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Saturday, July 17, 2010

heading to Brigham and Women's hospital on Tuesday...

Well we have had enough.  When Heather (visiting nurse) came yesterday morning, she noticed the smell and the fluid, and then uncovered wound from wound vac, to find two new necrotic tissue areas, both quarter sized.  She said that she couldn't put the wound vac back on with these two areas, since she didn't want them to just keep spreading.  So she came up with an alternate solution for the time being.  And its time for a second opinion on this nightmare.  I actually ran into the wound care dr yesterday as I was working on signing releases for my visiting nurse Heather opted not to put wound vac back on bc of it, and he seemed unphased.  Actually said "Well these things take time" followed by " see you at surgery on Wednesday".  I know how to be patient and such, believe me.  But I don't think I have even HIT the healing stage yet.  I have had this wound vac for 3 weeks, and all the new tissue I grow gets "debridded" or scraped out every time these necrotic areas show up.  And this happens EVERY week.  I asked the dr at my last appt why tissue keeps dying/going necrotic inside me and he said "I don't know".  Isn't that something that we should be looking into at this point??  Wednesday would be my 5th debridment surgery since June 29th.  That is less then 20 days. 

So anyways, Doug called around to Brigham and Women's and Mass General Hospital (two of the BEST in the state-located in Boston).  Mass General was actually not as friendly as Brigham and Women's, telling us we would probably need a referral and not to expect to get an appt for 2 weeks.  Brigham and Women's gave us an appt on Tuesday, telling us to bring medical records.  So B & W it is.  I am nervous.  Especially since I am "supposed" to have surgery the day after.  I don't know if B & W is going to keep me there-really get into it and get some way more indepth answers or if they are going to simply concur with my doctors here.  Its 2 hours away from us, so I don't want it to be a wasted trip.  I hope they will test new things and help us get this dying tissue mystery solved.  I just want to heal.  That is it.

When I went in to sign releases for medical records, I had to do several separate ones.  One was for maternal/fetal medicine.  I was sent to the desk, and then one of the nurses that cared for me came out and had me come in her office.  She then asked what was up.  I told her straight up that I am just looking for 2nd opinion to see if there is something we are missing here on this wound.  I don't know if she was concerned I might be thinking lawsuit stuff or something, to pull me into office, but  i really have no desire for lawsuit or money.  I JUST WANT TO HEAL FROM THIS.  I want to resume living life in a "normal" fashion.  I am a crappy mom right now.  I am a crappy wife right now.  I am a crappy everything right now.  All I can do is sit on couch all day.  And then I sleep on the couch at night, with pillows to keep me mostly upright.  I have to take pain meds every day, which make me drowsy and feeling a bit loopy at times.  I can't even pull my kids into my lap for a hug.  I can hardly change a diaper, bc its hard to sit upright.  My kids make a lot of their own meals (cold meals of course) when Doug is not home.   Cereal and sandwiches, almost every day here.  I just want to be able to move around comfortably again (with a closed stomach), and be a mom and do my mom things every day.

So we will see how appt goes on Tuesday.  I don't know what to expect but just hoping for the best here.  Heather (visiting nurse) definately recommended going for a 2nd opinion as well, and she has been with us since the beginning.  She has stopped the wound vac for now, and she is dressing my wound with a dakin solution, which is diluted clorox bleach and baking soda.  Its supposed to kill any bacteria in there, as well as help remove some of this dead tissue.  It sounds scary, but she called up several experts on the matter and they all recommended giving it a try.  I was most certainly fearful of pain when she went to put it on my wound, but it didn't hurt (well nothing more then it already does 24/7).  For the whole weekend (today and tomorrow) I have to have this solution applied twice a day...and we will re-evaluate whether or not I can have the wound vac put back on on Monday.  Heather will be here in about 20 minutes and we can find out what a night's worth of the solution did to my wound.  Hopefully nothing but good....or at least with me staying the same.  I will take that. 

3 more days til we can hopefully get some more answers.  Monday, I pick up my medical records and I can finally see all the different bacterias I have been growing inside this wound (back when they were checking at the beginning of this all).  Just hoping that God will help lead me to the right people, so that I can finally get recovered from this and one day move on.  That seems almost like an impossible feat at this moment. 


  1. I cant believe you are going through all of are def a strong women of faith! Praying that with the 2nd opinion you can start the actuall healing process..not just physically but mentally too!

  2. Praying you get some answers, hun!