Edward Hunter Shaw
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Eddie was born Nov 13, 2000 here in Ohio at only 24 weeks of pregnancy, Eddie was 1 lb 11 1/2 oz, 13 inches long. He fought for 4 months in the NICU and came home with a trach because of a paralyzed vocal cord. He also has acid reflex and BPD (a lung disease). There have been some hard times, but Eddie is a real fighter. He now drinks from a bottle but while he was hospitalized he was on a NG tube with continuous feeds.
Right now he started a medically fragile day care, staffed with nurses, he goes two days every week, and he loves playing with the other kids. Being with other kids really helps him even though he cries when I drop him off, but I guess every kid does that. I thought it would be better for him now because it's been hard at home getting nurses that want to show up for a shift. He has one regular nurse that comes Monday and Friday and she helps out.
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Edward (Eddie) age 2 1/2
Update, May 2003 to July 2003: Eddie went to go see a new doctor,
Dr. Robin Cotton of Children's hospital in Cincinnati Ohio. She is so pleased with
Dr. Cotton work so far. June 2003 Lots of doctors visit this months but every thing looks really good. Airway is improving day by day. July 2003 Eddie is a big boy now. He is 32 inches tall almost three in November. He loves tucks and box cars. He is getting a little adventures and playing with his trach. So mom has to keep a very close on Eddie now. He is off oxygen now and breathing very well. He a little boy on the go. Loves the zoo.
Update, August 2003: Eddie had reconstructive airway surgery on Monday, August 11, 2003. It went well. It lasted 6.5 hours. Dr. Cotton repaired his narrowing of the airway and put anterior and posterior rib grafts on both sides to open his vocal cords. Right now he'll still have his trach, but he is making some vocalization
(crying) that can be heard. He has a tube in the side of his neck to drain excess fluid and he had one below his rib cage where they took the skin for the reconstruction. He is a real brave little guy and came through this with good spirits. They also want to make sure with his new airway that he swallows
OK and so far he's doing great.
Update, September 29, 2003: Eddie was capped and so far he's been doing great. I heard his voice for the first time in 3 years and it's pretty amazing. Eddie will go back to Children's on the 27th of October for a full 48 hour capping. If all goes well Eddie will go back in few months for the decannulation.
Update, November 2003: Eddie went to Children hospital in Cincinnati
Ohio On Monday Oct 27 2003. He did his capping trial on Wednesday Oct 29, for 48 hours. He was
decannulated on Friday, October 31, 2003.
He is doing well with his airway. Mommy is so proud of Eddie. Wishes do come true. Thanks to
Dr. Robin Cotton of Cincinnati Ohio Children's Hospital. Eddie will be coming home without a trach on Sunday, November 2, 2003.
Karen from Ohio
Email is Lasvegas_girl25@yahoo.com
