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 win
It comes for all of us, saying we are not enough.
So fight for your life! The world's gonna try
To 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

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

Christmas 2022

We're here, we're home. 

Home for the holidays (mostly).

I feel like I missed December, pretty much did.  

We put up the tree the day after Thanksgiving (of course!) and were admitted the next Wednesday, only five days later.

Came home on the 21st, so just 4 days before Christmas. 

Yep, missed most of that.  Missed making cinnamon roll bread for teachers and neighbors.  Missed the nightly advent stories and songs.  Missed the music and church services. 

But we didn't miss Aaron.  He's here.  Another Christmas with him here with us.  

As I walked the halls at Primary's, I looked around at those who were also there. The ones clinging to hope, the ones who were trying to find hope.  And the ones for whom hope was fading. 

It's a bittersweet experience being at the hospital during the holidays.  Staff know it's hard and they try to empathize.  Community rallies and donations literally pour in:  stuffed animals, blankets, toys, meals.  But still, you're there, where you'd rather not be.  At the same time, you're there with your child, who is still living, when many are not. 

I sat with a family as they lost a child.  My own frustrations and worries faded as I held Mom. I don't think I said much.  What could be said? Nothing would make it better.  My own heart ached so much for them.  

Aaron came home with me. Their child did not go home with them. 

Christmas here was a bit different.  We got up and had breakfast, and then Jonny and Avanlee called with Elend from Germany where they were enjoying Christmas. After that, it was time for those going to church to get ready.  When they got home, Andrew called from Arizona.  I treasure these video connections.  It makes missing them here a bit easier.  Then, finally, we got to the presents.  In the past, breakfast has promptly been followed by presents, and waiting until 7:00 has been torture for me.  My husband kept trying to figure out what had been done with his wife and who I was in her place.  But this year, this year I wanted to savor the experiences, and it was beautiful.  Even sweet three-year-old Linnaea was so incredibly patient and engaged, more so than I think I was when I was ten times her age.

As I've contemplated Christmas this year, I'm drawn back to the first Christmas.  There weren't a lot of lights and clamor and presents.  There certainly weren't treats and parties. I think of Mary holding sweet Jesus.  She knew, and yet she didn't know.  She couldn't have.  He was still with her, tiny, helpless, in her arms.  She was warned by Simeon that it would be as if a sword through her own soul.  Yet, she didn't falter. She loved and she taught, protected and served. Her gentle soul sought God's will for His son.  

So I guess, in the true spirit of Christmas, we didn't miss anything. We have family and love and everything we need. Aaron is (very slowly) starting to improve.  He's still tired, oh so very tired. His feedings are progressing much slower than I'd like them to. He's still fevering, but it's low grade (100.4-100.9).  He has an eye appointment tomorrow morning to check on the infection that has plagued him for several months now but flared even more during our most recent stay.  It's hard for him right now. I am hopeful that things will improve and his spunky spirit will return. 

But in the end, regardless, he is ours. Our son. And we've had another year where Tiny Tim's crutch is still needed, still used, still loved.  God bless us, every one. 

"...It might be pleasant to them to remember upon Christmas Day, 

who made lame beggars walk, and blind men see." 

— Bob Cratchit

Home Again, Home Again, Jiggity Jig

Okay, maybe not as fast as jiggity jig.

In fact, we've been here three weeks today, total of 22 days, a tie for our longest stay.

BUT we're heading home.  Need one final consult with ENT and an oxygen tank and we'll be gone.

So grateful to be home for Christmas, just to be home regardless of the season.  

He is still so very tired.  I'm hoping we see him perk up once he's back with family.  He still needs continuous feeds. I'll work him back to baseline at home.  But he no longer needs IV antibiotics or fluids. He's way down on his oxygen and his vitals haven't looked this good for WEEKS!  Like just after his last surgery where we fixed the hole between his femoral vein and artery.  No fever for the past 24+ hours. 

It's time.

Yay for home, for family, for Christmas.  

I'm so grateful to be taking him home.  Stays like this make a mama's heart and head go places they shouldn't.  We are so thankful for his continued presence with us this side of heaven.  It's a gift I don't think I will ever take for granted.  A precious gift denied to many others.  I don't know why some stay and some don't.  They are no less loved and cared for.  And missed.

“What is Christmas? It is tenderness for the past, 

courage for the present, hope for the future.” 

– Agnes M. Pahro

Stutter Steps

You know that movie, Groundhog Day?  Where the day just keeps starting over again?  Bill Murray can't quite figure out how to get out of the loop?  Yeah....

I did put up a Facebook post a couple days ago but honestly, recapping that wouldn't give any new info.  I mean, Groundhog Day. 

We start his feeds slow, work our way up sloooowly, and then hit a roadblock.  Usually it's a spiking fever, higher heart rate, lower sats, or a combination of the three.  Plus his girth goes up substantially. Yeah, they measure his tummy pretty often.  So then we have to stop giving him anything through his g-tube.  

Over and over and over again.

What we know: his white blood count (infection fighting blood cells) trend up when he struggles. He fevers, sometimes as high as 104.7 (YIKES!). He gets more tired. His red blood cells, his hemoglobin (part of the red blood cells that carries oxygen) and hematocrit (percentage of red blood cells available) have all been trending downward.  Interesting and maybe pertinent, his thyroid levels are actually high instead of low or normal like usual.  And he's not tolerating food in his belly/intestines/gut/whatever.

So after being pretty sure we've knocked out whatever bad bacteria there is with two weeks of big gun IV antibiotics, and trying most everything else, he's now getting blood.  His cardio really likes all those red blood cell markers to not just be in the normal range, but at the upper end because of his heart issues.  Somewhat of concern is that vitals wise, he's looked pretty good so we didn't want to upset the hemodynamic balance.  The conclusion we all reached together is that at this point, the possible benefit outweighs the risks.  

So here's hoping that bag is a bunch of red pixie dust running into his veins.  He's responded well to it in the past.  And right now he's already looking a little more pink.  

Maybe we've found our magic ticket out of our loop?

When the world says, "Give up," Hope whispers, "Try it one more time." 

~Author unknown

Still Got Work To Do

Still here. 

Still trying.

Still struggling a bit.

He is reaching his 24 hour feeding goal, but we're just getting there.  It's kinda been fits and starts.  Next will be to try to condense it down to daytime feeding and then individual meals. 

He finished his week of IV antibiotics on Wednesday.  Thursday his body, or at least the bacteria, said, "wait, I'm not done.  I'm still here and kicking."

We discovered that on Thursday evening, night, and early Friday morning.  

You know how when you do (I don't do) cardio exercises the goal is to get your heart rate up?  Um, not supposed to happen when sleeping.  He was at 120's in the evening, progressed to about 150 beats per minute at midnight, and then at 1:30 am he decided to go all out and hit 170.  Asleep.  Not so great.

So once again, a rapid responses was sent out.  Fortunately this time, the team came up, evaluated him, pulled labs and did x-rays, and decided he didn't need to make the trek downstairs.  They did restart IV antibiotics again and we pulled more cultures.

So now his ear, his eye, and probably his trachea are all infected and they figure he needs another week.  We even did a CT scan to get a really good look at his ears, and yep, still got "stuff" in there.  Our new discharge goal is for Saturday.  

In the meantime, he's tired, so tired.  Labs also showed that his hemoglobin and hematocrit are both pretty low.  They were on the low end of normal when we were admitted but they've dropped quite a bit since then.  So we're having the discussion about whether to start iron or transfuse, or what.  Hemodynamically (blood volume, profusion, blood pressures, oxygenation) he's looking pretty good so there's concern about upsetting the apple cart by putting more volume in.  But at the same time, his bone marrow isn't currently putting out the cells it's supposed to be.  

Which, incidentally, can influence the gut response.  Remember the old gospel song, "Dem Bones"?  Yeah, it's all interconnected.  Ear, eye, and trachea.  Blood, oxygen levels and everything.  Sigh...

So anyway, that's where we are.   

On another note, I'm done with finals and have a few more hours I need to put in at my internship this week.  Then I have a break before next semester comes at me.  Last one!  

In the meantime, we'll just keep on working on getting things sorted out. 

"Every noble work is at first impossible."

Thomas Carlyle

Movin' On Up

He got out of the PICU today.

He's spent most of his time since Saturday afternoon asleep.  But it's been a good sleep, a healing sleep.  Yesterday his heart rate and respiratory rates were still a bit high, but today they're down where they should be.  

His gut continues to move along the way it should, and tonight his girth measured about 64 cm.  That's down from the 77 cm at the worst of things.  Yeah, he was that big and swollen.

So tomorrow we'll start introducing formula again, very slowly. 

He's still got a ways to go before we get out of h
ere.  Right now the thinking is that he needs to be back to full feeds and hydration for a couple days, to make sure he keeps on the right path, before we make it home.  

So here's to boring days, full of not much and just working on feeling better.

Fingers crossed....  

It's no coincidence that four of the six letters in health are "heal." 

~Terri Guillemets