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!

Monday, August 16, 2010

Summer is Officially Over! Annual Heart Cath Tomorrow

And to that I say "bleh" - which is what it looks like Bean is saying in this picture!  Sorry I've been out of touch for the summer, but it was quite an adventure with my husband being gone for six weeks, a two week trip to AZ (half way through which my husband joined us), and just a lot of chaos in my life and schedule!  But, its now officially over - I start back to work on Wednesday with meetings and office hours on Thursday and then classes begin on Monday.  So, I plan to be posting on a more regular basis now that I will have to have a schedule of some sort and I will fit blogging into that schedule.  I will do another post (or posts) with some recaps from our summer and all of our adventures - of which there were many!  Bean has totally changed since the last post in June!  She now has a lot more teeth (although still not many in the very front - she has two on the right top and one just barely breaking through in the middle bottom, but the rest in the front are still hiding out)...she is walking everywhere...and although she is not really talking yet, she makes animal noises like a champ!  She has been a walking, babbling baby for the past two or three weeks and it makes her a barrel of fun to be around! 

Tomorrow is Bean's annual heart cath.  Although she has had many heart caths, this one is a little more extensive since it is her "annual".  Her regularly scheduled caths include the biopsy for rejection, but her first one included a coronary angiogram - this one will repeat that test to make sure that she is not suffering from rejection issues that may be more long-term than the biopsy is designed to test for.  She is on medication to lower these risks, so our hopes is that they detect none, but she will have this done every year for the rest of her life to catch any problems early on.  We are hoping that she will repeat the same zero for rejection that we had last biopsy and all will look good - that will mean less clinic visits and more time between the heart caths, which would be great for both her and us!  The drive to Stanford is long and with the hospital visit tucked in there, those days are extremely tiring - so the fewer we can have, the better! 

In addition to that, we have our first endocrinologist appointment this week - where we might find a source for her lack of growth.  No guarantees on that front, but it is possibly a hormonal issue which they may be able to solve.  I am getting used to her petite stature, but it would be nice to get a little fat on her before winter and cold/flu season rolls around as that fat is her reserve if she gets sick.  We dodged the bullet this past winter, but she was not nearly as active as she is now, so keeping her isolated will be much tougher this year.  So, figuring out how to have her gain some weight would be great.  She is 18 months old and is wearing mostly 3-6 month clothes (some pants have to be 0-3 months - others even newborn, although they look like flood pants, they fit her best in the waist).  We are getting lots of wear out of her clothes, but we'd prefer a healthier weight!  She is still seeing her developmental therapist through the Far Northern Regional Center, and will soon be consulting with the nutritionist and the occupational therapist about her eating - just to cover all our bases.  We got good news from the eye doctor (she has a "lazy eye", especially when she gets tired) - no surgery!  She may need to wear glasses because she is far-sighted (how they can tell that in a baby I will never understand), but he is definitely not advising surgery for her.  Such a relief...

I think that about covers this week in the life of the Bean.  Again,  I plan to do some "What I did this summer" posts as school gets started (just to be able to revisit summer will be good for those first few weeks of total chaos at school) and I plan to do some additional posts on health, medical and educational resources for parents.  I'm sure I will come across some other things to post about as well!  So, stay tuned!  We should get some basic results from her cath tomorrow afternoon after the surgery, so I will try to get something posted then, but it may have to wait until Wednesday when I get back home...it all depends on internet accessibility!  Either way, I will update in the next couple of days!

I hope you all had a great summer and are looking forward to a good fall as well.