Living on Borrowed Time

I'm finding I'm not doing so well at keeping this updated, or writing, or whatever lately.  In my defense (I seem to be feeling defensive more) I am finishing my Master in Social Work degree.  That's been pretty intense, and then so has Aaron.  So a lot of my "processing" hasn't been happening on here, and my lack of focus might be showing.  Yeah, there's that.

But anyway, Aaron's had some more "fun" lately.  Last weekend he had tummy trouble again.  I stopped his food and started a pedialyte clean-out. (Yeah, it's as fun as it sounds.) We thought we worked through it, fevers went away and he started pooping again.  Then Monday I got pictures from his nurse.  That tummy was BIG! Like 9-months-pregnant big!  Uh, not so good.  

Our awesome ped's nurse called in x-rays to the local hospital and away we went.  They were pretty ugly.  Lots and lots of large air pockets in his intestines (which is much better than outside the intestines).  Anyway, that earned him a trip north to the Hotel on the Hill.  

The good news is that it was not a blockage.  It probably was another ileus, but this time it only took a short time to resolve, unlike our three week stay in December.  He didn't even end up with an IV!  I was worried that surgery would be needed, and concerned that it seemed to be going that way.  When I expressed my hesitation, I was grateful to hear the surgeon say that she was really reticent to do surgery on him, that they wanted to exhaust any and all other options first.  Thank goodness.  I keep saying it, but he and anesthesia are not buddies.  

So we were inpatient through Thursday mid-day. It really was a smooth stay as far as those go. We ran pedialyte at a slow rate at first, switched over to half food half pedialyte for several feeds, and then did full feeds for 24 hours and ran away!

Then...

Well...

About two hour after we got home, he started running high fevers.  We're not seeing anything else, and his O2 needs are still really good, so for now we're just hanging out.  But man, this kid (and I) could use a break!

Last Sunday was Easter.  For part of our focus during Holy Week, we wrote scriptures or brief comments about the Savior and put them inside plastic Easter eggs.  After dinner, we opened them and read them out loud.  Two really stood out to me.  Three-year-old Linnaea said, "Jesus makes me all better."  Yes, yes He does.  And then, "The tomb is empty."  This one choked me up.  It is empty.  And because it is empty, someday our graves will be as well.  Death is not the end.  It has been conquered.

Our first year, I was on tenterhooks the whole time, waiting for Aaron to die.  We'd been told it would happen, and it almost did a few times.  Since then, in many ways, I've moved passed that.  But February 2022 brought it back in stark reflection.  For the past 14 months, I've almost felt like we were living on borrowed time.  I mean, we are, all of us.  But it's not something that most people think about.  We just live, we expect to live.  However, now, every time he gets wonky, every time he's admitted, I worry.  I find myself hypervigilent.  

I guess that's part of living with a medically fragile loved one.  Cramming as much of life and love into a short time as we can.  But also knowing that the Tomb is empty.  Death has lost (a little bit) of its sting.  Christ is risen, risen indeed.

We're all living on borrowed time. The trick is to come up with works 

of sufficient interest to pay off the debt.

John M. Ford

Heading Home! (finally)

This kid is ready! 

We will be on our way as soon as his last breathing treatment and feeding are done!

We thought we were going home yesterday, but overnight Saturday he popped a brief fever and he had some weird things pop up on his heart tracings.   In looking at things, cardiology seems to think the aren't real, and his fever resolved without any meds.

So here we go, take 2! 

Yesterday, we had a full-on blizzard (or snow squall) up here. But in the window of the Ronald McDonald Room, daffodils are blooming.  There's something about the cheery yellow bloom that gives me hope, especially nestled against a frigid, white snowstorm.  

Spring is coming, even when it doesn't feel like it.  Healing will happen.  It may not always be in the way we think is "best" but I faith in a higher power that it will be in a way that will help me to become the person I am meant to me.  And I am grateful for the small reminders all around me that life is precious and golden, and always renewing.  Winter may be dark and bitter and cold, but spring will bring new life.  

No matter how long the winter, 

spring is sure to follow. 

~Proverb

Blood for the Win!

And it's blood for the win!!

The PICU put him on iNO (inhaled Nitric Oxide) on Saturday to try to get the oxygen into his tight, stiff lungs.  By Monday he was more stable which led to them trying to wean it.  We started on Saturday at 20ppm and weaning is a slow process, done in steps, each trial being about six hours.

Monday they tried to turn him to 15ppm.  He did really well for about 5+ hours, then nope! He went back to 20.

Tuesday we tried again and this time made it to 15.  But an hour into his next step at 10, he reminded us who is in charge, and it's not us!  Back to 15.  

By Wednesday, his cardio weighed in.  (She's actually out of town at a conference where she's presenting, but she still checked in for consult.  How lucky are we?) She had been looking at his labs and meds and everything and wanted him to have up to two units of packed red blood cells.  Yes, we did this back in December.  But his crit and hemoglobin had dropped anyway.  He wasn't crazy low.  In fact, he was basically on the low end of normal.  But cardio kids tend to do better when they're on the high end of normal, or even higher.  

Once again, it seems to have been infused with pixie dust.  He only got one unit but it brought him way up and woke him up, and made him mischievous.  He's been undressed most of the time, mostly due to fevers but those stopped a few days ago.  But it's easier to see work of breathing and color and everything else if the child is not clothed.  Today when I got back from my internship, he had a sneaky grin on his face and he was in jammies. His nurse confirmed they'd put clothes on in an effort to keep him from pulling his leads off and his g-tube out.  Yep, he's back to causing trouble!  

Yes, he has a black eye.
He did it to himself.

So how do we get home?  Well, he's still on 2ppm so we have two more steps to get off the iNO.  Then we have to make the jump back to his home vent.  It looks like that will be pretty easy, but then, again, we haven't exactly gotten his sign off.  We also need to wean one of his inhaled meds back from every 4 hours to every 6. 

There are a few more steps before we get out, but I'm cautiously optimistic that it will happen this weekend, probably Sunday.  

And I'm so grateful.  Hospital stays are hard, not just physically but emotionally as well.  When we get to the point where I can't sustain him at home, that means he's kinda precarious.  One sibling called last week after I texted family to ask if she needed to be within cell phone range while out with friends.  She was worried that things might change that quickly.  I assured her (and was confident in my assurance) that nothing would be happening that night.  I hoped, and was again, cautiously optimistic, that we would be able to work through things and come home. 

No one is guaranteed tomorrow, least of all someone who outlived their life expectancy over 12 1/2 years ago.  I'm reminded almost daily as others move on to their heavenly homes.  It's a refining process to witness those heartaches, knowing that someday ours will come too.  

I've said before, I don't know why we've been spared when others have not.  It's certainly not because he's loved more than they were, although he is loved beyond measure.  If loved saved babies, they would live forever.  

So we'll treasure the time we have, be grateful for the opportunity to make more memories, so grateful for yet another reprieve.  

Blood is that fragile scarlet tree we carry within us.

Osbert Sitwell

PICU at Primary's

Here we are.

And "here" is in the PICU. 

I mentioned he was struggling more on Friday evening so the plan was to transfer once they got a bed space ready and clean.  Um, they did it, but just barely in time.

Aaron dropped precipitously again.  I announced to the nurse I was taking him off the vent and bagging him.  The called the rapid response.  Our poor attending had just cycled on about 20 minutes earlier AND had been called to a Code down the hall as well.  Then there was us. She showed up, took one look and said, "I want more bodies in this room!" 

"Do you want a rapid response or a Code?"

"I don't care, just get me more people!"

So yep, that was what happened.  We actually moved pretty quickly. As we approached the elevator, security was there and started apologizing saying they were holding it for a Code.  Doctor said, "we are a Code, we'll take it and send it back for the other one."  

Yeah, so that happened.

Yesterday he continued to struggle with fevers and respiratory support. We put a pulse ox on his foot and his hand.  Those numbers rarely if ever match due to his pulmonary hypertension, but they're 5-10 percentage points apart.  Yesterday? 23, TWENTY-THREE points apart.  With that information, the attending decided to start nitric oxide.  It's a lighter gas, smaller particles, and it allows for easier, deeper penetration into the lungs.  Sometimes it works; sometimes it doesn't.  This time we saw almost immediate improvement.  

We continue to work towards what he needs. They've broadened his antibiotic coverage and tested his heart, switching one antibiotic for another that's not quite so hard on him but still strong.  He's slept a lot, but is waking and playing now.  

We're going to be here for a while. Once he can be weaned from the nitric oxide (NO), it will take at least two days to get off it, and we're not to where we can start turning it down yet.  We'll have to see how things go.  But he's getting the support he needs which is the important part.  

The trick to life is to just keep breathing. 

– John Landry

Our Week and Defining Hope

In the ED Sunday night

Sooooo, this kid...

Last weekend I went to Arizona to see family.  We planned it out, got daytime coverage for Aaron, and Daddy and Michael were handling the two nights I was going to be gone.  We had trip insurance because, well, you know.  He looked good.  Everything looked good.  I stayed in touch.  Everything was good!  

Was...

Yeah...

I'm grateful he waited and behaved while I was gone.  He quit as soon as I was home.

As I walked through the door, Holli said, "well, he knew you were coming home."  About three minutes before I got there, he started acting up.  

And then more.

And then more.

He dropped his sats and the only way we could get him back was by bagging on 15 liters of oxygen. We tried everything. More albuterol.  He'd just had his inhaled heart med. Changed the trach out. 

At one point he even brady-ed down (dropped his heart rate into the low 40's).  Haven't seen one of those episodes since he stopped having central apnea at two months old.  At that point, I grabbed the phone and called 911.  Fortunately, he recovered quickly because I was ready to tell dispatch that the paramedics needed to consider the chopper.  

I wasn't happy.

They got there and it was definitely a "throw and go" rather than a "stay and play" (where we simply bundle and head out rather than working on him at all).  

We went lights and sirens all the way up.  While he's had several ambulance rides, we've only done that a few times, like maybe 3?

So that was Sunday night.

We got here and he looked "okay." White blood count was a bit higher and his x-ray was read as possible pneumonia but he was completely asymptomatic for that and his docs and I were all a but underwhelmed by the film.  Still, he was needing 10-15 liters of oxygen, although on his home vent settings.  So we went to the floor (about 5 am, long night!).  

Since then, he's kinda just hung out.  He's needed less and less oxygen with yesterday spending most of his time at 8 but a significant portion actually at 6 liters, with occasional bumps up to 10-15.  Repeated labs and his white blood count was down. Things were looking pretty good and I became cautiously optimistic that we could head home this weekend.

Yeah....

Um, maybe not.

Yesterday he started in with fevers, and more oxygen needs again.  Repeated chest x-ray (still the same, kinda looks like him). Pulled labs again; white blood count is even higher than initially.  Did a urine culture, totally, completely normal with nothing at all.  And more fever with accompanied higher heart rate. He even triggered a sepsis alert.  

No, he's not septic and we knew that. It's just if there's a combination of various symptoms the computer alerts staff to look further and consider it.  And he was there.  

Plus, he's sleeping more and less interactive.

So, what do we know? (or think we know). Don't think it's neurostorming. His fever yesterday and last night responded to Tylenol and Motrin. Those don't do anything if he's storming.  It's not a UTI.  Probably not pneumonia, but we might need to take him down to radiology to get a two-view look to make sure nothing is hiding.  But again, he doesn't have any secretions and he sounds pretty good in his lungs.  Viral panels have been run twice and came back clean both times although could be something that's not tested for (it's about 27 different viruses).  He's still having ear drainage from surgery, but the doctor is going to talk to ENT and have them look. Trach aspirate only grew out a tiny amount of bacteria, and they're ones we know he's already colonized with.  Blood cultures from admit haven't grown anything but we've pulled more.  Heart actually looks pretty good! His BNP isn't in the normal range but has continued to drop from our stay in November/December which had dropped from earlier in the year.  

So we're kinda shooting in the dark.

But going home this weekend? 

It's looking less and less likely.  

I encountered a definition of hope this week in one of my classes that really resonated with me.  

"Belief in the plausibility of the possible as opposed to the necessity of the probable."

Read that again.

The plausibility of the POSSIBLE, as opposed to the necessity of the probable.

Isn't that why we do it? Isn't that why we try? The possible IS possible, and so we keep moving forward. That's why the toddler keeps trying to stand and walk.  That's why the student keeps trying to figure out the concept. That's why parents keep fighting.

We fight because of the plausibility of the possible. We have a dream, a goal.  We have a child that relies on us to be their voice.

And so we keep going, working, not giving up.  

We can't.

We won't. 

And it's totally worth it.

"Hope is the belief in the plausibility of the possible, 

as opposed to the necessity of the probable."

Maimonidies

Update: today did not go as planned. He struggled more, became maxed out on his respiratory support on the floor, was feverish and basically looked bad. So we transferred down to PICU. Not a reflection on the care he got on the floor. He just needs a higher level of care at this point. Again, we'll get there.  

The Same-Day Surgery That Wasn't

Beep, beep, beep, beep...  

It keeps on going, relentless, sometimes higher, sometimes lower.  If the tones (and sats) drop enough, that decreasing timbre is joined by a higher alert alarm as his sats drop below acceptable limits.  If they continue, the alert alarm increases: in volume, frequency and stridency.  

Beep, beep, beep, beep... in rhythm with his heart beat but the tone is determined by his oxygen saturation.  

It becomes background noise, and I almost tune it out, until it drops lower, and the vent chimes in, too.

Aaron and anesthesia are not friends. It tightens up his already stiff lungs and makes asthma and pulmonary hypertension worse. 

Pain doesn't help. 

Soooo, long and short, our same-day surgery isn't. 

On our way to Primary's this morning.

I suspect we'll go home tomorrow, but certainly not tonight. We get to a good spot, we'll hang out in the 90's!!  And then he gets uncomfortable, tight, and decides that breathing well isn't high on his priority list. 

Beep, beep, beep, beep...

But those sounds are the sounds of life, so it's okay.  We'll get through it. He'll go home.  

The good news is that the ears are actually looking okay, and the granuloma inside is trach that I discovered just this morning got taken care of as well.  He's not rupturing his ear drum. Instead, he's got kinda a hollowed out bowl-shaped space down in his ear where debris is collecting.  Most people's ears are designed to self-clean, to push all that junk out. That's why we end up with wax at the opening of our ears. But because of this anomaly, it collects down in there, becomes irritating like a hot spot that your shoe rubs on your heel, and then starts bleeding.  

He'll probably have to have it cleaned out every three to four months, but now that Dr. ENT knows what it looks like in there, we can probably do it in the office.  Yes, Aaron will HATE it, but it also means not dealing with general anesthesia.  

You know, the thing that's keeping us here this time. 

So we got some good information. We know what's going on. And it's not repeated ear ruptures or a cholesteatoma.  And once he gets rid of the after effects of the anesthesia, we'll head home, whenever that happens. 

It's Trisomy awareness month. If you've known us very long, you've heard of it!  But here we go again. March, 3, Trisomy. And I was reminded again the other day how much we all need each other.  As I speak to other moms and realize how much we moms with our non-medical background but our fierce love for our children have impacted the world, I am amazed.  We have serious skin in the game, and what affects one, affects all.  We share the victories and joys and resources, and the pain and absolute anguish as well.  

Trisomy awareness -- Together we can, and will! 

“Unless someone like you cares a whole awful lot, 

nothing is going to get better. It’s not.” 

– The Lorax

Heart Month and Caring For Myself

It's been a bit since I've written, but there's a bunch of "stuff" floating around my mind and it needs to get out. Not sure where exactly this post is going but hey, you've heard that before.  You know, kinda a "been there, done that" type of thing.

So yeah, it's heart month, and Facebook has been reminding me that most years I'm pretty proactive about spreading awareness. Not this year. Not last year either.

This year I keep remembering last year.  And trying not to. 

This time last year Aaron was fighting for his life, literally.  And it seems strange that it's already been a year, and at the same time, only a year ago.  

It's taken a full year for him to recover, mostly, from that episode. He still hasn't regained some of the fine motor skills, but overall, he's doing soooo well (well, minus his ears).

Yesterday he saw Dr. ENT for those nasty ears.  Mid-January that poor right ear ruptured again.  And yet again, and then again...  So the plan is to take him to the ER the first week of March to get it cleaned out really well, looked at really well, and then figure out where to go from there.  Poor kiddo. 

Anyway, so between grad school, trying to figure out nursing issues, med challenges, and then memories, well, I'm giving myself grace. This is not the year I have it within me to promote awareness for heart month.

Aaron has a night nurse now four nights a week.  There have been a few growing pains, but this kid is complicated enough that I'd be worried if there weren't any.  So I do sleep in "my" bed four nights a week and the office bed the other nights.  We make it work. 

We'll see what Trisomy month brings. Maybe I'll get some things done, maybe not.  And guess what? If I don't, that will be okay too. 

Self-care, being aware of limitations, and accepting them.  Sometimes it's hard to give myself the grace I would easily extend to others.  I don't have to do everything.  I'm working on that. 

“The greatest gift you can give yourself is a little bit of your own attention.”

— Anthony J. D’Angelo