Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 So as of Wednesday, May 24, had his 10th ERCP (since October, 2005) to clean the crud out of his liver and replace the 3 stents that live there. His GI docs have finally come up with a plan, which is pretty exciting all on it's own. Pulmonary wants him to have 6 months in on his new lungs before we do anything else major. That gives us just under 3 months left (and approximately 4 more ERCP's), then we can do liver transplant. Also, I was told that they can find no reason why I can NOT be 's liver donor. We did a bone marrow biopsy on Friday, as the last remaining thing to check to see if has Langerhan's Cell Histiocytosis (a possible cause for all the major conditions he has) and he does not. Which is great, but frustrating at the same time. Because that leaves us with no answers. And that's about it for right now, as I'm VERY tired and need to check his blood sugar and correct him and go to bed so I can get up in 6 hours and check him again and give him meds (11 of them) and take him to the clinic for PFT's and visit w/ his pulmonologist and his tx coordinator (pulmonary) and then come back and visit G'ma Fox and have school and give a few more meds and then do whatever we're doing and then have dinner and then do more meds and go to bed (hopefully earlier tomorrow night than I am tonight). Night, all!! Hugs! Ami http://www.caringbridge.com/visit/seanfox (p/s: no update in a week or so. will try to do so tomorrow) __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Ami (((HUGS)))))) and uninterupted sleep wishes for you. Braden had 14 ERCPs also in a short period of time for sludge/stone formation, with only balloon dilations the first few times and then a series of stents- he only had two put in at a time though, never 3. The last time they removed stents his GI did a HUGE sphincterotomy cut- quote from GI- he 'cut the hell out it'- in hopes of creating a big enough opening where there wasn't such an opportunity for statsis of the bile. Thankfully there haven't been any more stones form since then. He is also on major antibiotics continually and high doses of urso, plus some other meds for his short gut. Although I don't know how much work and stress it is to have a child who has had a lung transplant, Braden does have major medical issues besides his liver. He has severe short bowel syndrome and has miraculously (so far and maybe for not much longer) avoided a small bowel/liver transplant. Have the drs done a sphincterotomy in hopes of better drainage ? I really wish I could give you some much needed uninterupted sleep time !!!!!!! Lori lucky mom blessed with wonderfully wild triplets www.caringbridge.org/visit/braden - In , Ami Fox wrote: > > So as of Wednesday, May 24, had his 10th ERCP (since October, 2005) to clean the crud out of his liver and replace the 3 stents that live there. > > His GI docs have finally come up with a plan, which is pretty exciting all on it's own. Pulmonary wants him to have 6 months in on his new lungs before we do anything else major. That gives us just under 3 months left (and approximately 4 more ERCP's), then we can do liver transplant. Also, I was told that they can find no reason why I can NOT be 's liver donor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2006 Report Share Posted June 7, 2006 Ami (((HUGS)))))) and uninterupted sleep wishes for you. Braden had 14 ERCPs also in a short period of time for sludge/stone formation, with only balloon dilations the first few times and then a series of stents- he only had two put in at a time though, never 3. The last time they removed stents his GI did a HUGE sphincterotomy cut- quote from GI- he 'cut the hell out it'- in hopes of creating a big enough opening where there wasn't such an opportunity for statsis of the bile. Thankfully there haven't been any more stones form since then. He is also on major antibiotics continually and high doses of urso, plus some other meds for his short gut. Although I don't know how much work and stress it is to have a child who has had a lung transplant, Braden does have major medical issues besides his liver. He has severe short bowel syndrome and has miraculously (so far and maybe for not much longer) avoided a small bowel/liver transplant. Have the drs done a sphincterotomy in hopes of better drainage ? I really wish I could give you some much needed uninterupted sleep time !!!!!!! Lori lucky mom blessed with wonderfully wild triplets www.caringbridge.org/visit/braden - In , Ami Fox wrote: > > So as of Wednesday, May 24, had his 10th ERCP (since October, 2005) to clean the crud out of his liver and replace the 3 stents that live there. > > His GI docs have finally come up with a plan, which is pretty exciting all on it's own. Pulmonary wants him to have 6 months in on his new lungs before we do anything else major. That gives us just under 3 months left (and approximately 4 more ERCP's), then we can do liver transplant. Also, I was told that they can find no reason why I can NOT be 's liver donor. > Quote Link to comment Share on other sites More sharing options...
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