Our Family....
Our Family...
Tuesday, May 3, 2011
G-tube
Hailey's gtube site WILL NOT HEAL!!! It is making me crazy. I can't even turn the button because of the constant granulomas. It is so frustrating! Not to mention the fact, that she went through the pain of surgery, g-tube and nissen, and she has not gained any weight at all! So tired of constantly being stressed out. I know she has to be, too. She had the surgery on Feb. 28th, then lost weight after. As of last week, she is finally back up to her pre-surgery weight. I can't stand what CF is doing to her! I wish there was something I could do to take this away from her.
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A little more about Hailey...
Hailey was born on August 9, 2007 by scheduled c-section. She was 8 pounds 4 ounces and 20.5 inches long.
She was transferred to Children's Hospital at around 12 hours old, because her stomach was distended and she had not yet had her first bowel movement. They thought she may have had something called Hirschsprungs Disease.
We spent 8 full days in the NICU. Every test they ran came back negative. Finally she began to have bowel movements. We were told she was a perfectly healthy baby and were sent home on the 9th day. A week and a half later, her newborn screens came back positive for CF. A week later, at 3 weeks old, she had a positive sodium chloride test (sweat test)
Her Meds and High Calorie Drinks
Pancreatic Enzymes- about 9 a day. Which she swallows like a big girl :) And also 9 at night, crushed into her feed bag
Nasonex- once a day
Singulair- once a day
ADEKS- once a day
Albuterol- nebulized 3 to 4 times a day
Hypertonic Saline- nebulized once a day
Pulmozyme- nebulized once a day
Prevacid - 2 times a day
Boost Kids Essential 1.5 through her gtube.
Carnation Instant Breakfast Plus
Boost Resource
Vest Treatmenst- 3 to 4 times a day (24 minutes each time)
The vest vibrates and "pounds" against her back and chest to loosen mucas inside her lungs. This makes it easier to cough up the mucas. This is too help prevent lung infections.