4-everQuist: MRI = Ventilator bummer

Friday, July 9, 2010

MRI = Ventilator bummer

Severin is a far from boring kid, same as his heart. The Surgeon wanted an MRI to get a better look at his crazy pulmonary veins, to decide what is the best proceedures. They have to be intubated for a MRI, the hope is it is only for the MRI and then removed. Severin has been having some apnea. Which is a side effect of his medication-we knew this. But because of this he will stay on a ventilator from now until after surgery. We were able to give lots of kisses, and now we wait. What a gift the past two days have been! I will be discharged soon from the U. It will be great to be with my kids for bed time. I'll update on the MRI as soon as we know anything.

3 comments:

The Richards FamilyJuly 9, 2010 at 5:00 PM
Angee, Congratulations!! We have been on vacation the past few days and I couldn't wait to get home to see how things were going. I am so glad that things are going well! What a beautiful boy! I can't believe all of his hair. I am so glad that you were able to hold him...what a blessing! We are praying that all continues to go well!! Hugs, Jamie Richards
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AllisonJuly 9, 2010 at 8:29 PM
Just wanted you to know that we were checking in!! Sounds like so far things are progressing great!! You are SUPER lucky to have snuck in that hour to hold him...and so nice that he didn't have any respiratory issues that would complicate things. We will be watching with you in the next few days and sending all of our positive thoughts and prayers your direction for surgery on Monday!

Alli (IHH)
mom to Grant
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LeslieJuly 9, 2010 at 10:02 PM
I am so happy you have been able to cuddle that cutie! He is precious! Take care of you too! I hope to come see you all next week. I had knee surgery today and should be hobbling around by then. My prayers are with you!
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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!