Wednesday, October 15, 2008

THE Amazing Sully

Sully had surgery yesterday. You remember Sully, I told you about him last month. The surgery was over ten hours in duration and was performed by the renowned neurosurgeon Dr. Ben Carson at John Hopkins in Baltimore. Sully was born with hemimegalencephaly, a rare brain disorder which causes severe developmental delays and progressive seizure activity. It was determined that Sully's seizure activity has become so severe that his quality of life was greatly diminished when they reached 25 to 30 seizures per day. Sully's parents had been medically advised all along that this was his prognosis and without this surgery, Sully would have a minimal quality of life and would live it in severe discomfort and pain.

The tremendously remarkable thing is that these loving parents made the gut wrenching choice, a giant leap of faith to go ahead and do what many of us as parents simply could not do, and give the go ahead to the surgery.

Sully has had part of each of the four quadrants of his brain removed. He will need to be still, with his head turned right for at least 48 hours so that his skull cavity can refill with cerebral fluid. He is partially paralyzed on the right side, which is a normal side effect of this surgery and will diminish over time. In fact, his parents saw his right leg move slightly today. Sully is heavily sedated and recovering in the Pediatric Intensive Care Unit (PICU) with a full time RN assigned to him 24/7. His parents report that he is receiving unbelievable care. I have posted a pic below that was taken this morning in PICU by Sully's dad. Put your hands together and give thanks for this successful surgery & send along good thoughts wishing Sully a speedy recovery.


God is good and Sully is beautiful!

8 comments:

Girl Rants said...

oh YAYAY!!! im so glad. here's to a speedy recovery. prayers from NY!!

Seraphine said...

i'm in awe of the extraordinary courage of sully's parents, not only for enduring the surgery, but for their strength in everything that preceded it. i cannot imagine the helplessness and emotion of watching a baby struggling with such a severe illness.
best wishes for sully's recovery and the chance at a happy, normal life.

3 Magpies said...

Girl: Thanks for the prayers from NY. Keep'em coming! Sully is progressing as his dr.s expected. His very loving parents got to spend a great deal of time with him today!

Sera: His family is ROCK SOLID and right on track. He brings joy into so many lives by being, well just being happy little Sully. Thanks for the best wishes. Keep'em coming!

Just telling it like it is said...

Sully my prayer are with you..for I have seeing mirical in the
ER and I have seen when God has said it is time to go...but being a Nurse..I knew that I could only do my best and leave the rest...Sleep Well sully and may you have no pain...My prayers are with the family too...

Just telling it like it is said...

and I ment that he pull though this with no pain and some kind of wonderful like what ever that might be..touched me and reminded me about my faith

3 Magpies said...

jtilii: His breathing tube was removed tonight and the swelling has gone down so that he is a bit more recognizable. His CT scan was normal for this situation and his cranium is continuing to fill with fluid. He will remain in PICU through the weekend.

His parents are hanging in there.

Thanks for the kind words and continue to recall and call upon your faith. Kids have a way of doing that to us, don't they?

Walker said...

I hope he gets well soon.
Its a leap of love and faith that makes parents make those hard choices.

Jamie Dawn said...

God be with this precious child and his family.
I pray he recovers fully.