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"?

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

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?

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

Saturday, October 29, 2022

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


Sunday, October 23, 2022

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

Sunday, September 18, 2022

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,

Thursday, September 8, 2022

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


Wednesday, September 7, 2022

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



Monday, August 15, 2022

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


Wednesday, July 27, 2022

Summer Projects

We had planned to be raising puppies this summer.  That turned out to not happen, so we went with other projects.  

Some on the house, some medical.  Because, of course, why not?  

Anyway, we've got an upstairs bathroom that was a little rough when we moved in.  Almost 20 years later,
it was way past time to fix it up.  I LOVE my new light, and frankly, designed the rest around it.  I mean, isn't that what you're supposed to do?  

What you can't see in the "before" is all the 
holes in the wall and the general "yuck." 
All gone now!

Then we got a new lock for our garage door.  Almost no one uses the front door.  We all go in and out the garage door, and the nurses use it too.  Putting a combination lock on it meant that everyone has their own code and it's locked all the time.  But then I got to looking at that door...  Yeah...  Apparently my kids (when they were little) thought it was way cool to use their bikes and scooters to "open" the door by popping wheelies and such.  And the door showed it!  Framing coming loose, dents and scrapes on the door.  It was UGLY!  So I spent time scraping and repainting and reattaching all that.  I forgot to get a before pic, but after looks pretty awesome!  

And then there's the general clean out of "stuff" that I've kept through the years because it would be "needed" someday, or someone would grow into it.  I finally figured out that if none of the older kids were going to wear something, it stood to reason the youngers wouldn't either, but it took me a while.  

So those are the home projects, and I'm almost done for the summer.  Not that there's not a lot more that needs to be done, but frankly, my summer time is coming to a quick end.  Because you know the medical projects.

Aaron is currently in the PICU again, but this one was planned.  He's switching to a new ventilator and so far it's looking AMAZING!  He's doing really, really well!  Not sure how long we'll be here.  Apparently this stay is driven by the insurance and it will depend on how much time they say he needs to be here for observation.  I've got fingers crossed for 48 hours.  24 would also be nice.  Really hoping it doesn't end up being the 72.  

And we're still trying to figure out who can repair that hole between his artery and vein in his right groin area.  

Then there's me.  A few days before his heart cath I woke up about 1:30 in the morning in significant pain near the bottom of my ribcage.  I tried for about five hours to talk myself out of it, took antacids, Tylenol, tried different positions.  Nothing really worked.  About six, it became hard to breathe because it hurt so bad so I gave up and woke William.  The good news is that it wasn't my heart, which is what I was afraid of.  The bad news is that. they think my ulcer may be back and I also have gallstones, one that's especially big.  

So lucky me, I get to have my throat and stomach scoped in September, and I'm having my gallbladder out on Monday.  'Cause isn't that what everyone wants to do during summer?  Frankly, I'm feeling fine!  But the doctor warned me that if I chose to wait until I didn't feel "fine" I would end up really sick.  So I guess I'm doing this on my schedule instead of my gallbladder's.  The good news is that I'll be mostly recovered by the time school starts again.  The hard part is I can't lift anything over 20 pounds for four weeks.  Yeah, Aaron left that one behind a LOOONG time ago.  And because I have never figured out how to sit back and tell people how to work without jumping in, that means that any projects around the house have to be completed before Monday.  I guess that's okay.  We did get a lot done, and learned a lot in the process.

School starts again in a few weeks and I can't wait!  I've needed this break, this time to not focus on the academics, but I'm ready to get going again.  Part of self-care involves changing things up

You must learn to make the whole world your school. 
~Martin H. Fischer

Saturday, July 9, 2022

Mischief Managed

Heart cath was yesterday, and by all indications, it went really well!  

I haven't been this nervous for a procedure for a long time.  Of course, it's also been a long time since he's had one.  2017 to be exact.  His last heart cath.  The one where we decided that we weren't going to be doing that again without a really good reason.

We had a really good reason. According to his last echo, he was in rough shape.  His pulmonary hypertension is working his heart too much, and there wasn't much of an outlet. 

Think about a traffic jam where all the cars are trying to get through.  Or maybe a really crowded highway.  But often there are other surface roads that might help relieve the congestion.  

Most of us don't have any "surface roads," but we also don't need them.  Our "highways" are more than sufficient for the "traffic."  His?  Not so much.  So that's what yesterday's plan was.  Construction to widen a surface street to alleviate some of the congestion.  Does it fix the problem?  No, not at all.  Still too much flow for the vessels and like taking a surface street, it's not ideal.  Frankly, we put a bandaid on a pretty big wound.  But that bandaid does buy time.  And time is precious. 

Reality is his numbers were ugly.  Our pulmonary pressures are about 1/3 of our systemic pressures.  (Blood pressure in the lungs vs blood pressures throughout our body.) Not his.  At his last cath in 2017, the numbers were pretty equal.  This time, at the beginning of the cath, his lung pressures were about 30 points higher than his body pressures.  That's not good.  

The doctor was able to open up his PDA some, actually about double in size from 2mm to 4mm which will definitely give some relief for the right side of his heart.  On the other hand, it will also lower his oxygen saturations, especially to his lower body, because when you mix mostly unoxygenated blood with mostly oxygenated blood, well, you know how averaging numbers works. 

On the other hand, he still has the hole between his femoral artery and vein on his right side.  The artery above the hole has dilated significantly, which made repair in the lab not safe.  In order to put in a patch big enough for the upper part, it would have probably torn the artery below the repair.  Kinda not a good thing...  So our cardiologist is going to talk to general surgery and vascular surgery and we'll go from there.  But that's a conversation for another time.  

On the positive side of things, he's looked really good for the past couple of weeks.  He was as optimal as he gets going into the procedure.  This morning he woke up happy and we'll just take it from here.  The plan is to go home today but we'll also see what today brings.  For now, he's in a good place and ready to move forward.  

After all, he is the Boy who Lived.  

"We’re all human, aren’t we? Every human life is worth the same, and worth saving." — Kingsley Shacklebolt. Harry Potter and the Deathly Hallows

 

Sunday, July 3, 2022

Summer: Rest, Relax and Heart Cath (One of These Things is Not Like the Others)

 Lazy summer days (or something like that?).  

I LOVE summer.  I even like the heat (most of the time).  Days are slower, less hectic.  

Time to read, relax, rest, and recover.

And while Aaron doesn't read, he loves to be read to and he seems to be handling the other three as well!

It's been a slow process.

Just over five months ago, our traumatic hospital stay started, and only a few days shy of when things got truly awful.  Remembering him lying so still, so swollen, so non-responsive is beyond painful.  I asked my mom sometime this spring (April-ish?) how long it had taken for her to start to feel like she might recover after her own battle with sepsis.  She replied, "Oh, months. Months and months."

Well, here we are, five months out.  And guess what?

It's starting to look really good again!  He's smiling, he's playing, and while he doesn't have the energy he did before, it seems to be improving as well.  

He has struggled lately with a lot of digestive issues.  We've been working on his diet but finally his ped and I decided that things were just too suspicious to keep waiting. He ordered an abdominal and pelvic CT scan with contrast for Friday, June 24.  We went up and Aaron was doing okay.  He wasn't thrilled about taking in a liter of fluid over about 30 minutes, and he really didn't like the IV, but after that?  Well, I love how Primary's tries to make things as fun as possible and the CT room is no exception.  Apparently he thought it was pretty cool, too!  We placed him on the gurney and he just grinned and laughed as it slid in and out taking pictures.  Five minutes later (maybe not that long), he was done and we were on the way home.  

And what did it show?

Well, the digestive part was pretty unremarkable, which is great!  But just because you're looking at the digestive system doesn't mean that the rest of things just get out of the way.  We also saw his lower lungs, his diaphragm (both a bit abnormal but nothing new there), and his blood vessels.  Those blood vessels...

I don't think there's really anything "awful" about what's going on there, but he's definitely got some funky stuff going on.  And that CT scan that we just barely had, that showed us this?  Well, that is going to make a big difference this week.  


I mentioned that we were going to switch out one of his cardiac meds for another one.  Well, that experiment did not go well.  I have no idea what it did or would do for his heart because his digestive system did not like it.  At. All!!  In fact, when we went to DreamNight at the Zoo, he was either out of it or miserable.  It's so hard to watch your child struggle and suffer and not be able to do anything to fix it.  While I think everyone else enjoyed the outing, it was very much bittersweet for me.  Hard to see him so apathetic to what used to be a fun outing, but at the same time, I saw so many friends that I never see.  While the kids (okay, most are adults now) enjoyed the zoo, it was seeing other special needs moms that filled my soul. 


Anyway, back to the CT scan and where that's going.  I was able to speak to the cardiologist who is scheduled to do Aaron's heart cath and we are going to go ahead with that procedure.  She feels the risk is more than outweighed by the benefits and after talking with her, we agree.  But having that new information ahead of time means that there will be fewer surprises when she goes in, and hopefully none!  

So we will be heading to Primary's on Friday, July 8th, for his heart cath.  She will "probably" go in through his left femoral site, try to get pictures and possibly repair the fistula on his right femoral artery/vein, and then move into his heart to get more information and possibly open up his PDA more.  

It's risky.  Truly.  As I've mentioned before, his asthma and pulmonary hypertension are not friends with anesthesia.  And a heart cath brings its own risks to the table.  But the benefit would be a more energetic, longer life for him and after reviewing the risks (again), we decided we need to give him that chance. 

So I guess the long and short of it is, please pray for him, for us, and for the doctors and staff who will care for him.  Today is Fast Sunday for our church, and we would ask that if you're willing, you'll remember him in your fast and prayers.  I believe in miracles.  

Summer, when good things happen.

"God's gifts are measureless, and there shall be
Eternal summer in the grateful heart."
~Celia Thaxter

Monday, June 13, 2022

12 Years, 4383 days, 105,192 hours

So many numbers.  They only begin to tell the full story, one that is not over yet.  

Today Aaron turns 12.  Twelve years!!

Last night we had a party for him.  It was a much smaller scale than his first party, but similar as well.  Friends and family came to wish him happy birthday.  We had cake.  And he was tired.

He pretty much slept soundly through his first birthday.  


And he dosed off and on all evening yesterday.  

It's just where we are now.  

So grateful for this little man, this teacher of our souls.  He is such a blessing in our family and in the lives of many others.  


He did wake up and smile when he heard the sirens though.  I pointed out that yes, his friends had come.  And No, he wasn't going with them.  


Happy Birthday, Aaron.  We love you.



"The more you praise and celebrate your life, the more there is in life to celebrate."
Oprah Winfrey







Thursday, May 26, 2022

I Stand for Good Days

School is ending which means end-of-year activities.  Field Day, graduations, concerts and dance festivals.  

Dan Peterson School has a dance festival each year.  Each class dances to a short song.  There's a Sno Cone truck.  Pretty fun!  If you want to see movement with enthusiasm, these kids have it!

Holli warned me that I would cry.  I didn't understand.  I kinda got an inkling when I realized his class was dancing to "Still Standing," but even then, I didn't understand.  

As the kids came out, they each had a big sign with "I Stand For _______."  "Music."  "Achievement."  "Me."  Aaron's was backwards, which I thought was a little odd, but whatever.  

And then he came forward and Holli turned his around.  Somehow, I suddenly couldn't see clearly.  "I Stand for Good Days."  Good Days.  Yeah, we haven't had a lot of those lately, but that's what he chose.  And it was his choice.  They didn't choose for him.  

This kid.  With all he's been through, all he's going through, he stands for good days.  What an attitude. 

Frankly, I think there have been more bad days than good lately.  But him?  He's still standing, still smiling, still reminding me to keep going.  

Aaron saw cardiology on Monday.  It didn't go well.  While both sides of his heart continue to squeeze well, the right side has gotten quite large and is also much thicker before.  Increasing muscle size?  Pretty awesome for biceps and triceps.  Not so much for the heart.  It's being overworked.

Somehow the VSD has started closing.  This would have been great in the beginning, but now it's needed for pressure release.  His doctor wants to try to change one of his meds, hoping that if he takes it through his g-tube instead of inhaling it directly into the lungs it might be less irritating.  He also wants to consider doing a heart cath, possibly repairing the hole between his right. femoral artery and vein, and maybe widening his PDA.  That's a duct between the pulmonary artery and the aorta.  Then that could act as the pop-off valve he's needing.  

But Aaron doesn't play nice with anesthesia anymore.  It gets into a brawl with his asthma and pulmonary hypertension and no one comes out a winner.  There's also a risk of the hole rupturing during the procedure which would be catastrophic.  

On the other hand, he's not doing great most of the time now.  He's tired.  He's still fevering off and on. He's starting to retain fluid in his belly due to the congestion in his heart.  We don't know what the "right" answer is.  

Years ago, when a dear friend told me her daughter was "done," she told me they realized they were doing "to" her and no longer "for" her.  We want to do "for" Aaron for as long as it helps him, but have no desire to torture or do "to" him.  

Last week when he was struggling, we saw his pediatrician.  I knew if I took him in, they'd admit him.  But if there's nothing that we can do, I don't want to tie him to a hospital bed, and his ped can order the labs and x-rays needed.  Nothing jumped out, so we just continued maintaining at home and letting him go to school.  And to his dance festival.

We haven't given up.  He also has shown signs of food intolerance regarding his formula.  For the past two years, he's had formula five days a week and blended food twice a week, at least up until he got so sick.  Then for several weeks, it was just the formula.  Knowing he does better with real food, we've gone back to blending full-time.  It can take up to two weeks to clear that out of the body.  I'm hoping that will help.  

But the reality is, we just are not sure what to do.  So we're turning to the One who does.  He loves Aaron, even more than we do, and He loves us, too.  On Sunday, we're going to hold a family fast where we ask for healing, for guidance, and for strength.  We would love to have as many people who are willing to storm heaven's gates, praying for Aaron, for us.  We know miracles are real.  We've seen them, felt them.  We also know that sometimes the miracle that comes is not the one we're hoping for, but it does not make it any less miraculous.  

We've had almost 12 years with our sweet boy, and frankly, I'm greedy.  I want more.  But what we really need is clarity and guidance and comfort.  

And through it all, we'll still be standing for good days.  

"Howbeit this kind goeth not out but by prayer and fasting."
Matthew 17:21