One Week Later...
Posted Aug 10, 2010 4:19pm
Can't believe it's been a week already, but Phil is doing very well with his new addition. Right now, we let him eat "normally" during the day, and feed him two cans of ensure through the tube overnight. However, if his "real" food consumption doesn't go up soon, we might have to use food as the added calories. I was thinking that perhaps I should eat only what Philip eats, and we can call it "Uncle Phil's Diet Plan", as I should be as thin as I was in high school in no time at all!!
We went the Children's again on Monday to check in with his cardiologist, who gave us two thumbs up on his echocardiogram. His funciton is low/normal, but for a Duchenne's kid, that's good. I also like his approach of no heart meds yet - if it ain't broke...
The VNA has been better than great so far, sending out a physical therapist who assessed our living situation...and I was rather amused to find that all of our "winging it" was impressive to her. So, we now have a (decent) hospital bed coming, along with a Hoyer lift and a bath chair! (No more baths in the beach chair, pal!) The RNs will be coming in a few times a week to check up on things - but primarily it's to establish a kind of baseline for Phil, as he's going to need lots of nursing care after his surgery. Tomorrow we meet with the Occupational therapist to try and help Phil learn how to function with his back all straightened up - eating, playing his games, legos, etc. Again - a jillion variables could change everything, but we have to start somewhere.
He's still pretty skittish about handling the g-tube, but getting used to it, and finding out it doesn't hurt. It's also become the butt of family humor, and Travis has already threatened to put hot sauce in it if he mouths off to him, and his other brother wondered if we could put shots in it. Oh...a great deal more humorous conversations, but I think you'd have to live with this to totally appreciate it...lol.
Thanks again for all your support - it helps more than you may realize. Getting ready for this is like getting ready to go on a major trip or something - it just seems to affect every aspect of our lives here; and no one has sugar coated how brutal this surgery and it's recovery is. So, we are kind of approaching DEFCON 3, here, trying to cram in a years worth of activity into less than a month. Wish us luck!! We'll post updates as we go!
We went the Children's again on Monday to check in with his cardiologist, who gave us two thumbs up on his echocardiogram. His funciton is low/normal, but for a Duchenne's kid, that's good. I also like his approach of no heart meds yet - if it ain't broke...
The VNA has been better than great so far, sending out a physical therapist who assessed our living situation...and I was rather amused to find that all of our "winging it" was impressive to her. So, we now have a (decent) hospital bed coming, along with a Hoyer lift and a bath chair! (No more baths in the beach chair, pal!) The RNs will be coming in a few times a week to check up on things - but primarily it's to establish a kind of baseline for Phil, as he's going to need lots of nursing care after his surgery. Tomorrow we meet with the Occupational therapist to try and help Phil learn how to function with his back all straightened up - eating, playing his games, legos, etc. Again - a jillion variables could change everything, but we have to start somewhere.
He's still pretty skittish about handling the g-tube, but getting used to it, and finding out it doesn't hurt. It's also become the butt of family humor, and Travis has already threatened to put hot sauce in it if he mouths off to him, and his other brother wondered if we could put shots in it. Oh...a great deal more humorous conversations, but I think you'd have to live with this to totally appreciate it...lol.
Thanks again for all your support - it helps more than you may realize. Getting ready for this is like getting ready to go on a major trip or something - it just seems to affect every aspect of our lives here; and no one has sugar coated how brutal this surgery and it's recovery is. So, we are kind of approaching DEFCON 3, here, trying to cram in a years worth of activity into less than a month. Wish us luck!! We'll post updates as we go!
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