A Plan, But not Without Reservation
First thank you for the post on this page. They mean so much. Simon has not really improved and I have worked hard through phone and e mail to get doctors to coordinate and come up with a plan to help him and have talked to other NEMO moms and things their docs have tried. I'm in between a rock and a hard place b/c I now have a plan thanks to Dr. Orange but I'm not sure I like it. Starting tomorrow for 6 days Simon is to go on steroids. I hate them and he has not been on them since the first transplant. They cause alot of havoc. Then he is to start an oral form of pulmicort. Its an asthma medication. The thought is that it will relieve the inflammation and help calm the gi tract in the colon. This has been used twice before with NEMO patients with a 50% success rate. It does lower the immune system so that is where my hesitation comes in. None of this is easy and the sleepless nights are not helping me be clear minded. I will discuss it further when I go in tomorrow for pentamadine, labs and iv steroids. Please pray we are making the right decision and it changes things in such a positive drastic way it paves the way for others. I am going to hope and get some sleep and pray simon doesn't poop as much tonight. Still I'll probably get up 10 times to check his raw butt and make sure its not sitting there. He chowed at dinner saying "mmmmm this is good" he always says that now its funny, so I hope it doesn't hurt him through the night. We lengthened the TPN hours to 12 so I started him early so I can disconnet the IV and get the girls off to school because last night and early this morning he threw up. Too much dextrose, too fast. So pray for a sleepfull night. Thank you for the prayers. God Bless Tracy
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