54 - Sierra's results

Today we received the final word on Sierra's antibody rejection.  And drum roll please....It is unchanged.  We are not surprised at this finding.  In fact, we would have been surprised if it was changed.  Here is the summarized treatment we are doing now.  She will not do plasma pheresis (for now).  They will keep her port in until her next biopsy, which will be in May.  They will again decide after that biopsy whether to take it out or not.  She will be started on another immuno suppressive drug called Cellcept.  There has been some success found in adding a 3rd line of suppression of the immune system.  Lindsey is presently on this drug and Sierra has been on it before.  Sierra has clinic and an echo on Wednesday and they will be watching her more frequently.  I don't know yet what "frequently" quite means, but we will take it one week at a time.  They are mentioning a possibility of another transplant, but do not feel it is anytime soon.  She is acting great and is not showing any symptoms of the heart being under stress.  If she starts showing signs of congestive heart failure (we are pretty sensitive to those), then we are to let them know immediately and we will then discuss a transplant.  We could have months to years before having to visit this.  We seriously cannot plan more than the week ahead of us.  We are learning to live that way.  It has been a stretch for my major control freak side of me.  But hey, it is best just to go with the flow, right? 

Lindsey is doing awesome! They turned her steroids down a little bit more.  Each negative biopsy she gets, her steroids gets turned down.  The idea is that by their year anniversary, if all has gone well, they are completely off of steroids.  Lindsey has therapy, clinic and an IV infusion this week.  It actually is a pretty light week for her. 

Her little sassy self is coming out of those cute puffy cheeks more and more.  Tonight we were eating dinner, I was in the middle of asking Hunter to wash his plate off and put it in the dish washer.  She interrupted me and told him on top of what I had already asked him what else he should be doing.  I explained to her, "I got this Lindsey, thank you though."  She smiled and said, "Well why does Sierra get to do it?" I explained the age difference and the idea that Dad and I are always boss.  Sierra steps in when babysitting.  She just grinned with those cute prednisone cheeks.  Good to have her back!!

Jason made it back home to Oregon yesterday to finish out the last grueling week of tax season.  He will return on Monday.  We sure miss you dear! Good luck this week! Thank you for all your hard work, it certainly doesn't go unnoticed.