Wednesday, November 30, 2022

And Here We Go ... Again

It's been ten days.  Ten whole days.  Except this didn't just come out of the blue.

Aaron started acting pretty tired on Saturday.  Sunday was also lethargic.  He started running a low-grade fever, but nothing else really going on.  

Of course, he also wasn't "going" either.  So Monday morning when he'd popped a higher fever, we tried to "clean him out."  It sorta worked, and it dropped his temp back down too.  

So instead of heading to the hospital, we tried to go to the pediatrician.  It looks like that darn ear drum healed before all the bacteria was taken care of, so they put him on an antibiotic that would cover it.  (Can I just say I love our ped!?!) Anyway, we got it on board and waited for the magic to happen.

And waited.

And waited.  

Yeah, fevers kept going, and kept moving higher.  He slept more.  I tried another clean out.  Tylenol.  Motrin.  Storming rescue med.  Nothing worked.  They didn't even put a dent in his temp.  This morning he was 102.5.  Later it was 103.3.  

So we gave up.  

He's been admitted to the floor (so not the PICU, take our victories where we can) and he's still sleeping.  He didn't even flinch or pull away when they got his IV.  

Viral panels all came back negative, so there's that at least.  X-ray showed a pneumonia in his left lung and a diffuse ileus or, less likely, a possible bowel obstruction.  Essentially, the muscles that work to move things through are on strike.  Dr said that can happen with a lower lobe pneumonia.  This kid's belly?  Yeah, it's big.  Like everyone who saw him was taken aback.  

So it's IV antibiotics for the lungs and IV fluids to keep him hydrated while we give his gut a rest.  

But he's not septic, which was my biggest worry, and we'll get through this.  I'm just hoping that Friday morning's commute isn't as ugly as yesterday's.  I have class and we're starting final presentations.  Almost done with the semester.  Fingers and toes crossed that I can make it.  

And here's hoping that this stay is straightforward, or at least as straightforward as any of his stays ever are.  

I would make good health catching, instead of disease. 
~Robert G. Ingersoll

Sunday, November 20, 2022

Third Time's the Charm

Waiting on discharge papers and one more talk with ENT.

That's all and we're outta here!

He's not "all better" but close enough. 

Still fighting a really nasty ear infection and coming back from e. coli, but we can (probably) handle that at home. 

Yay for our own beds tonight!

Saturday, November 19, 2022

Best Laid Plans, and All That Jazz...

You know that saying, "Man plans and God laughs"?


I think He's enjoying this joke.  

Not that He thinks Aaron is a joke, but that I keep expecting things to go according to the way I think they should.

Yes, we're still here.

No, we're not quite sure how much longer.

So when his belly became a bully again, that put things on hold for discharge.  Instead, GI was willing to do both a colonoscopy and endoscopy to try to figure it out.  That did entail a "clean-out" (so much fun) and then general anesthesia. The good news is there wasn't anything remarkable in those studies.  That's also the bad news.  Sigh...

Funny story about those studies (at least I found it amusing):

To get to the CPC (Children's Procedure Center) we had to go down the main hall on the main floor of the hospital.  You know, the one that EVERYONE uses if they come to the hospital for ANYTHING.  Well, this kid does not travel light under the best of circumstances.  He has to have a nurse, respiratory therapist (RT) and generally a tech as well.  This day we also had a nurse and RT training as well.  Plus he's in this huge Posy bed (green tent-like thing), has his ventilator, IV pole, and the transport pole that has a suction bag and emergency bag on it.  It's seriously a three-ring circus.  Five adults, plus me, plus all this "stuff" working our way down the hallway.  

The looks on people's faces....  Maybe you had to be there.  I found it borderline hilarious.  But hey, that's what we do! 

And Aaron?  He was pretty oblivious.  Just hanging out, whacking at his toys.  Moving right along.


So we started a new formula, an elemental formula.  That means the proteins and other nutritional aspects are mostly already broken down so it's easier to digest.  Should work, right?  Maybe...  

Started that Thursday night slowly, increased over yesterday, and are now where he should be for full feeds.  Home today, right?  

Um, maybe...

See, last night he started running a fever, and it's responding to Tylenol and not Clonidine.  Clonidine response would mean he was storming and we'd go home anyway.  It's just what we do now.  Tylenol means he's probably got something else going on.  And as much as I am grateful for this hospital and all they do for us, I really, REALLY don't want to go home and then come back.

The only time I've ever cried in the ER was when we came back less than 24 hours after discharge.  Bounce backs are devastating: emotionally, physically, mentally.  

In addition, he's also got more diarrhea.  It could be related to his clean-out for the colonoscopy.  It could be a reaction to his new formula.  It could also be a combination of those two AND all the GI meds he's been on because he wasn't "going" before.  I just love puzzles (actually I hate them).  

Plus, that nasty ear of his grew out MRSA, so is it responding to the new antibiotic, or not, or....  Who knows.  So ENT is going to come by.  

And we've pulled another viral panel.  The good news is that when he came in ten days ago, his viral panel was negative, so if anything comes back positive, we'll know it is a new infection.  

So home?  

Yeah, who knows.  Someday, right?

You must have long-range goals to keep you from being frustrated by short-range failures.
~Charles C. Noble

Sunday, November 13, 2022

Tomorrow? Or a Different Tomorrow?

Home didn't happen today.  I thought we were pretty set for it.  Oxygen good, ears and eyes checked out.  All that stuff.

Except the GI stuff.  Yeah, that.

Mid-afternoon it reared its ugly head.  I was glad (sorta) that they could see it.  He started pulling at his belly, then fevering, then crying.  And more crying.  Clonidine helped briefly, and then didn't.  We did get that stool sample that GI wanted!  Could have provided enough for the whole unit! (TMI?)

And ended up back on 15 liters of the good stuff.  (You know, it IS his drug of choice.) 

We finally had to give Ativan and stop feeding him to kick it.  So here we are.  He's getting Pedialyte continuously, the team has advocated hard for him to be seen tomorrow by GI, and we'll go from there.  I'm hoping that GI will be willing to go ahead and do his endoscopy, hence the holding of food until after they see him.  We've done the rest.  He's been on the Carafate they prescribed to help calm the irritation.  We've done the stool test although don't have any results back yet.  And what he deals with is just wrong!

I mean, he's an innocent kid.  They don't come more innocent or happy (except when he's dealing with significant pain).  And this has been going on since the end of August.  There has to be answers!  

With the Ativan, he slept pretty much all night and most of the day.  It's 5 pm and he's just waking up and starting to play.  I may not get sleep tonight, but if he's happy, that's okay.  I got a nap.  

Please pray that this little guy will get some relief.  He needs it.  

We need to figure out how to support him.  He is only tolerating the most bland of diet and even with that has lost ten pounds in nine months.  Right now, that's okay, but it can't continue on that trajectory. 

So the long and short is, we're still here, still needing care. 

Home will come.  

It always does.

But for now, he's where he needs to be.  

“The only way around is through.” 
Robert Frost

Saturday, November 12, 2022

Doing Better, Still Here

I haven't written because it seems there's not too much to say.  

When we got to the hospital, his x-ray was hazier than it has been in the past, but his other labs really didn't show much in the way of anything.  His white blood count was slightly elevated, but only slightly.  That can happen with stress.  Not oxygenating well is something that the body is not too fond of.  Stress anyone? (Good thing they're not measuring mine, right?)

Anyway, the thought is that his pulmonary hypertension has reared its ugly head again.  And by "again" I mean it's worse.  It's not like it's going to go away.  They did an echo which didn't show really any changes, so that's good.  PH can fluctuate, and it can cause a pulmonary hypertensive crisis.  Probably what we were dealing with on Tuesday.

He spent Tuesday night through yesterday on the hospital vent with anywhere from 50-100% oxygen bled through.  Yesterday he was needing about 50% so they attempted to jump to his home vent and it really worked well!  Thank heavens for the new vent.  The old one wouldn't had worked out.  But most of the time yesterday he was on only 2-3 liters of oxygen, you know, where we sit at home normally.  

He did have an incident in the early morning hours which brought in RT, rescue meds, and about 12 liters of the good stuff.  

So we're hoping for discharge tomorrow, fingers crossed.

In the meantime, he is enjoying seeing all his medical friends up here.  Grateful for blessings, for the time to build these relationships.  

“Living in the moment means letting go of the past and not waiting for the future.
 It means living your life consciously, aware that each moment you breathe is a gift.”
—Oprah Winfrey

Tuesday, November 8, 2022

So Much For Doing Better

Welllll, yeah.

That shoe dropped.

Aaron decided that breathing (okay, oxygenating) was for the birds tonight.  Really don't know what's going on yet, but he'd had a couple desats over the last couple days, and some other really good times.  He'd bounce back pretty quick from the desats so I didn't give them much thought.

Then after school, his nurse suctioned out a pretty big reddish brown plug.  

About 6-ish he started dropping.  

And his heart rate was going up.

And I wasn't happy.  

We started turned up the oxygen.

We gave albuterol.

We started bagging him.  And gave more albuterol.

And he was still not coming up.

I was even more not happy.  

But you know, in the way that special needs families do it, I also ate dinner, put things together, printed out a meds sheet and history paper (and left them on the printer).  

And then I called 911.  

What's going on?  We don't know yet.  They didn't even try the regular vent.  Once the RT got him bagged up, she put him straight on the ICU vent and at some point that's where we'll go.   

So that's the story for now.  They're getting x-rays and labs, and he's settling down.  

Just pray for us, please.

It is not a case we are treating; it is a living, palpitating, alas, too often suffering fellow creature. 
~John Brown

Sunday, November 6, 2022

Looking Back, Looking Forward

WARNING:  There may be some triggering parts to this post.  This is a therapy-type post for me and I detail our attempt to extubate 12 years ago that led to him getting his trach.  If it will cause problems, please just know he's doing amazingly well, better that we've seen since before his trach.  

Twelve years ago today was a turning point in our lives.

Aaron had his g-tube/nissen surgery the day before and while that had gone well (mostly, a couple wrinkles) he had been a very difficult intubation and Dr. ENT was concerned about being able to be extubated successfully (meaning pull the breathing tube out and still breathe).   He came in that afternoon and we tried.

Aaron really tried.  But in the less than 10 minutes from when they pulled the tube to when it was back in, he failed spectacularly.   And that time also included bagging him and pushing paralytics.  We don't know what his CO2 was because the machine stops measuring at 130 and that's what it said for him..  Normal range is 24-37.   CO2 influences our pH.  Our bodies are pretty picky.  They like 7.37-7.43.  His was 6.9.  Cell death occurs at 6.8, and I was told (much later) that they often don't get people back from a 6.9.  

Like I said, he failed spectacularly. 

I discovered that Dr. ENT wasn't sure they would be able to reintubate, so he was prepared to trach him right there at the bedside, but we didn't have to, and we scheduled trach surgery then and there.  He wasn't pushing it.  It was totally our decision.  We sat down after Aaron was stable again and I said, "we need a trach." 

He replied, "if you want to keep him, you need a trach."

And that was that.

My parents were teaching in China at the time and as I spoke with them, my dad gently asked, "will you ever be ready to let him go?"

I thought, and said, "I don't think so."

He nodded and gently said, "that's good to know."

But that brings us to today, or this week, or whatever.  The present day.

Aaron had surgery nine days ago to fix a hole between an artery and a vein in his groin area in hopes that it could relieve some of the load on his heart.  I can not believe the difference!

Prior to surgery, in fact for the past few years, we've been accepting sats of 77% or greater.  That one took me a while to wrap my brain around.  We were running 6-8 liters of oxygen just to maintain that.  With the switch to the new vent the end of July, it got a lot better.  We were usually on 2-4 liters and hanging a little higher in the low to mid 80's on his sats.  And his feet were often 10-15 points lower than his hands because of that hole, the pressures in his heart, and the fact that we had widened the PDA (hole between his aorta and pulmonary artery) to relieve some of that pressure. 

We haven't used this machine since
before the trach.
Um, not now.

His hands and feet are pretty close in sats now, 0-3 points apart.  He's satting high 80's to low 90's, and sometimes mid 90's.  And he's using 1-2 liters!!!  For a while on Monday, he was actually on 3/4 of a liter!  

We have not seen numbers like that since before his trach!!

This kid!!!

I have to be honest, I'm almost afraid.  I've learned that often the other shoe is just waiting to drop and I struggle to relax.  

But I've also learned to take each moment and live in it and count it for good. 

So right now, that's what I'm doing.  I'm grateful for a cardiologist that pushed hard to make this happen, talking to different doctors and specialties to ensure we found the best path forward.  I'm grateful for nurses that take such amazing care of him (and the rest of us).  And I'm grateful for the past 12+ years we've had with this wonderful, silly, crazy boy of ours.  

“Be present in all things and thankful for all things.”
― Maya Angelou

Tuesday, November 1, 2022

We're Home!


So Saturday we spent most of the day trying to work this kid down from 8-10 liters.  I mean, seriously!    Was it pain?  I mean, he did just get his leg sliced open.  Nope, didn't seem to be.  Was it his gut?  Maybe??  Something else?


Evening breathing treatments the RT asked if we ever used cough assist.  For those who don't know, it blows your lungs up big and then sucks all the air out.  You know, like coughing.  

We have used it and even have one at home but he hates it (go figure) and it doesn't usually make much difference.  No one really thought it would because he lungs sounded amazing, but hey, why not try?

Um, yeah.  That was it.  She pulled out three pretty big, nasty, sticky and old plugs out and voila!  His sats shot up, we turned that O2 down and life was great!  

He stayed on three to four liters all night so Sunday we were outta there.

It did take several hours to get going, but that was mostly because of a friend I ran into.  I went to church and she and her family were there.  They actually serve up there so I expected to see them.  We got to talking after, and talking, and talking.  And frankly, if I didn't actually need to get us home, we might still be talking.  

Someone pointed out to me recently that this life can be isolating and lonely.  She wasn't wrong.  Being a parent of a medically fragile child changes you in fundamental ways.  It's harder to connect, but that connection is so needed, maybe even more than before.  

The flip side is that while that connection is crucial, medically fragile means you are terribly busy just keeping that kiddo alive and you don't get out much, thus making relationships that much harder to nurture.  

I'm so grateful for the time we had on Sunday.  It fed my soul.  Thank God for friends.  

"If I had to sum up Friendship in one word, it would be Comfort." 
~Terri Guillemets