't have enough information.  

"Do you want to put this in?"

"No."

"Do you want to look at this?"

"No."

"Do you want to try this?"

"No."

"Are you going to say no to everything today?"

"Yes."

Oh, boy...  There's obviously more going on in that brain than people give him credit for.  I've always said one of the things that makes Aaron a little easier to parent than my typical kids is that he always does his work.  I may have to rethink that one...

His reaction immediately
after his vaccine. I think
he was relieved it was so
much easier than an IV!

Anyway, in other news, Aaron has now had both Covid shots, for which I am incredibly grateful!  I was a little concerned with possible side effects from the second so we scheduled it for a Friday afternoon so I could watch him over the weekend.  He was a bit more tired and needed a tiny bit more support than usual, but overall, if I hadn't been looking for something, I'm not sure I would have even noticed.  

This weekend he does seem to be starting to fight something.  He's needing quite a bit more support, although still within what we can provide at home.  He's more tired, a bit more junky, and his temp is a bit higher although not technically a fever.  (100.4 is the fever threshold.)  We're having a talk right now about how good he's been all semester, but just because it's coming to an end doesn't mean he has to take a "vacation" trip up north.  We'll have to watch and see, but I'm hopeful that we'll weather this at home.  Still soooooo grateful that we have the new trachs and they're helping him breathe so much better.  

Be a student of life and a lifelong student. 

~Terri Guillemets

I Am Enough

 It's been a long time.  Two months.  How did I go two months without writing? 

Actually, I think I know how I did it.  I have been writing, a lot!!  But it's been for classes and not on here.  As a side note I mentioned that on the 16th, I was done with what I needed to do for one class until after Thanksgiving.  Michael said he wished he had a class like that.  I then informed him I'd written four papers in 36 hours for that class, and he retorted that he didn't want a class like that.

But anyway, here I am. 

It took four weeks to get Aaron's new trachs in.  Fortunately, the special needs world looks out for its own.  A mom got in touch with me and asked what size and length we were looking for and sent me one within a few days.  Can I say, I did NOT expect what came next.

Aaron has not been doing great.  He's been declining.  It's slow, but it's real.  We keep hearing "disease progression."  We kept seeing disease progression.  Higher oxygen needs, lower saturations.  And then, with the new trach, things changed.  We started seeing higher sats, lower oxygen.  The opposite of what's been happening for months and even years!  His digestive system was working better.  He was happier, more alert!  Could it be that what he needed was a longer trach for oxygenation?  Kinda looks that way!

The last several days have been a bit harder.  I think he's fighting off something, but he's still doing pretty well.  We're still below 8 liters, instead of pushing 10 plus.  His sats are generally in the low to mid 80's instead of high 70's.  I said he hadn't been doing as well, right?  We're now tolerating oxygen saturations down to 77.  Yeah, 77%.  Kinda rough to wrap your mind around, so I generally don't.  

In the meantime, we've had Halloween, cutest Dracula ever, and he got a new wheelchair.  This is kinda awesome, and intimidating, too.  I mean, I learned to drive way too many years ago to put it down here, but it was like learning all over again.  This chair is a power chair, and also has the ability to raise and lower so he can be up at eye level, instead of everyone looking down at him.   It also turns in place, which is a bit hard to get used to.  He has his own controller, but so far, he doesn't get a whole lot of access to it.  He can do it outside, or at school in the gym or hallway, but you know, in the interest of not putting holes in walls and running over people, we kinda control it the rest of the time.  

He also got his first Covid vaccine.  I cannot say how grateful I am for this!!  He gets his second one this next Friday.  It is such a blessing to be able to help protect him this way.  He still won't be going out much until at least spring.  The viral season is already exploding.  The last count I heard from Primary's was between 245 and 249 patients.  It's only a 260 bed hospital and that includes units like NICU, the ER, and behavioral health.  It's busting at the seams.  Right now, it's sorta okay because they can do something called load leveling, where they send patients to other hospitals as well.  Kids that are older or less complex that don't need quite the level of specialized pediatric care.  But guess what happens if the other hospitals get too full?  

Anyone remember a few weeks ago when Idaho enacted crisis care standards?  Know what that means?  For us, that means Aaron does not get admitted.  He gets turned away.  Kinda see why I'm so vigilant about masking and vaccines and such?  'Cause you know what, you just don't know exactly how it's going to affect you.  You don't know if it's going to land you in one of those oh so sought after hospital beds.  And you don't know what it's like watching someone turn those nasty colors as they fight to breathe.  I do.  It's ugly.  And that's why I'm so insistent that everyone around Aaron take precautions.  And why he doesn't go to church, and we're very careful who we see in close quarters.  It's just not worth the risk.  

But anyway, off the soap box.  

I've been pretty blah lately.  I've struggled just to feel.  Sometimes that protects me, and sometimes it just hurts.  We lost two more trisomy kiddos last week.  Older kids, one that I know personally, in real life.  It's a gut punch. 

But I thought, once I get Christmas things out, that'll do it.  Nope.  When I get Andrew's package put together?  Not really (but I am excited about his reactions).  I've tried to be easy on myself.  We didn't do quite as much with the decorations this year.  But still...

And then tonight I got my old Christmas songbook out.  

Yeah, that's what I've been missing.  For the second year, we haven't had our community choir that I always sing in.  For me, Christmas music began with rehearsals in October.  We sang on Sunday nights and the songs would play in my mind all week.  It came to a climax the second Sunday in December, and that's when Christmas really started.  

But as I sat at the piano, I started feeling again.  And it was poignant, and soul-filling.  I went through the songs I grew up playing:  "Chestnuts Roasting on an Open Fire," "Silver and Gold," "I'll be Home for Christmas," and so on.  Playing them, singing some, hitting sour notes because it's been waaaaaay too long.  And then I came to "The Little Drummer Boy."  

I don't know, that's always been a favorite of mine.  Sad little boy with nothing to offer, home gone, just his drum surrounded by all sorts of magnificent gifts.  But he plays it, plays his best for the Christ child.  And the Baby smiles at him.  What he has to offer is enough.  

What I have to offer is enough, too.  What I can do, what I can't do, what I want to do, it is enough for Him.  I don't have to do everything, be everything, know everything.  It is enough.

In class, we're often reminded of the importance of self-care.  I think I've been neglecting that aspect of mine for too long.  I need my piano, my music, the grounding.  I'm glad I found it again tonight.  I'm glad I found myself again.  I am enough.  

Then he smiled at me
Pa rum pum pum pum
Me and my drum