The Unknown is Scary, and Hard

I'm just sick. 

All along, with everything else, trach, g-tube, lack of mobility, and everything, I've been grateful we didn't deal with seizures. 

Oh, we had them here and there, occasionally, as in probably less than five times in his life. 

Until this week.  Since Thursday, he's (at least) doubled that. 

On Thursday, he had four "episodes," none lasting more than 45 seconds spread through the day.  His face turned red, he went stiff and non-responsive, but his vitals didn't change, at all. 

Friday morning, he had 5 within a 15 minute period and this time, his heart rate shot up into the 140's each time and then dropped back to where it belonged in the low 100's. 

I spoke with our ped Friday evening.  Respiratory season is still in full swing at the hospital, and if he's not actively seizing when he's seen, chances are they won't do anything at all, especially since it's a weekend.  So far, his vitals have all been within our realm of control, and he's on monitors that would alert us to a change in his heart rate, respiratory rate or his oxygen.  So we decided to watch and wait. 

What that means is that I monitor him this weekend, and if we don't see anything, we probably just keep watching.  If there's one or two here and there, well, we need to start looking into things next week.  Obviously if they increase or cause issues with his heart or breathing, we can't wait, and head on in. 

So now what?  Well, he's been really tired.  Yeah, seizures do that.  He slept from about 7 pm until 11 am yesterday, and then from 7 to noon today.  His oxygen has been a bit wonky, but not totally out of control, just close, 'cause that's the way he rolls. 

And then about 1 pm, I realized I was seeing another one.  And it's got me wondering how many I've missed.  I mean, if they're 15-45 seconds, if my eyes aren't on him at that moment (less than a moment) I miss it. 

I really have no idea where we're going from here. 

Thursday night I sat with my husband and told him I just couldn't do this.  It was too hard.  This on top of other stresses was just too much.  I can't.  Except, I have to.  He reminded me that when we were much younger with only two kids, things seemed pretty overwhelming, and then a third (and more) came along.  If that 20-something me had had to deal with all of this, I'd have had a breakdown.  (Okay, jury may be out on whether or not I did anyway.) 

I remembered my Nana, who sent not only one, but two husbands off to war, buried a premature infant, and never saw her first husband again after he went MIA, and then outlived her second husband by 20 years, fighting cancer long after everyone thought it was over. 

I remembered my mom, caring for six kids while Dad was often away with the military.  How accidents and emergencies always seemed to happen when he was gone, and she just did it.  I don't ever remember her complaining that it was too hard, or that he should be there.  She just handled things. 

And I realized, I may not like this, in fact, I'm pretty sure I hate it, but I will still do it.  Because what other choice is there?  It may not be elegant, but I've never been accused of being that.  It may not even be pretty.  But I can, and I will, and I will not only for Aaron, but also for my other kids. Regardless of what life throws at us, we'll come through it, maybe battle-scarred, but stronger than before. 

"For I the Lord thy God will hold thy right hand, 

saying unto thee, Fear not; I will help thee."

Isaiah 41:13

Tomorrow?

Kinda feeling like Annie right now, “Tomorrow, tomorrow, I love ya, tomorrow, you’re only (always?) a day away.”

Yep, not going home today.  He managed to stay on the home vent yesterday, but spent most of his time between 13 and 15 liters.  Not gonna work for discharge.

But that’s okay, we’ll get there.  He’s resting now and down on eight liters.  If he can stay there, we have a chance.  We also started steroids this morning in hopes that maybe this increased oxygen need is due to his asthma acting up.  It’s the right timing.  Plus, he was needing less oxygen on Thursday than he was yesterday.  His breathing rates increased, too.

The downside of steroids is that it can make it harder for the body to fight off infection.  But given everything else, all his labs and so forth, the team felt good about trying the steroids.

So maybe, maybe tomorrow??

Of course, when I called William last night, discouraged because I was so hopeful for discharge today, he laughed and reminded me that he said he’d see me next Wednesday.  I sincerely hope it’s before then!  I’ve got too much going on.

Laughing, while on 15 liters of O2!

So we continue working on things.  All in all, it’s not too bad.  He’s still happy, still playing most of the night.  This kid is going to have a rude awakening when he goes back to school.  I may, too.

“If we are facing in the right direction, all we have to do is keep on walking.”

~Buddhist Saying

Doing Better!

We seem to have finally turned the corner.

They tested him for MRSA, which (thankfully) came back negative.  That meant we could take off his Vancomycin, you know, the stuff he was reacting to.  So that’s gone.  The nasties he’s been growing out are sensitive to his inhaled antibiotics that we use, so we have a plan there, too.  Right now, he’s still on his other IV antibiotics, but we’re transitioning over to his inhaled ones.  The good news is that we’re already set up for them at home.  We’ll just start his next cycle a week early.

Last night he finally got to where we could try to use a trilogy ventilator instead of the big Drager.  He wasn’t quite well enough to use the home version, so they put him on the ICU one, but right now, as I’m typing, the respiratory therapist is putting together the home one, and all signs point to it working well.

He did stay up ALLLL day yesterday, and then continued to party until 4 am.  I didn’t get much sleep either.  So my guess is he’ll sleep most of today.

Home vent!  (and tired little boy)

Our goal is home tomorrow, and it might actually happen!!

In other news, Sunday is March 18, Trisomy 18 day.  Please wear blue for T18.  Help us spread awareness.  When you first get that diagnosis, you feel so alone, you’ve never heard of it, no one knows anything.  In fact, even today, if someone knows what it is, I ask why they know.  And a family member, or a close friend lost a child to T18, but that’s the only thing they know.  A carpet cleaner came to do Aaron’s room a few weeks ago, and he knew about it.  His best friend has a sister with it.  And when he gave me their name, I knew her, too.  A family in Arizona who is an intergal part of our network.

But let others know about it.  The diagnosis isn’t really that rare.  And with increasing education among the public and medical professionals, the survival rate for our little ones is increasing.  They are such a blessing in our lives.

Yesterday, a little boy, almost 12 years old passed away.  My heart is broken, shattered for his mother.  She was one who reached out to me in our early days, sent me pictures of her precious child to encourage me.  I’m having a hard time processing this.  But in her words:

My heart is sad with the physical loss, but more feeling the light and joy that he brought to my life. He was a gift. He inspired me with his tenacity. Lance truly lived every day to the fullest. His life is not to be pitied or remembered as a tragedy, but to acknowledge that his life showed me that you sometimes should take chances and cherish everything that you are given ❤️

Our children, our gifts, the teachers of our souls.

The first step towards change is awareness.  The second step is acceptance.

Nathaniel Branden

Rough Ride

It’s been a tougher go this time around.  Not anywhere close to what a lot of my medical mama friends deal with, but still, for us, it’s hard.

Over his last several admits, we have come in at or close to the peak of his illness and need some, but not much, extra support, get better and get out.  This time, we were admitted pretty close to the beginning, plus there was the whole need-way-more-support-than usual thing.  Like I said last time, we haven’t needed this vent for several years, and he’s still on it.

We tried to reduce his PEEP from 14 to 12 on Monday, but I guess he forgot to read the script, or just decided to go rogue.  Whatever the reason, it didn’t work.  (FYI, most of us would probably sit about 5, and Aaron’s usual is 10.)   When we increased it back, he still needed more oxygen.  He spent most of Monday afternoon and all of yesterday needing between 80 and 100% oxygen.  They also tried to stop his antibiotics because his samples weren’t growing much out.  But by afternoon, we were pulling some really nasty, thick, tan colored secretions out of his trach.  For the record, that’s not a good thing.

So we restart the antibiotic (he only missed one dose) and also added on one more, Vancomycin.  The thing with Vanc is that it can cause something called “Red Man Syndrome.”  Now, he’s had Vanc before, quite a while ago, and not had any problem at all.  Again, not this time.  Poor baby, as the IV meds finished, his face turned tomato red, swelled a little, the rash spread over part of his torso and back, and down into the groin area.  Treatment was Benadryl, which knocked him out.  

All in all, it was a really rough day.  Not only did we not make progress, but he continued to get worse.

But then, Daddy showed up for a little while in the afternoon, which brought out the biggest smiles we’ve seen so far!  He’s been happy pretty much the whole time, but not nearly as much as when Dad came by!  And after his long (Benadryl-induced) nap, he stayed up most of the night.  You know, his typical routine.  He’s sleeping again now, and we have (finally!) been able to wean down on his oxygen again.  The charge nurse brought by a beautiful quilt for him that someone donated.  

So life is not all bad.  There are some incredible people here who take really good care of him.  The PICU is bursting at the seams again, mostly with respiratory “stuff”.    Part of the neuro trauma unit has even been converted to extra PICU beds.  But they all keep working hard, trying to keep these kids safe, get them better again.

And I’m so grateful for them.

“A river cuts through rock, not because of its power, but because of its persistence.”

James. M. Watkins

Double Whammy

Well, I got half of the diagnosis right, he does have rhino.  I missed the pneumonia.  Oops.  

Yeah, pneumonia.  I think I mentioned a long time ago that it’s the longest four-letter-word I know.  No bueno.

There are a variety of ventilators that are used for patients depending on their needs.  At home, we use a Trilogy home vent.  Works great!  There’s an ICU version which lets us give up to 100% oxygen because the home vent is limited to about 60% (and that’s on 12-15 liters of oxygen).  That’s what he was on yesterday when I wrote, and using 80%.  That worked for a little while, but didn’t last.

We ended up on 100% on that vent and he still wasn’t terribly impressed.  By the time we got settled in the PICU, they had to switch him to a more sophisticated and powerful vent called a Drager Evita. There are still more complicated ventilators, but he’s never had to use one.  We used to be on the Drager when we came in, but that was before the hospital had the Trilogies.  We haven’t used one for over four years.  But this kid wants what he wants.

Overnight, we were able to wean his oxygen down from 100% to 55%, but he’s also on much higher support keeping his lungs open.  The immediate goal was to get his oxygen down so that if he got worse, we had some room to move to help him, rather than already being maxed out.  They haven’t rounded yet, but I think (I hope) today’s goal will be to reduce his support settings closer to his home settings, and then we continue to work.

He’s had so many x-rays, he glows in the dark!

Long and short, he’s pretty sick, and there is no way we were going to be able to take care of this at home.  And I’m so glad I listened to that little voice yesterday morning that said, “it’s time to go.”  With the support he needed by late afternoon, it would have been a challenge to get him up here, even bagging him all the way.  Much nicer to drive ourselves than to have to rush up with lights and sirens, which is where it would have been.  

That white stuff? Not good.

BUT, someone also forgot to tell him that he’s sick, which is huge!  When he didn’t have the support he needed, he was tired, almost lethargic.  But support him?  Yep, smiles and songs and crazy hijinks.  He serenaded the unit last night while also pulling his wires and monitors off.  He took his 15 minute nap about 9:30 last night and then was good for a long, late-night party.  Right now, he’s asleep, but my guess is most kids who stayed up late would like to be as well.

So it’s going to take time and effort, but he’ll get better.  They’ve got some high-powered antibiotics on board, given that the most likely culprit is psuedomonas, a nasty bacteria.  And in the meantime, there is a lot of staff around here who are stopping by to say “hi” to him, and remarking about how wonderful it is that they haven’t seen him for almost six months.

Yep, life is good.

Life:  it’s about the gift not the package it comes in.

Dennis P. Costea, Jr.

Party’s Over

Well, it was fun while it lasted.  Aaron started having cold symptoms yesterday morning and by this morning I was out of tools to keep him home.  We’re in the ER right now but I drove us up here (taking my victories where I can).  He’s headed to the PICU after they get x-rays and labs.  He’s just on too much oxygen to go to the floor.  My money is on rhino again.  

So here we go.  You know that song from the 80’s?  “Should I stay or should I go? If I go there will be trouble.  If I stay it will be double.  So come on and let me know, should I stay or should I go?”  Yep, been singing that in my mind for the past 24+ hours.

How’d we get here?  Well, it was like this.  I think I may have jinxed myself.  On Tuesday, Aaron threw a plug about the same time he got off the bus.  In fact, he’d done the same thing last Friday, five days earlier.  I looked at the kid and told him that I had an insanely busy week and if he was going to try any funny business, he had to wait until Saturday night.  He wasn’t an only child and this was the week I was tied up with siblings.  Guess he took me at my word.

He actually did really, really well all week.  I was down at BYU with the Dancesport Wed, Thursday and Friday, AAALLLLL day.  Then on Saturday, Andrew had his Grand Concert at the middle school.  Saturday morning he started having more trouble breathing, more junk coming out of his trach, followed by his nose.

By this morning it was pretty obvious, I could either try to bring him in on my own, or wait a few more hours and call an ambulance.  So I hyper-oxygenated him by bagging him up and put him in the car.  We made it up here just fine, and then he started struggling again.  We’re now on 80% FiO2 on the ICU vent.  So yep, apparently it was a good call to come on in.  

And so the ride begins again...

Every day has a little bit of beauty and a little bit of chaos. 

~Tanisha,