Thursday, March 23, 2023

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

Sunday, March 19, 2023

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

Friday, March 17, 2023

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!  



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.


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."

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.  

Thursday, March 2, 2023

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

Friday, February 10, 2023

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

Sunday, January 22, 2023

Hitting the Sweet Spot

We're doing it.

He's doing it.

I've wanted to write this for a couple weeks but was worried about jinxing things.  

He's sleeping.  He's playing.  He's pooping (yeah, that's a big deal).  He's getting stronger.

He doesn't nap much at all, as opposed to taking three or four (or more) naps per day.

His smiles are back.  So are some laughs.  

It's working.

I think we've finally figured out a good combination of GI meds/food/activity/other meds.  

He sleeps with swim goggles on to help his eyes not dry out as much and the eye surgeon feels that the drainage is a natural reaction to the irritation caused by sleeping with his eyes open, and not an infection.   

His right ear did rupture again! so we're treating that, but otherwise, I've pulled seven doses of medication off his daily schedule.  That's a lot!  He does still get 46 doses/day.  But even removing those seven (eliminated two meds entirely and reduced another from three to one dose) is a big deal. 

And it's making all the difference.

We still don't have night nursing except for the occasional time when one of my school nurses also works a night shift.  Last weekend, Michael had a couple wrestling friends come over and they rearranged my office furniture so I could put a bed in here.  Aaron actually seems to be doing better with the longer block of dark, no fussing with him, no meds time.  We're making it work.  I'm building the routine so that I don't have to think through every step every morning.  We're doing it.  

School has started again for me, and there's a lot going on there.  When I stop to think about everything, I get overwhelmed.  Sometimes I'm overwhelmed even when I'm not thinking about it. But I'm trusting in God that He will see me, see us, through this.  

This week I got tired of listening to the news and switched to a favorite artist, The Piano Guys.  They play a medley of "Fight Song/Amazing Grace" which really speaks to me.  This is my fight, but only with Him by my side.  

This is my fight song,  
Take back my life song, 
Prove I'm alright song

Through many dangers, toils and snares
I have already come,
'Tis grace has brought me safe thus far
And grace will lead me home. 

Cause I've still got a lot of fight left in me.

The Lord has promised good to me
His word my hope secures;
He will my shield and portion be,
As long as life endures.

And then, because that wasn't enough, a couple songs later "Okay" came on.  That has been MY song for years.  

And there is a battle raging in your heart but you must winIt comes for all of us, saying we are not enough.So fight for your life! The world's gonna tryTo sell you some lies

No matter what you've been through, here you are!
No matter if you think you're falling apart
It's gonna be OKAY!
I turned that song up, way up,  and sang along, through the tears that somehow surprised me.  It is okay.  It will be okay.  And it will be a very good okay.  Seriously, try the link.  Hear the song. Believe in yourself!  Because we are enough.  We've all been through hell of one form or another, and we're still here, kicking it, falling apart, and then moving on again.  Sometimes happy, sometimes sad, sometimes beyond devastated and broken.  But still trying, running, walking, crawling.  Whatever it takes. 

"I can do all things through Christ which strengtheneth me."
Philippians 4:13

Sunday, January 8, 2023

Happy New Year!

Well, let's see what 2023 brings!

I have to be honest, 2022 was a rough one.

Aaron had a rough year.  Autonomic storming started right about a year ago, but it took almost dying in February for any of us to realize what was happening.  That also led to some increased seizure activity and contractures in his ankles and feet, all of which meant adding in more meds.  

He's had pretty constant ear and eye infections.  

And then in November, his gut went on strike. He started having issues back in August, but they really came to a head when he developed an ileus, which is where the gut muscles decide they're not interested in doing their job.  Usually that takes 48-72 hours to resolve.  Two to three days. My little overachiever decided three weeks was a better timeline.  Sigh...

In addition, I've had some of my own health challenges with my gallbladder and some other gastric "fun".  Plus apparently, I have mild to moderate sleep apnea.  I think maybe what I have is just plain ol' no sleep, but whatever.  

However, 2022 also brought some good things. We discovered in February (just before he tried to die) that Aaron had a hole between his artery and vein in his right groin area. Fixing that in September did amazing things for his circulation and his heart. He had a heart cath in July that relieved some of the pressure on his heart and lungs by widening his PDA.  He got a new ventilator the end of July that has been a complete game changer!  I mean, we've been tolerating sats down to 77% because on the other vent we were running 6-10 liters of oxygen just to get to 77%.  Now he's usually on 2-4 liters and in the mid to high 80's and sometimes even low 90's! Like I said, game changer.

In fact, those three:  his heart cath, surgery and new vent,  probably are the reason he is still with us today.  Tender mercies.  

I've been able to keep up in school, somehow, through all of this.  I love my program, although it demands an incredible amount of emotional energy and introspection.  I've learned a lot about myself, including that I can do things I never thought I could.  If you'd told me I could go without eating sugar for 15 weeks,  I'd have thought you'd lost your mind! But I did, and if I could do that, I can also do other things I'd never dreamed of.  

This year is already bringing some challenges.  We no longer have any night nursing and I don't know how long that will last. Our last agency discharged us while we were in the hospital and the story is that it's too hard for them to work around our hospitalizations and they don't have staffing for us.  They did contact a friend of mine and offer her staffing the end of December so that's odd.  I don't know the real story is, but in the end, it really doesn't matter.  Long and short is that we don't have anyone at night for Aaron.  He does still have school nursing though.

So I am now sleeping in the office on a mattress across from Aaron's room. I've slept in my own bed a grand total of six times since November 29th.  But we're making it work. I've revamped his medication schedule so I can get about a six-hour block of sleep (if everything goes right) and I think he may be doing better, too, without being given meds, etc during the night.  So that's a positive.  

But honestly, I'm praying (really, it's a matter of daily prayer for me) that I'll be given the strength I need to do what needs to be done.  I'm glad I didn't know what 2022 (and 2023 so far) would bring before I went back to school, because I probably wouldn't have done it.  But here I am, almost done and it has been a really good experience.  

In the Book of Mormon, (Mosiah 24) there is a people that's been enslaved that pleads for deliverance.  Instead of being freed, God strengthens them so that their burdens become light. I know He does help us and I'm grateful for all the strength our family and I have been given over the past almost 13 years.  But now, these latest challenges, they seem even bigger and more insurmountable.  So I'm praying for strength to be able to do my schoolwork, care for Aaron, and still take care of everything and everyone else here at home.  I'll need His intervention and help.  But then, I think I always have needed it. Fortunately, He's always been there. 

God understands our prayers 
even when we can't find the words to say them. 
~Author unknown