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

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

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

 

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