72 - Winding down the Week

A quick recap of the last few days.  Wednesday, Lindsey had clinic.  There was really nothing to discuss in respect to Lindsey.  She is doing absolutely amazing!  In fact, I really didn't have any questions for Lindsey, most of the time we talked about Sierra.  To finish up with Lindsey, she will have a biopsy next Wednesday (asleep), and then another one on the 15th of May.  After that, she goes to monthly biopsies.  Therapy she is doing awesome.  The therapist, Heidi, is doing a great job of coming up with new challenges for Lindsey.  She made it 15 minutes continuously on the elliptical.  That is her longest stretch of consistent exercise.  She is very close to being ready to go home.

As for Sierra, to review her latest.  Her biopsy was unchanged from last time.  They have started her on a new immunosuppressive drug called Cellcept.  It will take at least a month for the body to show if the Cellcept is helping or not.  She has a high level of donor antibodies in her body.  Lots of transplant kids can have high level of antibodies that don't do anything.  Hers, however, are actually attaching to her heart muscle.  This is making her muscle have to work harder to contract.  They are noticing the antibodies even around her coronary arteries ( the arteries that feed the heart muscle blood).  So what this translates into, it is definitely not good, but they are trying various treatments to fix it.  Not sounding real confident that they will work.  Meaning, we have no clue what our future holds. IF Sierra's heart pressures are unchanged or less in her next biopsy on May 8th, they will take out her port and possibly let us go home for a little bit.  IF they are higher, then the port stays in and we start another round of plasmapheresis with a stronger IV chemo agent.  This is another 6 weeks of treatment with a biopsy at the end.  Sierra is of course acting just fine.  She really is her happy, usual, self (which is encouraging).  They are still continuing IVIG, which she had yesterday.  Jason and Megan left the Oregon coast, stopped at the zoo in Portland, and then at Multnomah Falls.  Continuing on to Eastern Oregon where they headed to bed at home around 10:30 pm.  Sierra and I arrived at the Short Stay Unit the same time they left the coast.  We left the hospital same time they were heading to bed.  It is amazing that they can go across the whole state of Oregon with stops, in the amount of time it takes us to do IVIG.  It is always a LOOONNNNGGG day.

On a lighter note, Wednesday night the Rainbow Chef Keith, came and did his cooking class for the RMH kids.  Hunter, Gage and Lindsey all participated.  Sierra came down at the end after finishing homework.  They had a really good time.  They come the last Wednesday of every month.  Who knows if we will be here or not.  Sergio is doing well.  He went up to 3 west today.  Pretty amazing considering his surgery was 4 days ago.  He was weak and tired, but looked really good.  Enjoying a low key weekend and looking forward to having Megan and Jason back.

Gage just finished popping a strawberry in his mouth.  He was caught in the act!

Sergio with his new heart.