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Update on Natalie - Posted by: Marlene, Aug 22,1999 Thanks all for your prayers. Keep 'em coming. I admitted her Tuesday and she was tired, but still okay. Wednesday around 7 am she went into respiratory distress. Within 1 hour she was on the vent and in peds ICU, where she remains today. What happened? Viral pneumonia and the organism is yet to be determined, since the cultures haven't grown anything. (We had her Bronc'd, to get good clean samples from her lungs.) They are fairly sure it's fungal, yes folks, yeast in her lungs. If there is an overgrowth of yeast it can spread everywhere, including your bloodstream. (Which can create blood clots, causing major problems, including death.) I have to go soon, so I can't give a lot of details. Why did this happen? Well, EVERY doc has told me it's because she is immunosuppressed, and peds. are especially vulnerable.(At one point I wanted to where a button that says "I know by daughter immunosuppressed", because I was so sick of hearing this.) Yes, my daughter has been on a tiny dose of cyclosporine for her heart, but she didn't start having all these colds, flus, ear infections, (first ear infection last May), ect... until we started her on the steroids and 6-mp in Feb. Before that, she was having GI problems, but no illness. One doc told me steroids is probably what caused this opportunistic bug to take over her sweet little body, but I'm sure 6-mp didn't help either. She is on the vent and her kidneys shut down yesterday, so she is on dyalsis (sp?) starting today. Her liver is enlarged, possibly because of the 6 mp, but no one is going to say at this point, becuase it's on the bottom priority of problems. (It also could be enlarged for other reasons, but her GI doc did tell me this could be a potential side effect of the 6 mp). What's next? It's an hour by hour wait and see. The care she has been receiving at the hospital has been wonderful, which is a relief. We went and saw the homopathic MD last Monday and I was so excited to share the info. I still hope to when I have the time. I am now one DETERMINED mother to give homopathic a try when she is well, because I can't heal her Crohn's--- and then later try to save her life because of the side effects. It can be an ugly vicious cycle. Natalie is in the middle of that cycle right now, fighting with everything she's got. What are my choices? Side effects that can cause death, alternatives or living in a bubble. Every child is different, but Natalie is showing me in her case we have to try alternatives. Marlene |
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