Georgia On My Mind

I woke this morning to find my friend's daughter gone.  I don't even know how to process this.

Emilee and I have an interesting relationship.  Most mom friends bond over teething, potty training, solid foods.

Well, Georgia and Aaron both got teeth, but other than that, well...

We bonded at funerals.  Yeah, you read that right.  Funerals.  For small children. Babies and preschoolers that never took a step, never went to school.  I know, bizarre.  It's so beyond the comprehension of most parents, and that's a good thing.  But not for us.  And it was hard, but we were together in this strange, unique club of moms who knew their kids were never going to grow up, but never gave up either.

And now she's gone.

Georgia is a twin (yes, IS, she's still a twin).  Her sister, Eden, is a firecracker!  Their little family has been a force for so much good here in our state.  Emilee spearheaded and fought for the Medically Complex Child Waiver (MCCW) that was piloted for three years and just became a permanent program this past year.  What many don't know is that Emilee created this with others even though her daughter didn't need it, wouldn't be using it. She looked around and saw a great need and worked to address it.  Because of Georgia, Emilee has blessed the lives of so many, so very many people who will never know of the countless hours and tears behind the legislation.  

My heart aches.  I don't know what to do.  I sit here as one single tear keeps running down the left side of my face.  I wipe it, and another takes its place. She's gone.  Her spirit has left her tattered, broken body.  She's free and healthy and dancing like she never was able to do here.  But her family has been left behind, broken, battered, much more by her passing than ever, ever with her care.  I can't imagine, I don't want to imagine.  It just hurts. 

Fly high, little one, dance free.  You have touched more lives in your short time than most will over decades of living.  We won't forget you. 

Click here to watch Georgia and Eden dancing.

Georgia, Georgia

The whole day through

Just an old sweet song

Keeps Georgia on my mind

I said Georgia

Georgia

A song of you

Comes as sweet and clear 

As moonlight through the pines 

Home from “Vacation”

 We did it.  We made it home.

Last week was Spring Break, and I guess he figured everyone else was going on vacation, so he needed to, too.  That or his brothers were trying to get out of work.  My plans included getting some yard work done and cleaning out a few areas of the house.  Yeah, guess whose plans got scrapped.  Oh, well.

Instead, Monday through Friday were spent at his “other home” and the brothers had a movie watching marathon.  I guess if you don’t get to go somewhere, it was a good second choice.

He’s doing better now.  I LOVE the way this kid breathes when he’s on steroids.  Unfortunately, staying on them all the time just isn’t an option.  He’s still having a few siezures here and there, but overall, the Keppra he’s taking seems to have made a big difference.  We finally ventured out today, and tonight he’s pretty wiped out.  Kid better get his beauty rest in.  School starts up again tomorrow and continues at a break neck speed for the next seven weeks.

In other news, his heart numbers have come down a bit.  They’re still not “normal” but from Friday night to Monday night they dropped from 219 to 180.  I’m hoping they’ll continue the trend.  He’s still on the vent 24/7 and I’m not sure how long it will be until he can come off again.  What I do know is that he’s going to keep doing things his own way.  And that’s just fine.

“The thrill of coming home has never changed.“

Guy Pearce

Back Again

A Rough Week

Playing with one of his favorite toys during a brief
awake time this week.

The title kinda sums it up.  It's been a rough week.  On Monday, I reached out to both his regular ped and his special needs ped.  Between the two, we got things moving quickly.

EEG fun

Tuesday morning, he was fast-tracked into neurology.  Wednesday morning, he was having an EEG.  Wednesday afternoon, I saw the report. 

This was an abnormal EEG, awake and asleep, because of excess posterior slowing and sharp waves.  The record suggests a degree of encephalopathy and an underlying, likely focal, seizure tendency.

Yeah, seizures.  And a tired, non-smiley child.  A little boy who usually breathed on his own for eight hours or more a day, who couldn't go without the ventilator for more than ten minutes.  A child who slept for hours upon hours, not waking well, and needing more and more oxygen.
 
Friday evening found us in the ER at Primary's.  I was concerned that there might be an underlying illness or infection driving the seizures.  On the way up, I got a call from neurology.  They wanted to put him on a seizure med, half dose for the first week and then a full dose.

He had to be sleep-deprived for the EEG, so we were
doing everything we could to keep him awake. He
does love the piano.

We spent seven hours in the ER.  It took an hour to get an IV.   Five pokes, and they weren't quick.  Each one involved a tourniquet and looking, and several minutes each time trying to thread the needle and catheter into tiny veins that are scarred and roll.  It wasn't an hour of just hanging out.  It was an hour of pain, and all I could do was hold him, and pray that this time they would be able to get it.  Please don't get me wrong.  These were experts.  They're the ones that can get his IVs.  He's just that hard.

Doesn't everyone hope to spend the start
of spring break in the ER?

Then the x-rays and waiting, and trying to figure out just what the labs meant.  I mean, some of his numbers were screwy, but not by much.  His heart numbers were elevated, but they reached out to his cardio who checked some other values and wasn't too concerned.  

I did get to meet with a friend of mine, one of my "posse" whose daughter takes the same seizure med and has for a long time.  What a relief to talk to her, hear how it works in "real life," what it's like and so on.  I was so nervous, scared, stomach-tied-in-knots before.  I'm still not thrilled that he needs it, but she was heaven-sent on Friday.  I went from "no way, can't do it," to "okay, well, here we go again."  That's a gift that no medical professional could have given me.  Only another mom could do that. 

Leaving about midnight.  At least one of us
got some sleep.

Are the seizures driving his pulmonary hypertension higher?  Is the pulmonary
hypertension pushing his seizures?  We just don't know.  The only way to really look at his brain would be an MRI, but that carries significant risks as well.  He would need to be put under for about an hour.  He recently had pneumonia, which makes anesthesia riskier.  Plus there's the whole thing about him and anesthesia not getting along real well anyway.  I don't think we'll be looking at that, at least not for quite a while. 

He is doing better.  He's still sleeping a lot but not as much as before.  I'm suctioning his trach quite a bit, but it's still manageable.   And when he's awake, he's smiling again.  He still can't be off the ventilator much at all, but I'm hoping we get there.  He's still recovering from the pneumonia.  It's going to take time.  That's okay, he's got it, as much as he needs. 

Twice in the last little bit boys with Trisomy 18 have passed on.  One was almost 12, the other was four.  A reminder of what we will face.  Fielding questions from his siblings.  "How bad is it?  What's happening?  What does it mean?"  Frankly, I really don't know.  I think it's just another bump, pretty sure we'll get through this just like so many other challenges.  But it weighs on me. 

Which brings me to today:  Easter Sunday.  What a blessing, what a lifting of a burden.  Because of Him, I can do it.  Whenever we face it, I know death is not the end, but a necessary step in our eternal progression.  Because of Him, goodbys are not forever.  Because of Him, I am strengthened, upheld, loved.  I am His child, a woman of faith, a beloved daughter. 

 "I can do all things through Christ which strengtheneth me."

Philippians 4:13

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