So, over the last couple of days, I've been working on getting myself more into a new mindset-- the "transplant mindset." The wonderful support from my "liver family," my real family, friends, and coworkers has really helped me along with accepting the whole idea. I mean, of course I want Elise listed if she needs to be listed....but I think it's the "needing to be listed" part that was giving me a problem.
Anyway, we are now awaiting Elise's transplant evaluation at Texas Children's Hospital. I spoke with the care advocate on her case with the insurance company on Friday, and everything is approved, so now we're just waiting on the dates/times of all of her eval appts to be scheduled. It will all probably be taking place the week of May 14th. This "transplant evaluation" consists of assessments by the pediatric hepatologist (liver doctor)- Dr. Fishman, the transplant surgeon- Dr. Goss, the dietician- Stacey, the transplant coordinator- Julie, the social worker- Barbara, the Child Life Specialist- Mary, and a psychiatrist. She also needs lots of blood work done, a chest x-ray, EKG, echocardiogram, and an abdominal ultrasound.
Needless to say, Elise's NG tube is not getting pulled any time soon. Well at least not "officially" by the doctor. That's not to say that Elise doesn't pull it out herself every day....because she does. But back in it goes every time she pulls it! So if she has to have this undesirable accessory, you can count on me to do my very best to make it a little more tolerable. That's where these amazing "feeding friends" comes in. One of my fellow "liver moms" introduced me to these little sticker creatures which do wonders for holding onto the tube, keeping it in place, and at the same time making it a little more child-friendly.
Anyway, we are now awaiting Elise's transplant evaluation at Texas Children's Hospital. I spoke with the care advocate on her case with the insurance company on Friday, and everything is approved, so now we're just waiting on the dates/times of all of her eval appts to be scheduled. It will all probably be taking place the week of May 14th. This "transplant evaluation" consists of assessments by the pediatric hepatologist (liver doctor)- Dr. Fishman, the transplant surgeon- Dr. Goss, the dietician- Stacey, the transplant coordinator- Julie, the social worker- Barbara, the Child Life Specialist- Mary, and a psychiatrist. She also needs lots of blood work done, a chest x-ray, EKG, echocardiogram, and an abdominal ultrasound.
Needless to say, Elise's NG tube is not getting pulled any time soon. Well at least not "officially" by the doctor. That's not to say that Elise doesn't pull it out herself every day....because she does. But back in it goes every time she pulls it! So if she has to have this undesirable accessory, you can count on me to do my very best to make it a little more tolerable. That's where these amazing "feeding friends" comes in. One of my fellow "liver moms" introduced me to these little sticker creatures which do wonders for holding onto the tube, keeping it in place, and at the same time making it a little more child-friendly.
Elise taking a nap with her feeding friend, Mr Fishy--not to be confused with her liver doctor, "the Fish" Dr. Fishman...LOL!!
Elise showing off her little party dress, BA/transplant awareness bow (made for her by our "liver friend" Denielle), and her new feeding friend, "T-Turtle."
And for any fellow liver moms who are interested in these little "feeding friends," here's the link to the website where they can be purchased:
Those feeding friends are so cute! I wish I would have known about them when my daughter had an NG tube. Best of luck on your evals! -Cassie
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