Isaac's Blog
The Rollers found out tonight that Isaac will need a third heart surgery, scheduled this coming Friday at Stanford. Poor little guy, he just had a 13 hour surgery in November ~ they've only been home for one month. This was very unexpected, please keep the Rollers in your prayers.
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2 weeks before he was born ~ we did not know of his defect until he was 4 days old
4lbs 1oz ~ born at 32 weeks
"Unifocalization" ~ 9 hours by Dr. Frank Hanley
Chest was open for 4 days ~ hence the gauze on top
Still on a ventilator (remained on vent for another few weeks)
Mask would assist him to breathe in and out
Waiting for the surgery team to take him off
And still he smiles...
Happy day ~ Look no oxygen!
So much to be thankful for!
One boy's long road to recovery. Matthew was born two months premature with a rare fourfold heart defect known as Tetralogy of Fallot with Pulmonary Atresia and MAPCA's, and Ventricular Septal Defect. He's had two open heart surgeries and will need additional heart surgeries in the future. To appreciate the absolute miracle of this "3 plus million dollar boy", you'd need to look into the "Archives" beginning after his first 9 hr open heart surgery at Stanford, August 2005.
First picture
2 weeks before he was born ~ we did not know of his defect until he was 4 days old
Day of birth ~ May 10th, 2005
4lbs 1oz ~ born at 32 weeks
Day of first surgery ~ July "05
"Unifocalization" ~ 9 hours by Dr. Frank Hanley
After first surgery
Chest was open for 4 days ~ hence the gauze on top
Chest was just closed
Still on a ventilator (remained on vent for another few weeks)
BiPap mask
Mask would assist him to breathe in and out
Getting ready for second surgery
Waiting for the surgery team to take him off
After second surgery
And still he smiles...
Leaving Stanford after second surgery
Happy day ~ Look no oxygen!
Happy Days
So much to be thankful for!
To view more pictures of Matthew while at Stanford, you can expand the year of 2005 by first clicking on the arrow, then the month. He was at Stanford from July thru September of 2005. Matthew was transferred back to Sunrise hospital where he stayed until the end of October 2005.
His second open heart surgery at Stanford was March 16th of 2006.
We've been told he'll need a conduit change, on average, every three years. We are hoping technology will be on our side.
He's our amazing little soldier boy. Our miracle.
His second open heart surgery at Stanford was March 16th of 2006.
We've been told he'll need a conduit change, on average, every three years. We are hoping technology will be on our side.
He's our amazing little soldier boy. Our miracle.
2 comments:
Hi
I stumbled upon your site whilst searching for new research on PA with associated VSD and mapcas. My son, now 4 years old was born with this condition. He has been a miracle. He had his full correction at just 4 months old. It was a desperate decision for us and the cardiologists to go ahead and have this operation as he was failing to thrive, contracted RSV and was on a ventilator for nearly a month before the surgery. He also suffered 4 cardiac arrests so the surgery was a last attempt to save him. I am delighted to say he has done more than survive, he is living life up and will start school in the fall. I don't know how you feel but we feel so isolated here in the UK as this condition is so rare. We have not met any other families with anything even remotely similar.
Am going to take some time to read through your little boy's story and will be following his progress with prayers and thoughts for him in our minds.
with lots of love and sympathy
sonya x
Indeed Matthew is SO CUTE! I also wanted to share that I too found your blog while looking for research and updates on MAPCAs and VSD- our son who just turned 3 also has the same diagnosis and as Sonya posted in her comment- it is so hard to find good information or other families with the same condition- so many have TOF/PA with atleast some small true PAs- I'd love to chat more- my email is: buffystorm@hotmail.com and our webpage is: www.babyhomepages.net/storm
So good to see that Matthew is doing so well- our son is as well,
Buffy Storm, Columbus OH
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