Wednesday, January 6, 2010

2010 Will Not Be the Panacea...Back to the Hospital

Well, I had kept saying that I could not wait for 2010 to begin to hopefully get out of the disaster that was 2009.  Here it is 2010, and nothing much has changed for us.  Bean had her first biopsy of the year yesterday and it has come back a 3, which is really high.  So, we are being readmitted tonight (bed won't be available until 4 p.m.) to get a three-day course of IV anti-rejection medication.  This will also mean more trips to Stanford (a four hour jaunt from home - on a good traffic day) because we will not be able to space out the biopsies as much as we otherwise would.  Bean is looking good, seems to be feeling great and her echocardiogram came back unchanged, so all function is good....but, on the inside, she is not taking to the new heart as well as we and the docs would like.  It definitely is not the news I wanted to hear and I definitely would have liked 2010 to start out better, but at least there is a treatment and she is not symptomatic and I am  on Winter break from teaching right now.  So, all in all, it could be much worse for us.  But it is still a disappointment.

.................later that same day...........................

Well, we've checked into the Ronald McDonald house again (thankfully they had a room available for us, so we won't have to drive a distance to sleep and we can take shifts at the hospital), we're back in our old room on the third floor (we started out in a different room, but they are redoing floors and we got moved back over to the same room Bean was in for weeks after the transplant), we have a wonderful nurse on duty tonight, Bean has received her first mega-dose of the steroid, had a slight roid rage when her baba was late arriving, and is now sleeping soundly.  We have a room with a comfy recliner chair (thank goodness - the alternatives are pretty bad after a couple of hours) and I went to Andronico's to get snackage, so I'm set for the night shift and Jason will be here in the morning to give me a break.

For those of you unfamiliar with the transplant/rejection thing, I thought I would give you some information.  If you are a pro, please feel free to skip this part!  When a transplant is done, the new organ is seen as a foreign object, so it is attacked.  Most of the information I'm including here was gathered from CHFpatients.com, which also has some really interesting information on research being done to handle rejection.  I really do believe that by the time Bean is an adult, things will be much easier for her and other transplant recipients.  The chart on this page does a great job of showing the different levels of rejection.  The levels are taken by doing a heart cath, where in addition to looking at all the levels, etc. they also clip off a tiny, tiny piece of the heart tissue and bring it out for a biopsy.  The results are reported as levels, varying between a zero (very good) and a four (very bad).  Sometimes rejection is detected through other means - echocardiograms and signs of failing heart function (sweatiness, difficulty eating, etc.), but oftentimes, there are no outward signs of the rejection.  This is why the biopsies are done are regular intervals, to catch the rejection early before it starts to cause problems in the body.  Bean's very first biopsy, one month after the transplant, came back a level 3A.  She was placed back in the hospital (she had just barely been released to go to the RMH) and given high doses of steroids over the course of three days.  Her next biopsy, and every biopsy since then, has been a level 1A, which is pretty darn good.  Yesterday, she had what I think is her sixth biopsy, and it came back a 3A.  Sigh...we thought we were out of the woods.  We were moving toward more spread out clinic visits and biopsies.  She seemed to be really doing well as of late.  But, here we are back in the hospital again.  She is receiving the IV prednisone, along with a medicine that will keep her stomach from eating itself (ulcers) because of the big dosage of prednisone...every day for the next three days.  She has received one dose already.

This has really brought me back to reality as far as realizing what having a chronically ill child is all about.  So often, Bean just seems your run-of-the-mill baby - maybe a little on the small side and definitely in need of a lot of medicines, but still run-of-the-mill.  But, we will be dealing with hospitals and doctors and blood tests and heart caths and biopsies and echocardiograms and side-effects for the rest of our lives.  And all that is okay with me - its definitely much better than the alternative.

But, it does mean that you have to start to view life a little differently.  I imagine it is what it is like for those who have jobs where they are always on-call.  You have to be ready to go at the drop of a hat, and you may have to stay a little longer than planned when you go certain places.  You have to have a network of support people who can step in for you to make sure what needs to get done at home gets done.  I am thankful that we don't have other children, whose lives would be in upheaval during these times.  We do have animals - a dog, who goes to my parent's house or my sister's house, and definitely has some separation anxiety thanks to our four month stay away from home - and a cat, who does miss us, but not in the same way as the dog.  She also went to my parent's for the four months, but she doesn't really suffer any anxiety over it.  She loves it when we are home, but as long as she has food and water and a catbox, she is pretty self-sufficient. I also have to have enough of a dependable support staff at work that things will continue to function even if I am absent.  This is a tough one, but seems to be working out acceptably this year.

I have said this before, and I will say it again...this does mean that I need to be a more organized, more pre-emptively acting, less procrastinating person.  I have not followed through on a lot of what I set out to do in those areas of time management and organization....let's face it...I have procrastinated about getting rid of my procrastination.  Sad, but true.  So, I am going to take these three days to really start to examine my life to find ways of streamlining certain things, opening up time for other things and really getting on top of my productivity and time management.  I need to do more, be more and accomplish more.  And I know I am capable of doing it, but not without a very specific plan of action that I FORCE myself to stick to.  I am hoping that some of you out there can act as checks on me...be my external conscious so-to-speak.  I need to get on top of my life, my goals, and my desires!  If anyone has suggestions for helping me to do this, please send them my way in the comments!  I would love to hear them!

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