DISCLAMIER~~ Some of the below information may seem as though things are worse or not improving that is NOT the case. She has continued to improve today and is still fighting just as hard as ever!! We are just preparing ourselves for the continued rollarcoaster. Some of my opinions and thoughts may upset some people or even make you feel as though I have given up hope. It has not, I just feel the need to share my feelings and hope that everyone understands me. Today the attending PICU Dr asked if he could refer us to the Palliatve Care Dr. For those who dont know here is a definition: "Palliative Care is specialized care that focuses on patients who are facing life-threatening illness or injury. The primary goal of palliative care is to provide expertise and treatment plans for symptom management, as well as spiritual and emotional support while considering the whole patient and their situation."
The Dr told us he doesnt think that Elizabeth is worse or anything like that but we know that her condition is life threatening, and we have no idea what the future holds. The constant back and forth with her being well and then being really sick and being in the hospital so much is concerning for the Drs and for us. He felt it would be benefical for Matt and I to have a resource to help us with making some very tough decisions regarding her care. Basically the Pallative Care Dr does nothing to treat Elizabeth, they are soley there to help us make decisions and provide information and support for managing Elizabeth's care.
We have known from the beginning that Elizabeth would decide what course she would go as far as getting better or worse. We realize that we have done alot of invasive and aggresive interventions to help her, and are now considering the most invasive thing possible. We can not go into this process blind and ignorant to the fact that it carries just as many risks as it does benefits. And I need to make sure that everyone else understands that as well. Lung transplant if needed is not a cure, but another treatment with side affects that could end her life. I think all of us are past the point of thinking that we are going to wake up tomorrow and she will be healed, for so long I kept that dream hoping I would just wake up and she would be better. I know that is what everyone wants and I would give my life to make it happen. But reality is she is and has been very sick. Even when it seems that she is doing "good" she is still a very sick baby.
Please dont think that I have given up hope that she will get better, I still think there is a chance if we do all that we can and give her the most support possible she can grow and thrive and have a happy, healthy life. I am getting my mind in the right place, of knowing that her life just may not be as long as I want it to be. I need to prepare myself for that and I need to be able to say that outloud and not feel guilty or wrong for being realistic. There are not enough cases of her disease to truly know how to treat or care for her, or what the outcome will be. If I dont prepare myself now, I am not sure I will be able to handle it when/if that time comes.
Today Matt went home to take care of some things and I was here alone to meet with the Pallative Care Dr. Lets just say I didnt like having tough questions asked and I hated crying in front of this stranger because Its hard to speak the words outloud that I am afraid. Its easy for me to sit here and type it in this journal and not be face to face with someone making me say it outloud. Being a police officer, I have learned to try and hide my emotions and not let things "get to me". I have tried hard to hide the hurt and fears I have. But I am realizing that i need to confront them or I am seriously going to lose my mind here ;) One of the questions the Dr asked me was how I thought Elizabeth's quality of life was, of course I described how happy and playful and smiley she is when shes awake and at home enjoying life. But then she asked me to step back and look at this entire year, and how I thought her quality of life was when I did that.
When I look at it like that it does seems pretty crappy! I mean she has been in/at a hospital all but 3 1/2 months this year. She has been sedated/paralyzed more time than I can count. She has had so many tests/xrays/echos/shots/drugs and other things done to her. Shes had tubes stuck down her nose and throat, catheters and temp probes stuck in her. And many other things that I dont even have the time to type out. She has relied on oxygen or machines her entire life just to be able to survive. Its just not fair! She deserves so much better and no matter how hard she fights its like she can not get a break.
Ok this has been long enough and I apologize for saying some hard things and hope everyone understands where I am coming from. I love Elizabeth more than anything in this world, and will do any and everything I can to improve/extend her life for as long as possible. But I refuse to make choices based on my greed of wanting her here for me, I need to know the choices we make for her are beneficial and will improve her life and help her. Everyone says Elizabeth has a purpose here, and I really think her purpose has been to teach me and everyone else. Our journey has shown me that we have to cherish each day and make the most of it. That is exactly what I plan to do. No matter how long/short her life is, I want to know that I did everything to make her know how loved she is and that she was as happy and painfree as possible.
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