Guest guest Posted February 7, 1999 Report Share Posted February 7, 1999 I feel so bad for Kody and all of you. I hope he is back to smiling and being happy again soon. I will keep you guys in my thoughts and prayers. Lynda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 I hope Kody is having a better day and improving by the minute!! Phyllis Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 How is Kody today? My prayer groups are working double time for him!!! Hugs to you too!!! Kelsey ____ " Waiting is worse than knowing. Grief rends the heart cleanly, that it may begin to heal; waiting shreds the spirit. " Llywelyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 1999 Report Share Posted February 8, 1999 How is AJ and Remi? I have been thinking of you guys. I haven't had a lot of time online since I started working in December. Dawn, mommy to Dakota, 6 and , 3(eosinophil gastroenteritis, reflux, asthma, Nissen 10/96) phyllis m. zuckerman-frieze wrote: > > > I hope Kody is having a better day and improving by the minute!! > > Phyllis > > ------------------------------------------------------------------------ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 1999 Report Share Posted May 28, 1999 We just got back from children's at Pittsburgh. It was pretty much the trip from @#$()*#$. The airline canceled our flight out, he retched and gagged almost the whole way, we got there 4-5 hours late, they were unable to get his TPN (I fax'd the orders a week prior) together, they didnt give him enough fluid, he had another bleed that night, etc, etc. The 2nd day was better, He felt fine after enough hydration (he didnt pee for over 15 hours) that day, the catheter placement was easy. He had no motility the first two hours of testing (--this on a " good day " ) but did have some contractions after Erythromycin. They did a gastric emptying scan the next day (another " good day " ) -he tolerated a 60cc bolus of Neocate for the study. THere was some delayed emptying, but it was not severe. So where are we now? No where. On a good day when he seems fine, he still doesn't have " normal motility " . We will try the Erythro and see what it does on the 'bad days'. He also wants us to try the treatment for cyclic vomiting. we have nothing to lose. He did mention if those don't work to bring him back for a study on a " bad day " but I cant see doing that. If neither of these treatments work (and I and his peds GI are not optimistic), another study would not alter the treatment at all. I dont see any reason to put him through it again. The genetics people there were ecstatic to get a hold of us. I hope they come up with something . They are doing a genetics study on mitochondrial etiologies for CIP. Thats about it. WIsh I could get a good stiff drink. GUess I could just pour some bourbon through my GT. *sigh*, My little denial bubble was busted by the good doctor DiLorenzo when he said kody would never have normal enteral feeds, the best we can hope for is a partial enteral/partial TPN situation. Oh well, there was only a little hope left there to bust anyway. Is it just me, or ooes that man have a beautful voice (has anyone ever heard him sing???) emotional exhausted, steph Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 1999 Report Share Posted May 28, 1999 In a message dated 5/28/99 2:33:16 PM Eastern Daylight Time, SJHarlow@... writes: << The genetics people there were ecstatic to get a hold of us. I hope they come up with something . They are doing a genetics study on mitochondrial etiologies for CIP. >> Steph: Sorry that your trip did not go well - but hopefully you may be able to get some answers. As youy may be aware Clayton was just diagnosed with a mitochondrial disorder and in his case it is mainly affecting his stomach and he also sees some kids like LCayton with the severe food allergies that effect only the stomach and do not show up in standard testing. Also we know his motility SUCKS - but the carnitor is the first medication that it actually helping. Also he is on the elecare formula - both by mouth and g-tube and is tolerating it well. Love, Sharon (who is still at KKI with Clayton after almost 5 weeks and we wilkl be here to at least June 21st) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 1999 Report Share Posted May 29, 1999 Stef, I wish things had gone better. I will pray that the erithromycin works. Cathy Quote Link to comment Share on other sites More sharing options...
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