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