January 24, 2011
I couldn't sleep last night and as I laid in the hospital bed with Halie my mind was racing. I have been told many times to journal our experiences but I have started and stopped so many times. The emotions are too raw and I find myself waiting to work through how I am feeling before I post. Last night that changed. I read a post from a dear sister in Christ who is walking this journey with us and I was struck at why I am drawn to her blog. It's real, honest....raw. I have been so encouraged by her faith because of her realness. The fears and tears I can understand.... I can relate. I have put my heart out there a few times and it was freeing. I don't know why I hold back and hide behind others... (Thanks, my friend, for being my voice, you know who you are) I am going to give it a go. Letting go of my pride and fears and be the voice for this this precious warrior of God. If she can do it so can I..... So here goes..... Today I have spent alot of time thinking finally allowing myself to try to work through all that has happened this past week. We checked in last Sunday knowing this would be hard but not really understanding. The side effects and possible side effects lurking in our minds seem almost surreal. Your afraid but she's done so well there is a part of you that believes she will sail through blowing the doctors away by how amazing she did. But then reality sets in and side effects on paper become reality and the really scary ones are thrust upon you and all you can do is cry out to God for help. Monday a few hours after the ch14.18 started she was doing so well our fears were kind of stuffed away when she first started letting us know she was in pain. They tried to control the pain with morphine but it was hard to get under control ... when finally it seems they found the magic dose it was decided she needed a foley catheter and while the nurses were trying to place it she stopped breathing. All I can say is my world started spinning and for a few seconds I honestly thought we lost her. As Jason and I tried to stay out of the way to let the response team work on her our world stopped... We held each other and silently prayed as the doctors quickly told us she had a strong pulse and would be fine. They needed to act quick so the ICU team stepped in and tried to find out what happened... was it the morphine? or the anti-body? Everything was stopped and for a moment we were discussing whether it could be restarted. They gave her a drug to reverse the effects of a morphine overdose to try to see if that was what happened and quickly she screamed out in pain. The doctor looked at us and said he was sorry but to counteract the overdose he had to take away all the pain meds. It would slowly start working again but for several minutes she felt the complete pain of the antibody and it was heartbreaking to see your child in such intense pain. I have to admit hearing her cry was mixed emotions as a mom you hate to hear your child in pain but to hear her, knowing she was still with us I can't explain the emotion. I could not stop thanking God. Immediately I started questioning restarting the antibody they moved us to the ICU to better monitor her and we requested to meet with Halie's fellow and main doctor, Dr. Louis before we could even consider restarting. You have to understand there is not alot of time to make a decision. It's a clinical trial and the protocol is strict so, all things considered, her reaction was not from the antibody it was from the morphine, so we continue..... the next few days were spent in the ICU with low blood pressure and fevers up to 105... We are now back on the 9th floor. Our home away from home and waiting to find out what the next step is. After the antibody finished she spiked a low grade fever and bacteria grew from the culture on her central line. The bacteria has tested positive for 2 days and we are waiting to see the results from today. If it is still positive we will have to look at getting her line removed and a new one placed. Once we have more information I will let you all know. For now please pray that the bacteria is gone and that we can treat it with IV antibiotics and that will be all that is needed. Lord please help....Halie is in remission and yet we are still fighting for her life and we must persevere. We are not strong. We just trust a God who is and daily I fight the inner battle that wages in my soul.... why?
at 1:45 PM