Journal entry by Rachael Callaway —
On February 1 Victoria was weighed and slightly gained weight. We started having some conversations about removing her G tube, but all were still a little hesitant. Then on March 1 Victoria was weighed again and gained 12 oz! That increase put her half way back to her pre-wean weight. Victoria’s pediatrician gave the ok to remove the tube so we took it out that night.
Victoria is happy to not have the tube anymore, but she still finds her old unused feeding supplies sometimes and pretends to hook it up. This is the first time Victoria has been completely tube free.
We met with an orthopedic surgeon to discuss Victorias scoliosis on March 10. He found that her curvature hasn’t changed in the past year so he isn’t too concerned at this point and left the decision up to us. We decided to take a break from the medical life for a bit and wait to see what happens. Victoria will continue getting X-rays every 6 months and if her curve ever appears to be getting worse she will need a brace.
The kind of brace the orthopedic surgeon recommends is one that would only need to be worn at night. But it bends you into the spinal curve to correct it. He believes Victoria will see success with a brace but will need it for probably a few years. If the brace doesn’t work she may eventually need surgery to place rods.
Victoria’s G tube site wasn’t completely closing on its own. We discussed with the surgeon and she was able to get us in the next week for a full G tube closure. The procedure removes the scar tissue that was preventing the site from closing all the way and adds a stitch to help it heal nicely. Now instead of looking like a second belly button it will look like it is part of her existing scars.
Victoria did very well with this surgery. Soon after waking up she was moving around and happy as if nothing had happened. She continues to be a happy and energetic little girl.
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G tube out for good!
Just before G tube closure surgery
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