Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Glad to hear is doing well, and that you got good news. She is such a sweet little girl, I think of her often. I hope she is keeping her glasses on a little better for you. Now with all her energy, watch out. Around here it seems like we are always getting them fixed (Gracie is always breaking her sisters glasses.) I don't know how you can keep a two year old off of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2004 Report Share Posted August 14, 2004 Hi All, We're back from our appointments at NEMC and although we didn't get any new answers the trip helped to confirm what we already know. is doing the best that she ever has in her life! Her energy is highest it has ever been, she's crawling and walking with her walker, she's signing like crazy and vocalizing a lot, her labs look awesome, and she's tolerating some feeds. We've finally figured out what works (right now)- Half calories from TPN with full maintenance fluids, 12 cc an hour of neocate through the J tube, daily slaine boluses, G tube to continuous gravity drainage, O2 at night, all meds IV if possible and stagger the Jtube meds so she doesn't get too much volume at once. WOOHOO! She's a happy camper! Nothing new from neuro or metabolics, except we did meet Dr. Korson and will see him again in a few months. We saw GI for a consult and he felt that has pseudo obstruction (must be the big city word for dysmotility) and mentioned doing manometry testing to find out what kind it is (?). He did say that TPN would probably always be part of 's life and that the goal is minimizing its use when she is well, not eliminating it. Also her hiatal hernia needs to be fixed to prevent further lung damage, her infections are most likely due to gut bugs leaking out and infecting other organs/blood, and that oral eating is not an option and won't look like one until she is at least 4 or 5. So, we're planning a care conference for 's docs back home to figure out how to keep her healthy, what to do about the hernia, how much further testing to pursue, and how to keep her home as much as possible. Oh, and har VCUG came back normal! No kidney damage from infections. YAY! I'm just giddy with the idea of having a kid who plays all day, gets tired from doing normal kid things, and stays out of the hospital. Things are lookin' up! Heidi, 's Mom www.caringbridge.org/ma/heather Quote Link to comment Share on other sites More sharing options...
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