Morning folks, ready to be frustrated along with me?

Well here’s the thing..now they aren’t sure that Lennon has PTLD at all and send off some labs to the Mayo clinic and some local tests they can do to check for autoimmune hepatitis issues.. So to recap first it was either rejection or failure.. biopsy indicated that Lennon’s liver has some dead cells in the center of his liver…why? Well because there is another clot in one of the vein/artery type plumbing…ok they ballooned that while Lennon was in biopsy..good..blood flow is going…there is hope that those dead cells regenerate ..the liver a marvelous and so important organ.
The two other sections show inflammation and/or infection, but Lennon has not or is not running a fever.. so there is lots of confusion going on there. Additional stains of the sections they took from his liver.. indicate that he may not have PTLD but some autoimmune issue…ok I am still confused on this and until results get back (sometime next week?) we don’t know a much of nothing.

His ammonia is still up so they are wondering if Lennon has some oozing in the stomach and that blood that may be present can raise the ammonia..but I didn’t notice anything so they are gonna add something to coat his stomach more ..in addition to the prevacid.

Overall, Lennon is good…just bored out of his mind I guess…stuck in this room (because we are still under isolation due to the VRE) …so video games can occupy him some of the time… the teacher comes he’s real happy and he doesn’t want her to leave. So we play toot and otto and we read “the very hungry caterpillar” and allow him to play video games. He’s feisty and he’s “done” with it all I think. He hates them messing with him and will fight them and that can make it tough.

Anyway, until they know anymore about what might be going on, we will live here at UVA for awhile and manage life as best as we can.

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4 thoughts on “Morning folks, ready to be frustrated along with me?

  1. I hear and feel your frustration … I think half of the doctors job is just to frustrate us poor souls, they love providing roller coaster rides. We hope that more conclusive results come quickly and that they are indeed conclusive providing a clear and more obvious answer and not leaving you hanging in the unknowns. Feeling for you guys being all coped up in isolation for long term … hope you can keep your sanity … wishing you patience.

  2. Hey, this is Jasey, Prestons mom. I do not know if you remember me or not but Preston had a liver trans at UVA too, we are now at Cinci childrens he had a bone marrow trans for his immune disorder, that caused his liver to fail. I hate to read you latest news! If you have a chance email me, would love to catch up with you!

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