Monday, October 10, 2011

Very Difficult Night....

I can't even begin to express how I am feeling right now.
This has been the hardest thing I have ever had to go through. My emotions have been up and down and left and right. Today was hard, but tonight was even harder.
Spencer didn't know who I was this evening. Seeing him not in a right state of mind was heart-wrenching. His CO2 levels were just so high. They called me up as I was getting food with 2 of my dear friends and told me that they needed me to come over to sit with Spencer. He wasn't keeping his bi-pap on because he was so confused. I tried to explain how important it was because if he didn't keep it on they were going to have to re-intubate him. He understood for awhile but I think his CO2 levels continued to climb and so therefore he got extreamly disoriented and confused. He kept asking for Nikki. "Where is Nikki. Please go get here, she's in the other room" I kept telling him that I was Nikki and I was his wife, right there with him. He looked me straight in the eyes and with a blank expression told me "No you are not. You're not Nikki." If that's not hard to hear I don't know what is.....
He continued to be confused and then he started getting agitated. He insisted that his bi-pap was broken. And then he wanted to break it... He kept yelling for help. I'm not exactly sure what he was thinking was wrong but something sure wasn't right to him. He continued to try to break the facemask of the bi-pap. I couldn't stop him. He finally put on his oxygen mask and we had to lie to tell and tell him he was doing just what he was supposed to do. Gosh he was just so confused =( It was SOOO hard to see. Especially when he didn't know that I was right there with him.
As they were prepping him to intubate him he had a look of fear in his eyes. The poor guy. I can't even imagine what he was thinking seeing all the equipment. It was hard for me to leave but I just had to get out of there.
I rushed to Adam and Christines room - really afraid one of the nurses would catch me and ask what was wrong. I was trying so, so very hard not to cry and just lose it. The second I got in the door I broke down. They were amazing at comforting me at my worse. I can't even express how grateful I am that they were there for me tonight. I love them both so dearly. They've been an amazing support for me. Adam gave me a blessing and we prayed together. All things I needed so badly. They always know what I need when I don't know it myself or I'm to stubborn to ask for....

Tonight was just rough. I talked to his CF doctor and he told me that re-intubating him wasn't necessarily a set back. Him pulling the tube out was a set back but only because he didn't make any progress today. He was doing so fantastic yesterday.... but today there was none. That's okay though - baby steps and we can't go back and fix anything that has already been done.

I'm just having a very, very difficult night. My husband is slowly dying. There isn't anything at all that I can do about it. His body is giving up and his lungs are failing him. I knew that this time would come. I just never thought it would be so soon. I'm not ready to lose him. I'm not ready to be alone. I need him, so much. I want him in my life. To help me through my struggles, to be there with me when I'm happy. We haven't gotten to experience things we so badly want to. We have barely even enjoyed being married. I want that time with him. I want it more than I can ever describe. I want to grow old together. I want to feel his hugs. His kisses. Just his arms around me.

I want him to have a second chance at life. So we can do so many things. We can life so fully. I'm terrified that he's not going to get that chance. That his body isn't going to be strong enough to continue to fight. Maybe fight to hold on a little longer. But possibly not fight through a life or death surgery like that. I can't even imagine what will come of all of this. I hate the unknown... the what-if's. It's all I can seem to focus on right now. I feel like he deserves EVERY chance he can get at a new life. I just pray that that is in our Heavenly Father's plans for Spencer. I can't understand right now why it wouldn't be - but no one can.... and we never will. We just have to trust... to believe.... to hope.... to love... and to give it all up to Him. Never an easy thing to do - but sometimes necessary.

Whenever I'm down... hurting... crying... I go to Spence for comfort. He's my rock. My support. He knows all the right words to say. He puts things into perspective for me and I always feel so much better. It's so very hard not to have that right now. My friends have been GREAT. I have a wonderful support network of friends, but sometimes it just isn't enough, you know? I've found my better half in life. I've found my love, my best friend. I need him back. I'm so frustrated right now. It's just not fair for such an innocent, amazing, and special life to be given such a horrid disease. It's not fair that he's been given the crappiest cards. That he has to leave early. I don't know what the plan is.... but right now, I'm despising it.

I get really angry. At everything... I get mad at why this is all happening. I'm upset at our Heavenly Father for putting us through this situation. I just don't understand it! But then again I feel like I need to put our lives in His hands... to go to Him for comfort and support.... but then I flip flop back and forth between being so dang angry and then so blessed for what I've been given. It's hard. I keep telling myself that I need to continue to go to church, read my scriptures, pray.... but it's been so hard for me to do it on my own. Because I don't know where things lie right now. I guess it's all a normal process.... I am just at a rough place....

I don't know what else to say... Well I mean... there is A LOT that I could say - I'm just tired. Exhausted. drained. I'm done with it all. I'm just done. Ready for it to be over. But I am strong, and I will remain strong because it is just the only option that I have....


  1. Dear Nikki all I can say is we must all "TRUST IN GOD" yes you and Spencer have been dealt one of the crappiest hand of cards. It's hard so hard not to get mad or question the Dear Lord above but Nikki we must have faith and trust and believe that GOD will be with us to make it through anything. Yes I too at times want to question GOD and get irate but sweetie regardless of how much we can careless about Oh there is a reason for all this, we must all stay strong. I'm up and you are more than welcome to call if you can't sleep. Until we speak again I will be praying.

  2. My number is 937-301-5606 call collect if needed!

  3. Honestly, all I can say/do for you is, *HUGS*
    Nikki, let me know if there is anything I can do.