Friday, October 21, 2011

Run Over

by a bus.
a moving van more accurately.

This my friends,
this is an update a looonnnnnggg time coming.
incredibly sorry that it has taken me this long.

We came home last Friday,
a week ago today I am just now realizing.

I walked into a base house that we now live in
but that I had never been in before
with stuff that I hadn't seen in 4 months.

New child.
New house.
New recovering child with a new house that needs to be set up.
Oh my.

So how about an update via bullet points?
Giddy up
Here we go.

  • He's doing GREAT. 
  • The first 24 hours home I had one foot out the door with my purse on my shoulder about to take him to the local ER. He didn't look good, he didn't seem to feel good, he could barely move around. I kept packing up and then rethinking it. He would look a bit better, then worse. Then better, then worse. It was indecision at it's finest.
  • I held off and sure enough around day 2 he started to perk up.
  • He's doing GREAT. 
  • He had a hard time sleeping the first four nights. He told our translators over the phone that he needed the nurses and doctors. Oh bless him. That was heartbreaking. The other nights I think the enormity of his new life was catching up with him. Last night he slept all night.....hence the blog post today. :) 
  • Physically he looks incredible. So, so much stronger than I have ever seen him. 
  • He slept all night.
  • He slept all night.
  • He slept all night.
  • He is the sweetest little boy, with the cutest little voice. He has no trace of an accent when he speaks English. It's the weirdest thing I have ever seen. Perfectly formed English words coming out of that mouth. 
  • Jacob's Mandarin abilities have come back in full force. There is now English, Chinese, and Chinglish(Joey) all around our dinner table.
  • His transition home has been nothing short of remarkable. Sans the no sleep it has been amazing. He literally walks around all day smiling from ear to ear. He knows this is love, he knows this is life, he knows he feels better. It has been an incredible thing to witness. He.Is.FREE.
  • I feel like I am living in an episode of hoarders in the upstairs hallway. I've gotten 3 out of the four bedrooms set up, downstairs almost complete and a storage shed under the house that I haven't summoned the courage to open yet. I think the minute I see all the boxes that still await me I may just curl up into a ball and rock back and forth. 
  • He's smart, inquisitive and is very used to having a staff of nannies follow behind him and clean up his mess. We are....ahem.....working on that last part. 
  • In 3 days he will have been in America for one month. The 20 days in the hospital feels like a bit of a time vaccum so I would swear he's only been here a week.
  • I can't spell vaccum. 
  • Vacuum. 
  • Oh look. 
  • I did it. 
  • Thank you spell check.
  • The other boys are completely smitten with him. If you are considering adoption but worried about what it will "do" to your other kids, letmetellya. It will change them. It will change them forever. For the better.  It is by far the best thing we have ever done. We sit across from a table each evening listening to two teenage boys talk to three Chinese boys who 9 months ago were all orphans. Who they now get to love on and play with and talk to. It is remarkable. It has made an eternal difference in their lives and in their perception of this world. HIS world.Hands down adoption has been the best parenting decision we have made.
  • Joshua goes back for his first post op check up on Thursday. But in my own largely uneducated medical opinion, it's all systems go. He's doing amazingly well. 
  • He begs to go to school each day. 
  • We are working on that.
  • His new pulmonary valve sits directly on top of his heart. It beats out of his chest. No really. It beats out of his chest. You can visibly see it and feel it. And the only thing separating that valve with the outside world is his skin. And since he is so malnourished there is no fat, no muscle, no nothin protecting him from certain death should he sustain some impact or injury to his chest.
  • This scares the life out of me. 
  • I am heading to a sporting goods store today to see if I can find an under armor football shirt or something that will at least give him a bit more protection. 
  • My dilemma is this: Keep him in a bubble safe at home by himself, or let him live his life. Let him be. Let him go and do and play just like everyone else. I can't treat him like an orphan his whole life, I can't treat him like a sick child, I can't treat him like he is different. He just wants to be him. He wants to run around with his brothers and for the first time in his almost 8 years on this earth he is able to. This is my predicament.
  • We.
  • Are.
  • In.
  • Love. 
  • I am still amazed at all that has transpired in the last month. He is our miracle. He is our gift. 
  • He.Is.Our.Son. 
  • He slept all night. 

More updates coming soon, I promise.
I will never
be able to adequately express to all of you what your support has meant to me.

You have carried us for the past year.
Your encouragement, your financial help in raising the ransoms of 3 kids who now call me mom, Team Joshua, the dinners, the care packages at the hospital, the unending emails and text messages, the unpacking of this house, I'm tellin ya
we stand amazed.

You have poured out such love and blessing on us and never will I be able to tell you just how much that has meant to us and what a difference you have made.
Joshua and his story is such an example of love. poured. out. Of the body of Christ working together.
Thank you for loving us
thank you for loving him
thank you for making a difference.

We are ever

Wednesday, October 12, 2011

A Lil' Bit Flat.

Funny thing happens when you step out of your normal life for round bout 20 days now.


And I miss it.

I miss the getting the kids up in the morning and handing them a frozen waffle
making a steaming hot, homemade from scratch breakfast every single morning.
Cuz ya know
I totally do that.
Or something like that anyway. 

Taking care of just one child these last few weeks has been
One kid?
I don't know how to do one kid.
Meals delivered to his bedside?
People come in to clean his room
to change his sheets
to care for him?
What. The. Heck.

I am ridiculously excited for real life again.
Even with the incessant cleaning
the cooking
the sibling arguments
the homework
the pee on the bathroom floor
the pee on the bathroom floor
the pee on the bathroom floor
I'm tellin ya.
I miss it.
I miss all of it.

I miss driving them to school.
And going to soccer practice
And baseball games.
And cooking dinner.

And I miss my friends.

So imagine my delight when my phone beeped with a text yesterday and it was my sweet friend Julee.

And check out what was staring back at me

Flat Sonia.
Flat me!

So now I can once again have coffee with her
I drink coffee.....she drinks water.
The nerve.
Somehow I still immensely enjoy her friendship.

I can imagine I am back in real life doing laundry

doing dishes

I'm tellin ya.
The fun. 
The fun I miss.

In other news, 
Our big little man has made quite the turnaround in the last 24 hours ever since that last chest tube came out. 

The doctors just finished rounds and words like
"Possibly as early as Friday"
have begun to come out of their mouth. 
Oh happy 

Tuesday, October 11, 2011

Chest Tube Removal Joshua Style

Didn't see that coming.

Joshua is on the 'roids now and has been for about 24 hours.
His adrenal glands are the latest organ to take the reprofusion hit.
Let's just say that the steroids have made him the slightest bit....

A lot cranky.

So when yesterday evening round about 9pm rolled around and the respitory therapist came in to strap him into his vibrating vest to shake that junk out of his lungs
he began to cry when she turned it on.

It was at this point that I thought two things:

1. Ugh. Now he is crying over the vest. Seriously.
2. That's weird. He typically loves the vest.

Me being the horrific mother that I am sat at the end of his bed,
patted his leg and reassured him through his tears that it was ok
he was ok.
It's really just the vest.
It was at about minute 12 that I really took notice that the vest was vibrating much harder than before.
And it was at minute 13 of a 30 minute treatment that I got up to look at the setting and found it to be at 60%....which is the highest setting
instead of 40%
where it has been the last 3 days.

I turned it down to 40%
because I have absolutely no medical training nor authority to do so
but I'm his mom
so I felt qualified.
Thus I did.

But still he cried.
And moaned.
And whined.

Finally 30 minutes was up.
We unsnap the top part of the vest and immediately I noticed that there were imprints on his chest from the vest. It was obviously on way too tight. Whoops. That had to have been uncomfortable for someone whose sternum was cut in two a week ago.
Then we unsnap the next buckle and I notice the guaze and tape that covers his chest tube is soaked in blood.
Then we unsnap the last buckle and I see the top part of his chest tube that has previously been filled with draining blood and fluid
is now clear.
Crystal clear.
And then I heard it.

It was at that point it became very obvious very quickly that his chest tube had been partially removed by the vest and excessive vibration.
He was not being grumpy
homeboy was in pain
incredible pain.
I suck.


2 hours
3 xrays
one mega plastic seal to stop the air intake
and 4 decisions later
they pulled it.


All of the fluid that was still draining has to go somewhere.
According to this mornings xray it is beginning to collect in his lungs.
So they are watching him closely today to see how quickly the fluid accumulates compared to how quickly he is able to rid himself of it.

It's a dance for sure.
1 step forward
5 steps back
swing your partner round and round.

Day 17.
Can't wait to get off this dance floor.

Monday, October 10, 2011

The Plan

Slowly more
and more
and more
and even more
tubes and wires are disappearing.
so nice.

It's day 16 here in PICU paradise.

He is doing so
so much better.

There are some issues they are still working on.
His lungs are still angry
he is still dumping way too much fluid out of his chest tube
and some of his levels
blood pressure
are off.
Way off.

By far at this point the most pressing issue is that his one remaining chest tube continues to dump out fluid.
That's not good.
At 6 days post-op it should already be out...
long ago.

Today during rounds the talk became that if that drainage(the source of which is the fluid around his heart)
does not being to taper off
they may need to do another heart cath
to take a look see and make sure there aren't any remaining collaterals that are still trying to live on
which would explain the bleeding/fluid output.


Another cath means another intubation
another day of anesthesia
another day of puke from the anesthesia.
Just when we have gotten him to eat and drink
and keep it down
we may have another 24 hours of yuck.

No decision has been made yet
they are going to give him another day to see what happens
but it is becoming more and more apparent that something is going on.

In better news,
with each xray his lungs look better

are they not the cutest little lungs you ever did see?
Let me show you the outside picture of those little lungs:

Now you can see the cuteness.

This is day two of sitting in a chair.
He is ridiculously excited about this
as you can plainly see.

Maybe not.

We had quite the drama yesterday morning when after morning rounds the doctors moved on down the hall when he suddlenly started going

His oxygen levels which had
10 seconds ago
been at 94
began dropping
Not good.
The alarms were once again ringing and his itty bitty room was full of people again.
His surgeon
His cardiologist
every resident and nurse on the floor.
and down
and down
After an intense few minutes someone finally figured out that the respitory therapist that had just been in had accidentally turned the oxygen valve in the wrong direction....
she turned it off instead of increasing it as they asked her to.
Alrighty then.
So now we know that he is not yet able to maintain adequate levels without the use of oxygen.
I'm not sure that's the way we wanted to find out.
But we know.

It does strike me as incredibly ironic however
Pre-surgery we would have been jumping for joy to have levels of 69!
But now that all is fixed/patched/rewired he should be able to....
or will be able to
maintain more "normal" levels in the mid 90's.
But right now his lungs are just not cooperating fully.

So that's the what's what.
MUCH better.
If I was betting lady I'd say home Friday?! Saturday?

But if they have do another cath and shut down some collaterals then all bets are off.
Boo to the hoo.

Sunday, October 9, 2011

Big, BIG News.

We slept ALL night.

Just thought I'd share with you how I feel about that.

I feel like a million bucks.

To celebrate 
we are starting our day sitting up in a chair!

So from us well rested individuals to you,
hope your day is fantastic!

Saturday, October 8, 2011

Meanwhile, Back at the Ranch.

Stomach bugs have invaded
and seem to be picking off our children

Almost puke.

And did I mention we move into our base house on Thursday?
We move into our base house on Thursday.

Admist all the chaos this just happens to be the time that a home for us has opened up.
Good times.
Good times.
I am so, soooo thankful.

you must know
John is manning the unpacking and setting up of the house since I am here
and he is there.

This could be bad.
There isn't going to be one ruffle
or one piece of lace
or any flower all up in there.
It's going to like living in a frat house.

I can see it now....
Sports pennants hanging up in the living room
Giant pretzel tubs serving as end tables
Fooseball table in the kitchen
Video games wired into the bathroom

Guess I'll put that on my list of things to sort out once we are home.

I think at some point I will just fall into bed and sleep for 2 solid weeks
Not now of course
but I will add it to my calendar.
Nap October, 2019.
Got it.

Friday, October 7, 2011

A Lil' Bit of PINK has arrived up in here

I CANNOT get over how great he looks.

When he came up from surgery on Monday I gushed over his pink fingernails
his pink toenails
even his now pink ears.

But what I couldn't really see

So many tubes

I'm tellin ya
homeslice was covered. 

But now.

I have caught my first glimpse of the real Joshua.


The difference is incredible.
I heart pink.

This is day 13 in the hospital.
The first few days were filled with the questions of
Can they save him?
Then heart cath day rolled around and we rejoiced.
Then we waited until surgery day.
Then the last 5 days have been consumed with getting him over all of the reprofusion injuries
but today
Today is a great day.

After 13 days I finally feel like I can take a deep breath.
He's here.
He's alive.
Surgery complete.
His heart is good to go for the next few years
We appear to be over the hump

So today,
today is a good day.

This is the day that the Lord has made, I will rejoice and be glad in it. 

Extubating Today!

5 days post surgery and he is finally stable enough to extubate.

I feel like I could do cartwheels down the hallway.
Hold on.
I think I will.


I'm back.
I did half a cartwheel
realized I'm not 10 years old anymore
and me and my graying hair decided not to attempt another.


I am super excited.
He is going to be so much happier.
Beginning yesterday his little countenance just kinda went down.
You can see it in his eyes as tears pour silently down.
He is giving up.
He has resigned himself to the fact that this is his new life.
Forever lying here with a tube down his throat
breathing through that straw.


I'll share some pictures later today after it's out.
I don't want to post any of him in his current state as I'm not sure he'd appreciate that 10 years from  now.
But alas, there will be a cute little mostly tube free face coming to a blog near you soon.


Wednesday, October 5, 2011

Taking a Breath

to update in blog land.

The last 3 days have

It's been up
it's been down
it's been down more
and more
and more
and more
and up
and down.

I don't like roller coasters.
They make me puke.

To recap as well as my brain possibly can
the surgery went well.

We got word that he was off bypass and that he should be coming up soon
but then nothing.
After about an hour we learned he had to go back on bypass so they could make adjustments
and finally after leaving his room at 7am he wheeled back on in around 5pm.

Since then it's been all over the place.
We have learned some things about our little Asian Sensation.
He has a VERY high pain tolerance
and sedatives have pretty much no effect on him.

He was intubated
writing perfect Mandarin characters asking for a drink and some peanuts
requesting to go for a walk
and mad as a hornet that a tube was down his throat.

Long story short after going to battle with the staff here for hours
they stepped out of his room for a minute
I laid down to try and grab a bit of sleep
opened my eyes 15 minutes later to find all the alarms going off
and 15 people scurrying around his room.

I thought we were losing him.

Turned out that he decided to take matters into his own tied down hands
and extubated himself.
Hoodini managed to get out of the restraints and he pulled that tube right on out of there.
The nurse walked in to find him wide awake with the tube dangling in his hands.
Not a good moment.

Long drama short
he just wasn't ready.
He is now having what is called "reprofusion injuries".
His body has never ever seen this kind of blood flow and oxygenation and to suddenly be introduced to that kind of flow is very hard on all of his tissues.
Reprofusion injuries can manifest themselves in any of your tissues/organs.
His has appeared in his lungs
and then today in his liver.
Both of which are not doing well.

He became progressively worse over the day Tuesday and by 3 in the afternoon the entire team was once again hovering in his room when things went from bad
to very bad.
Faster than I could blink they had his bed down and were intubating him again.
It felt like we had just started over.

Longer drama shorter
he's been intubated now for the second go round for about 24 hours
he looks much
His body was kinda pooping out from working so hard to ya know
stay alive.
So today has been a day of rest for him.
They found a magical cocktail that seems to have done the trick and he's chilaxin.
The plan now is to try extubating again on Friday.

We were sailing right along today until his liver decided to have a little pity party this afternoon.
They just came in to do an ultrasound and the liver people are on the way.
Whatever the heck that means.

Regardless, I'm his momma.
And even better?
He knows it.
He reaches for me
He squeezes my hand
I tuck him in and sing him songs
we're besties.

So here I am.
Hanging out with the cutest 7 year old Chinese boy I ever did meet
whose color is no longer blue....

but PINK!


Monday, October 3, 2011

He's off Bypass!

Giddy up.
Here we go.

The scurry rate outside and inside his room has increased exponentially.
So here I sit.
Blogging in a vain effort to keep my mind distracted less I dissolve into a pile of sobbing goo.
My fingernails are long gone
I have compulsively organized all of his clothes and toys
I may have to chew on someone else's fingernails to rid myself of this nervous energy.
Never mind.
That's gross.

They are putting in the chest tubes, closing him up, doing an echo and getting him all ready to be sent upstairs.
Our sweet boy will arrive back into the PICU in about an hour.  

Never have I been this nervous.
Not having a baby
not having twins
not adopting

Things are about to get a little bit interesting up in here.

So thankful that HE has gone before us in this
because really,
I have no stinkin clue what the heck I am doing. 

And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:7

His BIG Day.

I woke up early this morning
grabbed a cuppa coffee
and sat and prayed over this sweet boy while he slept.

SUCH a conflict of emotion.
Part terrified
part thankful that he has the opportunity for today.

They just called with the first update.
He is on bypass now,
so far
so good.

I seriously cannot wrap my brain around all that is to come.
No matter how many times they come in here and ask if I am prepared for what he will look like
I cannot fathom it.
The swelling.
The bleeding.
The tubes.
The wires.

I have tremendous peace at the moment and I know he is being bathed in prayer from across the nation.

(And so is Captain America)

Sunday, October 2, 2011

I Hit It.

I hit the wall.


Today is ummmmm.....
I don't know.
Some day or other.

John and I switched on Friday night
he brought the boys up to say hi to Joshua and we partied like rock stars.
We ate in the cafeteria for dinner
played in the playroom
and ran all around the 200 sq feet that is JJ's PICU room.

That's us.

I came home with the other 6 and John stayed up there with Joshua this weekend.
I walked into our home at around 11pm
managed to half heartedly tuck the kids in bed
and then collapsed on my bed.
Fully clothed and on top of the covers.
I slept that way all night.
I'm guessing I was a teensy bit tired.

It's Sunday afternoon and I am about to head back up there to switch back.
I miss him.

He was doing fine and we were in the honeymoon stage of our hospital stay.
The cath was over
we had the result
and we were kickin it in the hospital having as much fun as one can possibly have there.
And then Friday night his heart had some kind of horribly irregular arythmia that brought the doctors and nurses and the alarms going all up in his room in the middle of the night.
It yanks you right back into reality to remember how fragile he is.
They have now put the kabosh on our visits outside the PICU.

Tomorrow is the big day.
It's way more than my brain can really take in.
They are replacing his missing pulmonary valve with the jugular vein of a cow or a pig
closing his large VSD
and closing the duct that kept him alive all these years. 

Surgery is expected to last about 7 hours.
They will wheel him down to the OR around 7am
and then we wait.
And pray.

My heart is divided.
Part of me is rejoicing that this is happeneing as the alternative is obviously devastating.
But the other part of me is terrified for all that is to come in the next few days with him.
And the third part of me.....if that is even absolutely heartbroken that dear friends of ours have not received the same good news regarding their kiddos diagnosis. 

It's been a week.
A long
long week.