The blessings of so many...

Are being poured out on us today.

I am humbled.

And so grateful.

Sharing this tribute with you...

http://the-scenic-route-momto6kids.blogspot.com/2012/11/henry-angel-among-us.html?m=1

Henry is in heaven and wants for nothing.

Please pray for those of us missing him here.

Henry is finally home.

His ultimate home.

The home where it was my job, as his mommy, to deliver him.

Home with Jesus in heaven.

Rest in Mary's arms with no pain my sweet baby boy.

Or maybe you will be running with a straight back and strong legs, playing ball as the left-handed pitcher you were meant to be.

I will miss you.

I was so blessed to be your mommy .

I know that one day I will see you and you will call out to me...

"MaMa!!"

Until then my youngest boy, my "lucky number 7"....

Until then.

Out...and in...

So I realize I left you all hanging...

We DID get home from CHOP on Nov 15...

It was a glorious week, Henry was so glad to be home, he began rolling again within 5 hours of hitting our living room rug to play with his toys...

I snuggled with my children, went to an amazing dinner and awesome movie (Skyfall) with my wonderful husband...

Did a real estate closing, went to prayer group Tuesday night, was catching up on some other law work (and laundry!) and began preparing for Thanksgiving...

Then Henry started running a fever on Wednesday...

And on Thursday (Thanksgiving) was feverish and uncomfortable...

By Friday he was in outright pain...

So we headed to the ER here at Lurie Children's in Chicago and Henry's white blood cell count was high and his hemoglobin was very low...

And early on Saturday morning one of the incisions on his back burst open and infection came pouring out...

Our surgeon in Philadelphia was consulted and this morning Henry went into surgery to clean out a massive infection all through his back... He has two "wound vacs" placed, one on each side of his spine...He is still intubated right now for pain control and to let him rest a bit... He was in a great deal of pain these last few days which has been very hard to control...

The hope is that antibiotics and the wound cleaning will resolve this infection so we can keep these VEPTR rods in and not have to return to CHOP in Philly...

A dear friend of mine put out a Facebook plea for prayers for Henry, asking our Catholic brothers and sisters to ask their favorite saint for intercession for Henry's healing...

Let me know in a comment if you have lifted up Henry to a special saint who can whisper Henry's name to our dear Lord on his throne...

I will be asking Servant of God Dr. Jerome LeJeune, who discovered the gene that causes Down Syndrome and devoted his life to children with that condition and other chromosomal abnormalities (like my Henry's Larsen's Syndrome)...

We ask for prayers from the living and know God will hear them, so it truly makes sense to ask for prayers from those in heaven who actually see God face-to-face...

So you have your mission!

Henry thanks you!

A light at the end of the tunnel...

Discharge is coming....

Soon....

Yet it cannot come TOO soon!

Henry wants to roll around on his OWN floor with his OWN toys!!!

Fading Fast...

I apologize for the lack of blog updates...

I was nice and busy and oh so happy when Paul and the children arrived Sunday night and Henry left the ICU and was transferred to a regular floor on Monday night...

And then they left Wednesday night.

And Henry needed racemic epi treatments and to be on c-pap Thursday.

And I lost it.

Emotionally and physically hit bottom.

I publicly apologize to every friend and family member I called as a crying emotional wreck that day.

But the good part about reaching out (even though I did not do it in the best way) is that so many responded.

And my tank got filled up on Friday.

And I kept it together through a long weekend.

And thought I could make progress today on Monday...

But there are problems with getting a medical transport home...

We are getting a CT scan and need to have it under general anesthesia... And it got moved back from 8am to Noon...with Henry unable to eat or drink after midnight...

We don't have official orthopedic permission to leave this week either...

*sigh*

I don't have much left.

Pray us outta here soon my friends...

What would you call it???

I don't toss around the word "miracle" lightly...

But when we first got here to CHOP for our pre-VEPTR testing, the docs reviewed the results of a recent sleep study Henry had on Oct. 3 showing severe sleep apnea and multiple desaturations under 90% oxygenation, about 10-15 times a night....

They wanted to put him on a c-pap to deliver oxygen and help get the CO2 out of his lungs the first night we were here...

I fought to not have that happen... because while our sleep that first night documented the multiple desaturations, Henry would rouse or move and a minute or two later his numbers would go back up...

but coming out of general anesthesia (GA) has always been a different experience... all 3 GA procedures in 2012 have required extra meds and/or oxygen to get Henry back to his "baseline"...

In other words, Henry NOT needing oxygen after GA has never happened...

Ever.

Even if the GA was only for an hour for an MRI.

But now...

after 2 days on a ventilator...

after a HUGE 5 hour surgery splitting open his back to insert 2 titanium rods....

Henry has ONLY been on room air...

needing no extra breathing help at all...

always keeping his oxygen saturation over 95%, even while sleeping and even while on pain meds which often
suppress breathing!!!

This is huge!!!

And unexpected.

The docs told me before the surgery that initial VEPTR rod placement usually affects the child's breathing negatively... As the pressures and blood flow in his chest cavity are now SO different...and that children ages 2-7 usually have improved pulmonary profiles post-VEPTR but such gains only come after MONTHS...

Sometimes years...

How to explain my Henry???

I can't.

So I will just thank the Divine Physician.

For yet another extravagant blessing....

like Henry himself.

That moment...

When your adopted child rouses from post surgery anesthesia on a vent searching frantically with his eyes... And his meet yours... And his whole body softens and relaxes and he squeezes your finger and slowly and peacefully closes his eyes again...

Yeah, that moment...

Worth every penny, every sleepless night, every hardship....

VEPTR complete!

It was a 5 1/2 hour surgery...

But we are done and in the ICU.

Two titanium VEPTR rods are now between Henry's ribs and pelvis and a big "gantry" extension comes off one rid and is wrapped around his now separated ribs to make more room for heart and lungs on his left side... Dr. C could not get quite as much correction on the spine as he wanted as H's spinal cord could not tolerate movement past a certain Point...

But we will come back to CHOP for an expansion in 4 months and see if his spinal cord can tolerate some more correction at that time...

Henry will stay on the ventilator for a while... We also received some bad news about his airway and future treatment needed that I am asking continued prayers for...

It is pretty brutal to see your baby boy struggling with all 4 limbs against restraints with a tube down his throat and a bloody line in his neck while he cries huge silent tears until the next round of pain meds kicks in...

So both Henry AND his momma is begging your prayers too on this All Saints Day!

Thank you all and I will keep you posted!