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.