Tuesday, April 17, 2018

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. 

Georgia, Georgia
The whole day through
Just an old sweet song
Keeps Georgia on my mind

I said Georgia
A song of you
Comes as sweet and clear 
As moonlight through the pines 

Sunday, April 8, 2018

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

Sunday, April 1, 2018

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