Wednesday, September 7, 2011


I'm feeling a bit better today so this will be a normal entry for me. Last night, after I finished writing, Naya's lung collapsed again. We opted to put another chest tube in and it helped her quite a bit. It was completely terrifying though. Again. Sometimes, I feel like I'm living in a nightmare. I actually have to remind myself that I am not dreaming and this is real life. And it sucks. I'm so exhausted, it's been 6 weeks and they still have no idea whether she is going to live or die. They still have no clue as to what is wrong with her. They know she went into septic shock but they still don't know what caused it. That's the part that's so damn frustrating - we have no idea how this happened. It could have been some disease that she has that they haven't figured out yet or it could have been some random incident. They have NO idea. They also can't tell us a prognosis because she is still too sick. They have hope and don't want to give up but no one has any idea if she's going to survive and if she does, what her chances are of living a normal life.

This is what Dan and I have been contemplating for the last few days - what is her quality of life going to be like after this incident. We know she's obviously going to be behind developmentally but is it going to be something she can catch up with and live a normal life or is she going to be mentally handicapped? And if so, at what severity? Does she stand a chance of surviving or are we keeping on fighting because we can't let her go? Is she suffering? Is she going to continue to suffer? We have no idea. I wouldn't wish this situation on my worst enemy. It sucks. Period. This is why I have been in such a foul mood that last two days. My mind is going a million miles an hour and it's all on crap that I would do anything to not have to deal with.

One thing we did decide, is that she is still wanting to fight. She has a will to live that is evident to everyone in this unit, doctors included. And if she still wants to fight, then we need to let her. As one of her primary nurses said, she will let us know when she gives up and she's not there yet. We may be exhausted and emotionally drained and depressed and falling apart but she needs us to be positive. Which we are for the most part. We try to save all the negativity and shitty conversations for outside her room. She doesn't need to hear them.

Anyway, she had a much better day today and we are very thankful for that. Dan and I are going to head back "home" soon and try to get a good night's sleep as we are both exhausted and didn't get much sleep the past few nights. Hopefully, my attitude is a little more positive tomorrow. Believe me, I was much worse a couple of days ago.


  1. Tears. Thoughts. Prayers. Love.


  2. Dear Jamie, this is such a brave note you just wrote. We are so sorry you are all going through this. Know that you will do the right thing. Listen to you heart.
    Know you are loved~
    Nina, Auntie Jo and the family

  3. I'm SO sorry about what you are going through. I TRULY hope your baby girl recoups soon. I know what's like to have someone you love, get sick from something you don't even know what it is and doctors lack information on the subject as well. It SUCKS but all you can do is try your hardest and hope for the best. If doctors haven't given up on Naya, then there's hope she will overcome this. GOOD LUCK!!