Thursday, February 6, 2014

rollercoaster

Im writing this blog from the hospital.  Waiting for A and B to fly in to Rochester.  I arrived at the hospital this morning to find out that they were not going to extubate Capri. 
  • Her xrays looked better
  • She was back to full feeds
  • Her chest tube is out so she will be able to take deep breaths
  • All of her steriod shots have been given
  • She has had 3 doses of antibiotics
Everything on paper looks good.  Why are we not taking the tube out? Troy (our nurse) was upset as well.  He fought for her.  He told the doctors she was ready.  I hate this feeling of having no control.  The last few days things have been getting better. I have been happy and felt like things were finally going our way.  So quickly that feeling goes away when you take a step backwards.  That pit in your stomach that is oh so familiar came back as i tried to choke back the tears.  I asked Dr Angunga why? She is ready! I explained my frusteration through my tears and he stayed behind me and was silent.  I could tell in his eyes that he agreed with me.  He thought she was ready to.  He told me he was sorry and left the room.  I asked Troy to call the doctor who made the decision to wait one more day so he could explain.  A few minutes later Dr. Bosch came in.  I explained to him that i was frusterated because i was told yesterday that it was imparitive to get that tube out so we didnt cause permanant damage to her vocal cords.  This "new treatment" they were doing shakes her lungs for 20 minutes every 4 hours.  I asked him if he truly thought that an hour of shaking her lungs was really going to be benefical enough to out weigh the risks of keeping the tube in for 24 more hours.  We talked about the risks of the trachea and why we wanted to give her the best shot possible.  I understand all of this though.  I have spent the last week and a half being told "tommorow we will take the tube out and see how she does, if she doesnt do well we will need to do the trachea"  Everyday i am told not today but tomorrow we will do it.  It is exhausting.  At some point we just have to do it.  Her lungs arent going to be perfect while she is on the ventillator.  Every doctor has  told me that.  It is as good as it is going to get and we need to try before she gives up fighting. 

He told me that he honestly did think that this treatment would help and would give her a better shot so i relunctantly agreed to wait until tomorrow.  I really hope that we will look at her xrays tomorrow and they will give dr bosch a big head and he can tell me i told you so.  I cant keep doing this everyday.  I cant risk permantly damaging her airway for the hopes to avoid a trachea.  We have to let her try.  We have to give her a chance.


As i've sat by Capris bed I have been reading a Jodi Picoult book.  She is one of my favorite authors and as i was in a hurry one of the first days i was here i saw the section with her books and quickly grabbed one off the shelf that i hadnt read.  As I have gotten into the book I have discovered its a book about a mother who lost her child and husband while she was pregnant.  After she gave birth she discovered her child had a heart issue and is now waiting for a new heart.  I dont know how i picked the one book out of two shelves that had to be about a heart kiddo but now i am too far into it to stop.  Tonight It talked about her daughter going into arrest.  Watching them place the pads and her daughter jacknife off the bed.  It brought back our first night in the ICU a month ago.  watching them shock Capris body again and again.  I will never be able to get that out of my head.  It is something that will haunt me forever.