poor Elyse... still senstive to that damn tape. Her stoma seems to be healing, but i'm supposed to keep it covered with gauze and tape. She's really breaking out.
VISITS
Friday, August 7, 2009
Tuesday, August 4, 2009
Tube Free!!!
i'm so excited. Elyse did us a huge favor. She managed to yank out her feeding button. Don't know how it really happen, but it's out. I called GI in Milwaukee and they said i didn't have to worry about forcing it in since it was the plan anyways... BUT only if I felt she no longer needed it.
well heck, I didn't even try. she's eating and drinking good. We have no problem getting her to drink the pediasure. She loves that nasty stuff. it's the first thing i have to give her when she wakes up. she even wants more after she's had her second bottle (we don't give her more though).
We are still taking her on the 18th since we still have the Pulmonary appointment scheduled.
Also, we have switched some of the other services to Milwaukee. I seriously can't remember if i have blogged this. We are now seeing Dermatology (will take over our Chicago hematologist) and Neurology in Milwaukee. We love our Chicago doctors (Hematology & Neurology) but Milwaukee has a Vascular clinic, they are doing research and seeing more kids with PHACE. I felt that was the best place for Elyse.
Dr. D (dermatology) and Dr. S (neurology) seem very nice and I've heard great things about them. We had our first appointment two month ago and now we are in the process of scheduling a new MRI of her brain in Milwaukee. Dr. D has a protocol setting for MRI's for the kids with PHACE. They did review all of Elyse past MRI's from Chicago, but felt that the images were clear enough to answer some of my questions. We are hoping to get the MRI schedule on the 18 but, we'll see. Elyse needs to be under general anesthesia because of her history with reflux and aspiration.
well heck, I didn't even try. she's eating and drinking good. We have no problem getting her to drink the pediasure. She loves that nasty stuff. it's the first thing i have to give her when she wakes up. she even wants more after she's had her second bottle (we don't give her more though).
We are still taking her on the 18th since we still have the Pulmonary appointment scheduled.
Also, we have switched some of the other services to Milwaukee. I seriously can't remember if i have blogged this. We are now seeing Dermatology (will take over our Chicago hematologist) and Neurology in Milwaukee. We love our Chicago doctors (Hematology & Neurology) but Milwaukee has a Vascular clinic, they are doing research and seeing more kids with PHACE. I felt that was the best place for Elyse.
Dr. D (dermatology) and Dr. S (neurology) seem very nice and I've heard great things about them. We had our first appointment two month ago and now we are in the process of scheduling a new MRI of her brain in Milwaukee. Dr. D has a protocol setting for MRI's for the kids with PHACE. They did review all of Elyse past MRI's from Chicago, but felt that the images were clear enough to answer some of my questions. We are hoping to get the MRI schedule on the 18 but, we'll see. Elyse needs to be under general anesthesia because of her history with reflux and aspiration.
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