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Wednesday, May 12, 2010

I am getting really frustruated....

So today I called up about my interventional radiologoy appt that was supposed to be tomorrow (the 13th), and I was told it had gotten bumped til the 27th (this is the appt where I talk about the pros and cons of the balloon catheters in uterine arterines, which could be blown up during surgery to slow down any major bleeding going on).  These balloon catheters have done really good things for many on the accreta board, and after utilzing them, quite a few only needed like 4/5 units of blood (vs the  average 9 units of blood needed.  Since hemmorhaging is one of my biggest fears this pregnancy, I am ALL for them.  So later on today, I got a call from maternal/fetal office telling me about all my appts they had scheduled for me, and I asked about that radiology one (to confirm what I had already found out earlier that day) and they told me the radiologist didn't have a need to see me and that if I needed anything after the surgery, they would just do it then.  Ummmmmmm, these balloon catheters go in right BEfORE the surgery.  Have my doctors changed their plans again?? Are they now opting to not use them?? 

I am getting very frustruated and discouraged lately.  At 26 weeks, I had an MRI they showed them increta, and an u/s that made them high suspect percreta (the absolute worst case scenario).  Everything was talked to me then about how they would go about doing the surgery.  I figured after that, we would keep a close eye on placenta and what it is doing, but no one has wanted to take much of a look at my placenta at all since then.  I have just had mostly the BPP's and one growth u/s.  The tech will peek in at my placenta in the beginning and then write complete placenta previa...and thats about all they look at.  Since I am nearing my delivery, wouldn't it be nice to take another look and really get a good idea what kind of situation we are getting into??  Back at 26 weeks, they said only a small area of bladder was involved.  What if its now some HUGE amount of bladder involved....but who would know, since no one checks anymore.  Not that I want to go in for another MRI, but wouldn't that be helpful to do again as well, since that is one of the best diagnostic tools for accreta/increta/percreta?  And then I get to my appt on Monday, to hear that they have been talking about leaving my placenta and uterus in this whole time.  Why has no one told me that??  I am not a big fan of this method, and from what I have read about it, its the "old school" way to treat percreta.  They have found more success with removing it all at delivery and doing whatever bladder/organ repair is needed.  But now I have to go for a meeting with gyn-oncologist and tell her that I don't want my placenta left in me unless there is no other choice...but I guess she is the one that is all for it.  Oh and I have been warned that she can be persistent and is a barracuda.  Goodie.  So all this is going on, and now my radiology appt has been "cancelled??" I guess, bc they will just do whatever procedures they need to after the surgery?  Have my doctors decided not to do the balloons now??  They were all for them on Monday.  Do I get a say in any of this??  Its not like my case has suddenly gotten less serious in the last 6+ weeks.  Actually, it could be more serious, but no one would now since no one checks what is going on in there with my placenta anymore.  Yet things are getting dropped, new things added...and I find out only by accident it seems.

I start to worry if I picked a group of doctors that doesn't know what the heck they are doing with this.  I am the only case they have of this right now.  The gyn-oncologist has the most experience with it and is the most important person to have there, but all the sudden I am finding out she wants to go a totally different route then she mentioned to me before.  I NEED to keep my faith that God lead me to these doctors and to this hospital for a reason....but just getting might discouraged as the surgery gets really close (22 days away), and things are still so wishy washy.  I am told one thing, and then I am told something else.   Over and over and over again.   Its enough to make the most sane person crazy.  And now I have to wait til Monday again to address all this. *sigh* 

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