Christmas 2022

We're here, we're home. 

Home for the holidays (mostly).

I feel like I missed December, pretty much did.  

We put up the tree the day after Thanksgiving (of course!) and were admitted the next Wednesday, only five days later.

Came home on the 21st, so just 4 days before Christmas. 

Yep, missed most of that.  Missed making cinnamon roll bread for teachers and neighbors.  Missed the nightly advent stories and songs.  Missed the music and church services. 

But we didn't miss Aaron.  He's here.  Another Christmas with him here with us.  

As I walked the halls at Primary's, I looked around at those who were also there. The ones clinging to hope, the ones who were trying to find hope.  And the ones for whom hope was fading. 

It's a bittersweet experience being at the hospital during the holidays.  Staff know it's hard and they try to empathize.  Community rallies and donations literally pour in:  stuffed animals, blankets, toys, meals.  But still, you're there, where you'd rather not be.  At the same time, you're there with your child, who is still living, when many are not. 

I sat with a family as they lost a child.  My own frustrations and worries faded as I held Mom. I don't think I said much.  What could be said? Nothing would make it better.  My own heart ached so much for them.  

Aaron came home with me. Their child did not go home with them. 

Christmas here was a bit different.  We got up and had breakfast, and then Jonny and Avanlee called with Elend from Germany where they were enjoying Christmas. After that, it was time for those going to church to get ready.  When they got home, Andrew called from Arizona.  I treasure these video connections.  It makes missing them here a bit easier.  Then, finally, we got to the presents.  In the past, breakfast has promptly been followed by presents, and waiting until 7:00 has been torture for me.  My husband kept trying to figure out what had been done with his wife and who I was in her place.  But this year, this year I wanted to savor the experiences, and it was beautiful.  Even sweet three-year-old Linnaea was so incredibly patient and engaged, more so than I think I was when I was ten times her age.

As I've contemplated Christmas this year, I'm drawn back to the first Christmas.  There weren't a lot of lights and clamor and presents.  There certainly weren't treats and parties. I think of Mary holding sweet Jesus.  She knew, and yet she didn't know.  She couldn't have.  He was still with her, tiny, helpless, in her arms.  She was warned by Simeon that it would be as if a sword through her own soul.  Yet, she didn't falter. She loved and she taught, protected and served. Her gentle soul sought God's will for His son.  

So I guess, in the true spirit of Christmas, we didn't miss anything. We have family and love and everything we need. Aaron is (very slowly) starting to improve.  He's still tired, oh so very tired. His feedings are progressing much slower than I'd like them to. He's still fevering, but it's low grade (100.4-100.9).  He has an eye appointment tomorrow morning to check on the infection that has plagued him for several months now but flared even more during our most recent stay.  It's hard for him right now. I am hopeful that things will improve and his spunky spirit will return. 

But in the end, regardless, he is ours. Our son. And we've had another year where Tiny Tim's crutch is still needed, still used, still loved.  God bless us, every one. 

"...It might be pleasant to them to remember upon Christmas Day, 

who made lame beggars walk, and blind men see." 

— Bob Cratchit

Home Again, Home Again, Jiggity Jig

Okay, maybe not as fast as jiggity jig.

In fact, we've been here three weeks today, total of 22 days, a tie for our longest stay.

BUT we're heading home.  Need one final consult with ENT and an oxygen tank and we'll be gone.

So grateful to be home for Christmas, just to be home regardless of the season.  

He is still so very tired.  I'm hoping we see him perk up once he's back with family.  He still needs continuous feeds. I'll work him back to baseline at home.  But he no longer needs IV antibiotics or fluids. He's way down on his oxygen and his vitals haven't looked this good for WEEKS!  Like just after his last surgery where we fixed the hole between his femoral vein and artery.  No fever for the past 24+ hours. 

It's time.

Yay for home, for family, for Christmas.  

I'm so grateful to be taking him home.  Stays like this make a mama's heart and head go places they shouldn't.  We are so thankful for his continued presence with us this side of heaven.  It's a gift I don't think I will ever take for granted.  A precious gift denied to many others.  I don't know why some stay and some don't.  They are no less loved and cared for.  And missed.

“What is Christmas? It is tenderness for the past, 

courage for the present, hope for the future.” 

– Agnes M. Pahro

Stutter Steps

You know that movie, Groundhog Day?  Where the day just keeps starting over again?  Bill Murray can't quite figure out how to get out of the loop?  Yeah....

I did put up a Facebook post a couple days ago but honestly, recapping that wouldn't give any new info.  I mean, Groundhog Day. 

We start his feeds slow, work our way up sloooowly, and then hit a roadblock.  Usually it's a spiking fever, higher heart rate, lower sats, or a combination of the three.  Plus his girth goes up substantially. Yeah, they measure his tummy pretty often.  So then we have to stop giving him anything through his g-tube.  

Over and over and over again.

What we know: his white blood count (infection fighting blood cells) trend up when he struggles. He fevers, sometimes as high as 104.7 (YIKES!). He gets more tired. His red blood cells, his hemoglobin (part of the red blood cells that carries oxygen) and hematocrit (percentage of red blood cells available) have all been trending downward.  Interesting and maybe pertinent, his thyroid levels are actually high instead of low or normal like usual.  And he's not tolerating food in his belly/intestines/gut/whatever.

So after being pretty sure we've knocked out whatever bad bacteria there is with two weeks of big gun IV antibiotics, and trying most everything else, he's now getting blood.  His cardio really likes all those red blood cell markers to not just be in the normal range, but at the upper end because of his heart issues.  Somewhat of concern is that vitals wise, he's looked pretty good so we didn't want to upset the hemodynamic balance.  The conclusion we all reached together is that at this point, the possible benefit outweighs the risks.  

So here's hoping that bag is a bunch of red pixie dust running into his veins.  He's responded well to it in the past.  And right now he's already looking a little more pink.  

Maybe we've found our magic ticket out of our loop?

When the world says, "Give up," Hope whispers, "Try it one more time." 

~Author unknown

Still Got Work To Do

Still here. 

Still trying.

Still struggling a bit.

He is reaching his 24 hour feeding goal, but we're just getting there.  It's kinda been fits and starts.  Next will be to try to condense it down to daytime feeding and then individual meals. 

He finished his week of IV antibiotics on Wednesday.  Thursday his body, or at least the bacteria, said, "wait, I'm not done.  I'm still here and kicking."

We discovered that on Thursday evening, night, and early Friday morning.  

You know how when you do (I don't do) cardio exercises the goal is to get your heart rate up?  Um, not supposed to happen when sleeping.  He was at 120's in the evening, progressed to about 150 beats per minute at midnight, and then at 1:30 am he decided to go all out and hit 170.  Asleep.  Not so great.

So once again, a rapid responses was sent out.  Fortunately this time, the team came up, evaluated him, pulled labs and did x-rays, and decided he didn't need to make the trek downstairs.  They did restart IV antibiotics again and we pulled more cultures.

So now his ear, his eye, and probably his trachea are all infected and they figure he needs another week.  We even did a CT scan to get a really good look at his ears, and yep, still got "stuff" in there.  Our new discharge goal is for Saturday.  

In the meantime, he's tired, so tired.  Labs also showed that his hemoglobin and hematocrit are both pretty low.  They were on the low end of normal when we were admitted but they've dropped quite a bit since then.  So we're having the discussion about whether to start iron or transfuse, or what.  Hemodynamically (blood volume, profusion, blood pressures, oxygenation) he's looking pretty good so there's concern about upsetting the apple cart by putting more volume in.  But at the same time, his bone marrow isn't currently putting out the cells it's supposed to be.  

Which, incidentally, can influence the gut response.  Remember the old gospel song, "Dem Bones"?  Yeah, it's all interconnected.  Ear, eye, and trachea.  Blood, oxygen levels and everything.  Sigh...

So anyway, that's where we are.   

On another note, I'm done with finals and have a few more hours I need to put in at my internship this week.  Then I have a break before next semester comes at me.  Last one!  

In the meantime, we'll just keep on working on getting things sorted out. 

"Every noble work is at first impossible."

Thomas Carlyle

Movin' On Up

He got out of the PICU today.

He's spent most of his time since Saturday afternoon asleep.  But it's been a good sleep, a healing sleep.  Yesterday his heart rate and respiratory rates were still a bit high, but today they're down where they should be.  

His gut continues to move along the way it should, and tonight his girth measured about 64 cm.  That's down from the 77 cm at the worst of things.  Yeah, he was that big and swollen.

So tomorrow we'll start introducing formula again, very slowly. 

He's still got a ways to go before we get out of h
ere.  Right now the thinking is that he needs to be back to full feeds and hydration for a couple days, to make sure he keeps on the right path, before we make it home.  

So here's to boring days, full of not much and just working on feeling better.

Fingers crossed....  

It's no coincidence that four of the six letters in health are "heal." 

~Terri Guillemets

Silent Night, Peaceful Night

Quiet.  

Rest.

Peace.

Yesterday was rough again.  Lots of pain, fevers, agitation.  Then another big stool.

And he slept.  And slept.  And didn't wake until after 2 pm.

He's not grimacing, or crying, or trying to get comfortable.

It was more like a "totally exhausted, I finally don't hurt, my body needs to heal" sleep.

Not quite a silent night.  We did have vitals checks and meds to do.  

But yes, a very peaceful night.

..sleep, Heaven's gift to all its creatures... 

~Charles Dickens 

Activity at 2 AM is Never Good.

What is it with 2 am?  This isn't first time I've woke up to a full room at 2 am.

I don't know what happened.  

The team doesn't really either.

But I woke up with all the lights on and a room full of people. 

Aaron had dropped his sats precipitously.  

Like into the 50's. 

No bueno.

And he wasn't too interested in recovering.

So when I woke, the whole rapid response team was there.  Apparently he'd dropped, they were bagging.  It wasn't working.  Like he was on 100% oxygen through the bag and he really didn't want to come out of the low 60's.  

I don't know how many people were in the room, but it was a lot!  They didn't want to try to move him until the attending was also present.  I don't think they usually come up for rapid responses, but she came, too.  They gave Ativan through his IV with epinephrine on standby in case his blood pressures tanked.  I was asked about compressions, and responded automatically that he was "full code."  I wasn't processing, and didn't want to either.  

We made it downstairs, and they moved fast once they started moving the bed.  In the middle of this whole mess, he created a mess in his diaper (and everywhere else, TMI?).  Honestly, it was his first stool on his own for a week, and the first one he'd had here.

Prior to all of this going down, we'd tried to run Pedialyte really slow (10ml/hr) overnight Thursday to Friday to wake up his bowels, but he didn't like that so it was stopped Friday morning.  He usually loves vest treatment, but didn't tolerate it at all during the day, so that was stopped after just a few minutes each time and then put on hold after two failures.  

This poor kid.  His belly really HURTS!!  He's had another BM today, but he's spiking another fever and he's crying most of the time.  

He has come down on his oxygen needs.  He was on 100% on the ICU vent when he was finally stabilized, and now he's on 65%.  That's progress.  But he's still requiring IV Tylenol and Ativan to be comfortable.

Friday afternoon, big brother Michael was
up here and put his BYU hat on this Utes fan. 
Aaron wasn't quite sure he approved.

Yesterday in my advanced therapy class, we had to conduct a (short) clinical session in front of the class.  Because you have to have a client, we were each other's guinea pigs.  My partner asked me if we could keep things "real."  In other words, not role play.  She did with her issues and I think it went okay.  Between her request and some comments that had been made in Addictions about honesty and trust, I decided to be open about what I'm dealing with.  I think I've felt the need to protect others.  I feel like I'm too scary, this is too hard, and I don't want to burden others.  In Addictions, we talked about how the client has to be able to trust the therapist to deal with the horrific things that they deal with in order to heal.  So, yeah...  

Anyway, after unloading on K, she asked me what I wanted to do with the (very few) minutes we had left.  Did I want to work on come skills to get through things, or explore the emotions? I quipped that the skills were probably easier, but the emotions were more needed, so she walked me through some somatic exercises.  

We talked about what I was feeling, where it was, how it felt, looked, and just let it "be."  This big black knobby mass that sits in my own chest, on my lungs.  And then she asked what it was saying to me.  As I pondered that, I started crying (I'm tearing up just remembering).  I've said this to so many, but I try to stay busy and push it away myself.

"It's okay to not be okay."  

That's it.  It's okay to not be okay.  And I sat with it.  

I needed this so badly, and it was before all the crap hit the fan last night.  

Linnaea sat on my lap for my livestream class yesterday, waving at all my other classmates on the screen.  

"Those are all your friends, Gramma!"  

Yes, Linnaea, they are my friends.  And I am so grateful for them.  They help me know myself and give me strength.  

One's friends are that part of the human race with which one can be human. 

~George Santayana

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

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!

Best Laid Plans, and All That Jazz...

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

Yeah.

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

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

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

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

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

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?

Bingo!

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

Surgery Day (Yesterday)

Aaron's right femoral AV fistula was repaired yesterday. 

In English: there was a hole between his artery and vein in his right groin area.  Not a great thing.  When the surgeon got in there, he said it was the size of a pencil eraser.  On a kiddo Aaron's size, that's huge!  But no more!  So all that lovely oxygenated blood that was pulling a U-turn and going back to the heart instead of delivering precious oxygen to the cells in his leg has now been put on notice.  The U-turn has been removed.  

Already his right foot is much warmer than I remember it being.  And we're hoping that it improves his heart health, or at least slows the progression of his heart disease.  Poor muscle was totally being overworked.  It still is, just hopefully not as much.  

We were hoping to go home today.  We actually thought we would.  And the "we" is apparently the doctors and I.  When I told William it wouldn't be happening, he laughed and said, "I never thought you'd be home today."  Oh well...

But this kid is a champ.  He's rocking out, playing, watching TV.  But that darn asthma has decided it wants to play, too.  He spent most of the night on ten liters.  That wouldn't be too far off except that since we switched ventilators he usually needs two to four liters.  Sigh...

Gotta love this kid's games.

In other news, the new Primary Children's campus in Lehi is really coming along!  Some of us got to take a tour of it on Thursday and it was AMAZING!!  There is a complete behavioral health unit, which means that among other things, when a child needs both medical and behavioral health care, it can happen there.  Right now, inpatient behavioral health does not have the option of supporting medical complexity, too.  It will be quite a bit smaller than the original campus, about a third of the size but it will have a PICU, a NICU, regular floor, ORs, emergency department, and observational rooms.  Plus there's a full wing with clinical offices as well.  

Going through and actually seeing what we spent so much time working to design was thrilling!  Still a ways out from opening, it will be a great blessing to so many children and families.  

School for me is going well, but man, it's HARD!!  Everyone says the third semester is the hardest and I believe them.  There is just so much to digest and figure out.  There's a lot of self-introspection and work between my ears going on.  Plus we're getting ready for our capstone projects and that's got me totally stressed.  But that's okay.  I'm also learning to set boundaries, including on my own thought processes and to take care of myself.  

When we first started and they were talking about self-care, I was like, yeah, that's totally a good idea.  Then we were asked what we were doing for self-care.  That one threw me.  I was like, I have no idea.  I have no time.  Self-care?  You've got to be kidding.  

But I'm learning.  It's deciding that good enough is just that:  good enough.  It's lighting a candle while studying and listening to calming music.  It's deciding that it's okay to not do some things, and it's also okay to say I can't deal with mess and clutter and get it cleaned up instead of doing something else.  Self-care is acknowledging that my own mental, physical, emotional and spiritual health is important and I need to be the one to care for it.  

Sometimes (although perhaps not for a while now, it's cold) it's sitting outside in the sun and just listening to the breeze and neighbor kids playing.   

Sometimes it's writing.  

Recently it was suggested that self-care is scheduled, sacred time.  I've been believing that I don't have time to write, or that what I want to write won't make sense.  That needs to not be a problem for me.  If my writing is my self-care, it doesn't matter if others understand.  

I've written therapy-type posts before.  Not therapy for others, posts that get the thoughts and whatever out of my own brain.  Therapy for me.  Maybe there will be more of those.  I need to schedule time for this, for me.  I think everyone in my life will benefit, but again, this is mostly for me.  And that's okay.  

"Self-care is obtaining and maintaining your own well-being."

Dr. Elijah Nielson

GI Issues and The Plague (Covid): What a Month

It's been an interesting month around here.

Yeah, "interesting" is probably a good word for it.

When last we left our hero, he hurt, he hurt a lot.  And the cycle continued.  We would have three to four pretty good days, an excellent day, and then hell would break loose again.  

He would start by grabbing at his belly, pulling at the g-tube.  Then writhing and grimacing.  Followed by crying, screaming, fevers and often a river of brown stuff from his bum.  We would have to stop his food, do pedialyte for 24 hours, and then start again.  

Consulting with his special needs ped, we put him on a very, very bland diet.  Think BRATT.  Tried that for a week and it went well!  So I reintroduced something.  I can't even remember what.  Nope, didn't work.  

So now he gets bone broth, white rice (brown caused issues), a bit of tofu, banana, white potato, and some oil, salt, and blackstrap molasses.  And it seems to not hurt.  But at the same time, he's still experiencing diarrhea and has been for about six weeks.  

The good news is he no longer storms.  He's not crying.  But I am worried about nutrition.  I discussed this with the Dr. M. and we've decided that for now, we're going to stay the course.  It's not optimal, but he's in a decent spot and he's got surgery to fix the hole between his artery and vein in his groin area this Friday.  No one wants that derailed...  Plus we have an appointment to see GI about this whole mess the beginning of November.  The thought is that it's better to not muddy the waters at this point.  So there's that.

And then the plague hit the house.  I brought it somehow from somewhere.  I know it manifests differently for different people.  I'm just not sure why I was the lucky one who was (and still kinda am) totally miserable.  I got to the point where even swallowing ice water was painful and tricky.  I've been cleared for over a week now but the exhaustion and sometimes dizziness is persisting.  I do okay, and then not so much.  Although I have progressed from where even showering was enough to put me back in bed.  

William on the other hand felt like it was a cold.  Michael is still wishing that the ankle he sprained a few days before getting sick would get better.  Yeah, they got off pretty light.  

The good news is that Aaron didn't get it.  My nurses stepped up big time, especially his one school nurse.  They filled in any gaps they could so we did almost nothing with Aaron while symptomatic.  So very grateful for their help!!

So that's our month in a nutshell.  I'm grateful most of the illness was over fall break when I didn't have much to do for school.  Having Michael out at the same time meant that we weren't getting up at 5:30.  But frankly, it was miserable, and I'm glad it's (mostly) over.  

Friday he is having surgery.  It should be fairly straightforward.  Should be.  They'll keep him at least overnight due to his pulmonary hypertension and anesthesia not playing nice together anymore.  Fingers crossed that we're home on Saturday, or Sunday at the latest.  And here's hoping that it does take a load off his heart like it's supposed to.  

But for now, good days are outnumbering the bad by about 10 to 1. Blessings...

 Every good gift and every perfect gift is from above, 

and cometh down from the Father of lights...

James 1:17

A Rough Week

Well, it's been a week... 

We came home last Saturday and we got 72 hours.  Three whole freaking days... 

And it started again.  

I mean, those three days were amazing!  He was laughing and playing and smiling.  Getting into mischief.  We were putting him back in pants and shirts tucked in to keep diapers on and g-tubes in his belly.  (Except the g-tube had been lengthened and was often leaking, but that's a completely different issue.)

And then I fed him his afternoon meal on Tuesday, and it all broke loose.  Cue the tears and silent screams.  Spike the fever.  Complete agony.  There's nothing more heartbreaking as a mom to have your child in pain and not be able to do anything about it.  

I mean, I guess we tried.  I stopped his feeding again and started Pedialyte, but a kid can't just live on Pedialyte.  We did that through Wednesday and then started him again on half food, half Pedialyte.  I sent a message to his care team.  When his doctor called back, she recommended that we take things very slowly, a few days of half and half, and only the very basic ingredients, and then slowly expand.  

Friday night I tried to go to the high school Homecoming game.  I made it to halftime, and they won, so there's that.  But at halftime, William called and we were back to unconsolable crying and a huge code brown (kinda like a massive diaper malfunction, TMI?).  So I went home to fevers, a very sad child, and we worked to get him (and everything else) cleaned up.  More rescue meds.  Reevaluating his GI meds (again) and almost cried myself.

Yesterday was okay, and so is today.  But I hold my breath, wondering if it will continue.

Earlier on Friday I opened up Facebook to look for someone's contact information and discovered that one of our friends had died.  Little Sam also had Trisomy 18.  Another little boy, actually not too far away from us.  They live north of Salt Lake and Primary's was their medical home as well.  Such a bright, happy child, the light of his family.  I just ache.  

I still don't know why we've been spared (so far) and so many others have not.  Sam now, Joseph two years ago: both have pieces of my heart and I haven't quite figured out how to process this.  And so many, many others.  It's hard, so hard.  

So I'm sitting here in my quiet home on a Sunday afternoon writing.  I remember their moms.  Becka and I shared so many times up at Primary's.  Melissa and I didn't quite as much, but there were still several meetings.  When we went up a few Saturday's ago, Melissa waited outside the ER to greet me and make sure I was okay.  Now she's not okay, and I don't have any way to make it better.  There's a huge Sam-sized hole in their family.  It's a physical ache, a loss.  And in one form or another, will be there for the rest of their lives.  

I'm taking a crisis intervention class this semester and one thing keeps coming back to me.  A crisis overwhelms the world we think we know and shatters our conception of how things "should be."  I've said for more than 12 years, parents aren't supposed to bury their children.  It's still true, but it happens.  Way too much.  

“Grief is love with no place to go”
― Karen Gibbs,

No Answers, But He's Not Crying

Quick update ('cause you know I'm supposed to be studying).  The title kinda says it all in a nutshell.  

We discovered an ear infection and ear drainage so that's being treated.  They stopped his food yesterday morning (and he missed two meals the end of Tuesday) and just ran Pedialyte continuous to give his gut a rest.  He continued to fever and cry whenever he was awake through early afternoon yesterday.  I got to thinking and realized, no adult I know would be willing to put up with this kind of pain.  Yet somehow, we expect kids and older people to just deal.  Nope.

So I asked what we could do.  

Ativan, you know, the stuff I gave him at home that made him sleep but he'd still struggle when he woke up.  

I figured that even if it didn't "fix" things, at least he could rest and not cry for a while.  

But maybe it did.  He really hasn't cried since then.  He did pop another fever during the night but has been fever free since then.  He's actually played today.  Not much.  He's been asleep most of the time and he's looking tired again.  But his color is good, and his sleep actually seems restful.  So we'll go with that.

They did an abdominal ultrasound today and there wasn't much that showed up there, at least that would explain what's going on.  It did show that his kidneys are markedly smaller than they were in February, which is not a great thing.  But we'll explore that one another time.  Except the med we're giving now to coat his stomach is also not something the kidneys like so much, so...

We've started feeding him again and we'll see where that goes.  Doc is talking to GI, but unless we can show an intolerance to his feeds that's probably as far as that will go.  If he does struggle, we may be able to convince them to scope him out.  Who knows.

So if things continue the way they are, we might go home in the next couple days.  Or we might not.  We have to just take it a day, a moment at a time.

"Faith means living with uncertainty - feeling your way through life, 

letting your heart guide you like a lantern in the dark."  

Dan Millman

Here We Go (Again)

We're baaack.  Except since I never wrote about the last one, most people don't know about it.  

Almost two weeks ago we went to the ER because of fevers that weren't responding to Tylenol, Motrin, or his neuro-storming med, Clonidine.  Labs and x-rays all looked good; his lungs looked amazing!  So we chalked it up to an unknown virus and went home.  Funny note: he had increased his oxygen needs to about 4-5 liters and the doc asked what was the most we'd ever run at home. When I said "15," his eyes got wide and he shrugged and said, "Well, okay then..."  Yeah, I love this new vent.

So this week...

Sunday he was "off," kinda lethargic, not very interactive.  I guess even Saturday he wasn't quite himself.  I wanted to get him up and out of bed, and thought he'd really enjoy watching football, but every time I went in, he was asleep.  

Sunday night the fun really got going.  That night, he started crying uncontrollably, sometimes screaming in pain.  Want to break your heart?  Watch a kiddo who can't vocalize scream (mostly) silently.  It was awful.    He ran fevers which only responded minimally to the Tylenol, Motrin and Clonidine.  We tried everything, including Ativan for sedation. That worked in that he slept, but when it wore off, he started again.  Tried one more time with the Ativan late Monday night.  Again, he slept, but was not happy.

His awesome school nurse came and hung out with him on Tuesday but while it wasn't quite as rough, he still had an awful time. By mid-afternoon, I was putting a call into his ped who agreed that this pain was just not good, and he recommended the ER.  

Let me tell ya, it was hoppin' up here.  They did get us back relatively quickly, but then with all the tests he needed it took a loooong time.  Results were reassuring, and not.  Reassuring in that everything once again, came back pretty good.  There was a question about some of his hips, so there were more in-depth studies ordered, but those came back negative as well.  So they admitted him in order to keep looking. 

This poor baby.  When you move him, he sobs even more.  Something is definitely hurting him.  And it breaks my mama heart that we can't find a way to make it stop.  But I'm grateful for a team that is trying to find some answers.

Please pray that we can find the answers and help him.  We miss our happy bug.  He needs to be comfortable and stable.  2022 has been really rough.  

I found this rock outside our classroom building last Friday.  It kinda says it all...

"You don't drown by falling in the water; you drown by staying there."

Edwin Louis Cole

Summer Wrap-up, and He's a New Kid!

 Obviously my writing skills are suffering.  Or something.

Anyway, since school starts for the boys on Wednesday and my kick-off is Friday, I'm calling it a summer.  It's not the one I expected when it started, but in many ways, it's been much better.

When we last left our hero, he was sitting in the PICU getting a new ventilator.  

Oh BOY!!!

We were there two days, largely because he was doing so well, too well!  He needed to have his settings reduced, and while we only turned them down a little (trying to be cautious) it was amazing!  We haven't seen numbers or activity like this in probably ten years!  

He is sleeping better, playing better, satting better on less oxygen than I can even remember.  He's back to "talking" and being goofy.  Part of it is he's STILL coming back from that awful time back in February.  For example, prior to that, he always wore either a long onesie or had pants on.  If not, he also wasn't going to keep his diaper on.  The morning we left for the hospital, he took it off for the first time since being so sick.  So there's that.

But seriously guys, this new vent!! I can't tell you how glad I am that I pushed for this.  Here he is, 24 hours into the new vent, rockin' out with music therapy.  Seriously, new kid!!

He also saw neurology on Friday.  This was a visit I was anxious for when it was scheduled.  They initially told us he couldn't get in until December, or maybe January.  I don't remember.  At the time, he was in a rough enough space that I quipped back that I hoped he was still alive then.  I wasn't being facetious.  It's been that hard around here.  We managed to adjust his medication over the phone and that, plus the vent change meant that our actual visit was a very different tone.  All is looking really good, and I really don't have words to express how grateful I am. 

My surgery went well, and after two weeks, I am doing much better.  That first week was really rough and I'm still working on getting my stamina back, not to mention I can't pick up Aaron or even my granddaughter yet.  But that will come.  

Got another kiddo who is having surgery on Wednesday because, why not?  But that's his story, not mine, so I'll wait for him to tell it.  

In the meantime, we have our son, daughter-in-law and new grandbaby visiting.  He is sooooo cute!!  The dogs weren't quite sure what to make of the new "puppy" but have since decided he's just part of the scenery, mostly.  They do wonder why the humans aren't doing more when he fusses.  It's like, "you guys, this is your job, not ours!  Fix it!"  

Michael also had his Eagle Court of Honor.  My parents were able to come up for it and for little Elend's christening.  Our house has really been hopping.  Visitors plus something about a new baby brings all the kids around more often.  It's going to be really strange when everything gets quiet again in
about ten days.  But I'm also ready to get back to a routine.  

I'm just so grateful we're doing this with Aaron still here.  Love my rainbow-colored zebra.

“Summer will end soon enough, and childhood as well.”

- George R.R. Martin