4-everQuist

Wednesday, November 27, 2024

Jammies and fuzzy slippers

We have a tradition of getting new jammies and fuzzy socks/slippers for hospital stays. Fortunately, we did not need to stay overnight, but we still wanted to wear our new jammies at home today. Lots of PlayStation games and homework today. We channeled the good vibes of Grandpa Quist and got Sev some old man jammies ;)

Tuesday, November 26, 2024

Home!

After a 3.5 hour drive home through traffic, rain and snow, we are DONE. We stopped by McDonalds for an Oreo McFlurry for him, he ended up eating two cheeseburgers, chicken nuggets, fries, a McFlurry, and a Sprite. We jammed out to some music, picked up a PlayStation from Austin and Morgan- Austin generously let him borrow for his recovery, kept Carmen for a sleep over, and the Dude passed out. We have had a long day. Grateful to be home together, safe, and healing.

Peace Out!

The narcan made the difference, Sev was able to hold down a few crackers and sprite, Chest Xray looked great, we are cleared to go home. I asked for a 'normal face' this is what I get. So Thankful everything went smooth and 'according to the plan' today. You know how I like a good plan!

Still barfy, but more Awake

Sev has not been able to hold any fluids down, The Anesthesiologist came by and tried some narcan to reverse any remaining fentanyl. Next up is a chest X-ray. and holding down fluids...

The IV was a little rough

Two tries and the IV Magician couldn't even get it, the anesthesiologist had to place one in the Cath lab

On the other side of the Heart Cath

Lots of nausea, throwing up, chest pressure, headache

Flawless Heart Cath, Perfect Pressures, opened his stent from 10 to 14, He has a good crappy heart. Fenstration is still open a tiny bit-hence the good O2 Saturations. Hopefully this will be the tune up his heart needs to give him back his energy.

He is in the Cath Lab

It is a little different handing him off to the Anesthesiologist. He didn't even try to ride in a Coup Car

Hops right in like it is no big deal. Dr. Gray says it will be a few hours.

The Day I Became A Heart Mother

One day my world came crashing down,
I'll never be the same.
They told me that my baby was sick.
I thought, "Am I to blame?"
I don't think I can handle this.
I am really not that strong.
It seemed my heart was breaking.
I have loved him for so long.
I will not give up on this child.
I will listen to your advise.
I will give my son any chance
No matter what the price.
I will learn all I need
To help my baby thrive.
I'll even use that feeding tube,
My child must survive!
Will he need a lot of therapy?
Will he gain the needed weight?
Please God, help me do this.
As I accept our fate.
When the monitors beep at night,
it serves as my reminder.
How many parents would love that sound,
Tomorrow I will be kinder.
As another Angel earns his wings,
I run to my baby's bed.
I watch him sleep for quite a while,
I bend down and kiss his head.
I cry for the parents whose hearts have broken.
I look to You wondering why?
Oh Lord, I just can't know your ways...
no matter how I try.
And yet, I trust you hold his life,
and guide us through each day.
My mind says savor each moment he's here,
but my heart begs, "PLEASE let him stay!"
From pacing the surgical waiting room,
to sitting by his bed.
From wishing for a good nights sleep,
to learning every med.
From wondering, "Will he be alright?"
to watching him reach out his hands.
With every smile my heart just melts,
despite life's harsh demands.
For all who see that faded line.
I look to them and smile.
You see my child is loved so much,
I would face ANY trial.
That scar I trace with my finger
(It's the door to his beautiful heart).
God must have known how much I'd love him
(Just as He loved him from the start).
A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.
Every day I will try and remember,
I was chosen for him (and no other).
I will always embrace that beautiful day....
When I became a "Heart Mother."
- Stephanie Husted
Mommy to Braeden HLHS

Every Heart Has A Story... This is Severin's

March 4, 2010 19 week ultrasound. We were told something was not normal about our babys heart

April 12,2010 Perinatology confirmed Tricuspid Artesia, Hypoplastic Right Heart Syndrome, Transposition of The Great Arteries

April 20, 2010 Fetal echo confirmed everything that "could" have been wrong with Severins heart, was. We refer to this day as "the holy crap day" Diagnosis: Tricuspid Artresia, Hypoplastic Right Heart Syndrome, Transposition of Great Arteries, Coarctation of the Aorta, Ventrical Septal Defect, Double Inlet Left Ventrical, his Pulmonary Artery is too big and his Aorta is too small.

July 7, 2010 Birth of Severin!

July 13,2010 First Open Heart Surgery

Modified Norwood, Damas-Kaye Stansel, Coarch. repair,BT Shunt, ASD created

Nov. 22, 2010 Pre Glenn Heart Cath

Added to diagnosis: Pulmonary Stenosis, and Aorta has a "twist"

November 24. 2010 Second Open Heart Surgery

remove BT Shunt, Glenn Procedure, replaced 80% of his Pulmonary Artery

April 16, 2012 Heart Cath
Stent placed in Left Pulmonary Artery, due to narrowing. Increasing LPA diameter 3 times the size, and making it "normal" size

November 15, 2012 Fontan Day!

Sev ROCKED the Fontan! He was discharged 5 days post op. We have never looked back. He is healthy, growing, and so dang smart! He sees cardiology yearly. And the rest of the time he is a NORMAL little boy!