Guest guest Posted January 10, 1999 Report Share Posted January 10, 1999 Hi , Sorry it has taken me so long to respond to your response... Kody has been back in the hospital (two admissions in the past 6 days). His veins are shot, and basically he is starving to death, cannot stay hydrated. SO...Thursday the plan is to place a central line. I have had two lines before, but only for a few weeks. The long term complications of TPN are liver and pancreas damage (eventual destruction). Our doc told us today about a kid who successfully was transplanted a liver, pancreas and bowel. He is hoping this procedure will hold promise in the future for Kody?1@#4*@#$(*@#$. THe tentative diagnosis besides EE is chronic intestinal psuedo-obstruction. Just curious how you came to the decision and how you dealt with the fact that the treatment will help short term but will eventually kill them? SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 1999 Report Share Posted January 10, 1999 Hi there; Well I don't know about you, but you might look at it this way. If your child doesn't get TPN he is dead too. So what your buying is time. has been on TPN for six years and his liver is great. I think the trick is to make sure they eat even a little. I know thats hard sometimes when the kids are Pseudo but I do know of alot of parents that do. Its more dangerous with central line infections and such and yet I find TPN easy enough. I think you might want to join the onelist for TPNsupport and get some insight what its like. Just because a child is on TPn doesn't necessarily mean transplant. Transplant is almost always a last resort when you fail with your access and liver. As for how to cope knowing your child is that severly ill. I think we all deal with it in our own way. I get periodically depressed and then things get better. I am glad for all the time and moments I have with . He is a great kid and I think I appreciate life and living much more then other parents. But there is live with TPN and has been thriving. yes its got its drawbacks but just look how far we have come. Only one piece of advise. Learn a good sterile technique and make sure you do most of the care. The hospitals and nurses out there majority wise have lousy techniques. just had a massive line infection last week. Its his second in his life and very frightening. I still blame myself and hate when he gets that sick. But thats why its so important to be in control. I hope I helped a little and there are amny TPN parents out there. You find we are very optemistic for our children Beatrix Mom to Total HD, short gut, TPN,g tube hydration, esiophilic gastro 6 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 1999 Report Share Posted January 12, 1999 In a message dated 1/10/99 7:53:39 PM Eastern Standard Time, SJHarlow@... writes: << Kody has been back in the hospital (two admissions in the past 6 days). His veins are shot, and basically he is starving to death, cannot stay hydrated. SO...Thursday the plan is to place a central line. >> Steph: We will continue to keep Kody in our prayers. Please keep us posed. The G- tube was not keeping him hydrated? How long due they think he will be on TPN. Thinking of you. Love, Sharon mommy to Jake (5) and fraternal twins (34.5 weeks) (3/30/97) - Cole -(nda) and Clayton (eosinophilic gastroenteritis, food allergies (milk, soy, eggs, wheat), g-tube, Nissen, latex allergy, mild DD, undiagnosed neuro issues, sensory integration disorder and now tremors and suspected metabolic disorder, WHEN WILL THIS END) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 1999 Report Share Posted March 18, 1999 We were up, up up and now we are down down down. After several successful days of small GT feeds with Kody, he had a really rotten night, retching, more GT output than in throughout the entire day. I stupidly had let myself get hopeful that maybe his problem was from the tube and not CIP. And our 2/yo is having a really rough time. BLood stools are back (other than a few eos in his colon his last colonoscopy was normal) and he is WAAAYYYY off his game. His GI wanted me to get a stat CBC this afternoon but by the time I got to our peds, he was gone for the day. He is such a mess (I've actually never seen him like this) I am taking him to the after hours clinic (that will be a hoot -- you all know what happens when you take OUR kids to see someone who knows nothing about EE). AT least we are getting our first night of nusring care tonight. I had visions of getting sleep -- what's that --- but instead will be dealing with a very sick 2/yo and Kody at least will get his TPN. It really never does end, does it. I just want to know when we (meaning us on these lists) get a BREAK????? -- Idiopathic Eosinophilic esophagitis; Mom to 15, IEE, NIssen/GT; Ken,11, IEE; Korey,7, IEE (NG); Kody, 4, IEE/CIPO. G/JTs;TPN; Killian,2, IEE (NG); SJHarlow@... http://www.c4isr.com/harlow Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Bad Roller Coaster!!! Note: forwarded message attached. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Bad Roller Coaster!!! Note: forwarded message attached. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2006 Report Share Posted July 18, 2006 Bad Roller Coaster!!! Note: forwarded message attached. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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