Wednesday, August 18, 2010

I Have Bad News and Good News....

Which do you want first?  Don't you hate when people say that?  I do...but, in this case it is true.  I'll do the good news first...and tell you that the bad news isn't really THAT bad.  It is more what I would call disappointing news than BAD news...Bean's annual workup showed that her new heart is working well and that the arteries seem to be holding up quite well.  All of which is great news...and to accompany that great news, here is a picture of Mackenzie after her pre-op Verced...feelin' pretty giddy...

Now to the bad news...(to visually represent this, I give you Bean after the cardiac cath, when she woke up with a Kedamine hangover that made her very, very grumpy and difficult to console):
So, the disappointing news was that she is once again at 1A status.  This is not devastating news as it is the lowest category of rejection, but in the end, it is still rejection and that is not good news.  She has only had one zero, which means she has pretty much been in some level of rejection almost the entire 13 months she has had her new heart.  So, we are back on the treadmill of changing the anti-rejection medication dosage, blood tests (next week), clinic appointment (one month from now) and biopsy (two months from now).  We were really hoping to get on the more regular post-transplant schedule of spacing out clinic appointments and biopsies by six months or more, but such is life and we will take it as it comes as long as the Bean is healthy and well. 
In addition to the 1A news, they also found her magnesium level to be very low (a chronic problem with her - and she already is on a pretty big dose of magnesium three times a day, which causes diarrhea, hurting her chances of gaining weight and also possibly ridding her body of the anti-rejection medication before its fully absorbed).  So, they decided to give her an IV treatment of magnesium while she was there.  This meant a four hour short-stay unit visit with an IV attached.  Bean was already ticked off because we were trying to restrain her to keep her arterial line site from bleeding (the line was out post-surgery, but we're supposed to keep her leg straight and vertical to prevent it from "leaking") - she hates being restrained and really wanted to be held.  After a while I picked her up and held her a few times because her crazy kicking and rolling moves HAD to be more threatening to the site than my holding her vertical for a few minutes...but it was a long and arduous couple of hours of trying to maintain her position.  Then she had this additional line going in which she kept wanting to remove (for those of you who were Carepage followers, you might remember her early experiences with removing tubes - ventilators, IVs, central lines - she's done it all).  So, the short stay nurse put socks on her hands and taped them down and she thought that was pretty special and proceeded to parade about the short stay unit clapping her socked hands and waving with me or her aunt behind her carrying the IV pump (those are my feet in the background):

So, we are back home again, with a lot of upcoming appointments - pediatrician, endocrinologist, PT and developmental therapy this week, blood draw next week, GI appointment the week after, now a clinic appointment two weeks later, and a biopsy the middle of October.  We are also working on scheduling an appointment with the regional center's nutritionist and occupational therapist to get her eating evaluated.  Its like a full-time job just figuring out my schedule!  :) 
I would like to end on a good note...according to the pre-op scale, Bean gained 9 oz since last month.  I'm not sure that its accurate - I'm interested to see her weight tomorrow at the pediatrician, since it will be the same scale as last time.  Hopefully its even MORE weight gain...but, I'll take the 9 oz.  And finally, a fun picture from Bean's first swimming experience this past weekend in the hotel pool...hope you all are well!

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