Sorry I haven't updated since that last post when Anna had her biopsy. I know I said I would let you know the results, and I'm sure most of you do anyway, but for those of you who only know of us from this blog I'm sorry I left you hanging. I actually just found of a couple people who read this blog that I didn't know even knew about it. For those of you, sorry. I really didn't think many people looked here. Also I have been working a lot, have been really tired, and we just found out last week that we are moving at the end of this month so I just haven't had the time.
We didn't get the results we wanted to get. Anna is still having mild rejection. It was another shocker that no one expected. Her doctors said the expected to see resalution. Let me tell you, even though we knew that she had rejection in January, it was unexpected that it would still be going on 4 months later, especially with Anna being put back on her meds. The good news is that it still looked better than her last episode (which they said was mild) so this is even more mild. They did not have to put Anna back on steroids, they just put her on a twice a day dose (up from a once a day dose) of her immune suppressant medication. This stinks because it's twice the amount of immune suppressants. A week later they turned up her dose a even little more than that. I just figured out the other day that she has not been on this high of a dose since she first started taking this med when she was 2 (a different immune suppressant was used before that). We once again have to worry about her picking up every little virus floating around. Since then she picked up a strep skin infection, a summer cold, her eczema is back full force, and she seems to have an ear infection now that I'm taking her to the pediatrician tomorow.
Once again, all of her blood work looks perfect! Nobody understands why nothing shows up in her labs and only in her biopsy's. We talked to the doctor and expressed our concerns that this might be something else but she assured us that it was rejection, the biopsy did not show any liver damage, and we'll just continue to monitor. Another biopsy will be repeated in 6 months and labs still every 2 weeks until her medication level stays where they need it to be to control this rejection and to keep an eye on her liver numbers. I feel like we are where we were a year out of her transplant and that is a hard place to be right now.