Our first few days out of the hospital are behind us and we are starting to feel rested and a bit more normal. Ellie is doing great, has started eating some small amounts of solid food and is starting to gain back the kilo (2.2 pounds) that she lost during her stay at the Inn.
We are back to 12 hours of PN 5 days a week with the other 2 nights of 12 hours of D10(hydration fluid that is 10% dextrose). Ellie is only getting 15 mls of Elecare an hour, which works out to 12 ounces a day. Our plan is to get her back up to the 24 or more ounces a day, but we have to increase her slowly so we don't over whelm her intestines that are still waking up after surgery. It weird to see her not be that excited about food, but we are hoping this will change and we will have our big eater back soon.
The biggest difference in Ellie post surgery is poop. Right now it seems the surgery worked, her ostomy output is much less and she is pooping in her diaper much more than she used to. We just have to hope that this trend continues after all the inflammation is gone. Also her new G-tube site is beautiful.
We have had g-tube envy any time we saw parents with kids that had little to no dressing on their kid's G-tubes. Ellie's old site required 4 different layers of dressing and a lot of tape and then even then we had to change the dressing 2-4 times a day. Her new site is doing great and the old one has healed up very well.
All the dressing are now off of her incision line, and it is impressive. I guess it was hard for us to comprehend how big it really was until we could actually see it. It is very long. It starts just below her old scar (about 1.5 inches above her belly button) to just above her pelvic bone. It runs right down the center and even does a little half moon cutout around her belly button. I don't know why but I am having a harder time being O.K. with this scar, it just seems so big. It is a hard thing to see on such a small body. But then I look at her old scar, and it has almost completely disappeared, so I know this one will to. I hope.
We are looking forward now to days filled with nothing big to do but play and be normal. Ellie has clinic next week so, until then we just hang out and watch our girl grow.
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Getting back to normal sounds pretty good. Andy, Tonya and Camden must be halfway home by now . My friend who is taking care of Madison today sent a pix of her giving "Baby Camden" some medicine into his G-tube. Can't wait to see pictures of Ellie with her special smile, acting cool as ever. Maybe you will meet up at Clinic, but not quite sure how that works. I am pretty sure his is on Thursdays. Love and continued good results. Nana B.
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