Optimism....

Today started out rough but ended well. Getting in there to see Spencer was very nice and he had an excellent nurse.... but the improvement that I wanted to see just wasn't there. I was hoping his vent settings would be lower today. Instead they remained the same due to his CO2 levels being a little high. They did take him off the sedation but he was still pretty tired because of the CO2 so I didn't get to talk to him much. Our friend Kristin came over. It was so nice to have her there! We talked and joked around a whole bunch. She's fun to be around and we love her =) Thanks for coming up! We've missed you!!!!!

After she left I started to feel a little bit better. When things don't go how I hope that they will - sometimes I just tend to not have as much optimism about the situation. Usually I try to stay very optimistic, just knowing things will get better. But I tend to get caught up in my own little world and it brings me down. Even though there are days that I really don't want to, it's good to talk to people about what's going on because I tell them the good things... the things they want to hear and keep away some of the negative things. It does me a lot of good to be forced to focus upon the positive.

I hate when I feel like my optimism is running dry. Makes things so much harder, of course. It does no good for me, and definitely no good for Spencer. I'm glad I was able to turn around a little bit today. Stopping the sedation was really a big move. Him being more alert should help things improve. Before, we'd get him off the sedation and he'd pull his breathing tube out - so I hope now we can keep it in tact and get him to slowly getting better!!!

Spencer got ordained to be an elder 2 days ago =) I was so very happy for him. He's been wanting this for so long, just hasn't been able to do it because he'd always get sick. But they felt like it was time to get the process moving and so the stake president came up along with the ward mission leader and his grandparents. His Grandpa ordained him and it was just fantastic. Knowing that my husband now has the authority is amazing. I can't wait until he can use it; especially to help me out. I've been wanting this for him!!! He doesn't remember it - and I REALLY wish he did because it is a big step in his life - but he's grateful that it was done.

I've had so many spiritual encounters since Spencer has been sick. It's been easy, yet hard to rely upon our Heavenly Father. I want to put everything in HIS hands... but it scares me at the same time. What if His plans are to cut Spencer's life short, now.. It pains me to think of that. I know that there is a reason, but I just want to think that Spencer isn't done here on Earth. I want to think that everything is going to get better. So it's hard for me, right now to put the situation into the Lords hands.... but I'm certainly trying, and getting there.

I've been reading the scriptures a lot more recently. I've drawn comfort and strength from it. I'm not one that usually reads them. I like reading about things in the scriptures that pertain to my life... I want to read something that I need to hear and not always does that happen. But I found on the church website a handy little "Guide to the Scriptures" and it has really made scripture study much better and enjoyable for me. I am able to look up something specific that I want to read or learn about, find it... and read verses that pertain to that specific topic. It's really helped me.

I looked up sickness the other night and found a scripture that I really liked in Doctrine and Covenants section 66:

"Lay your hands upon the sick, and they shall recover. Return not till I, the Lord, shall send you. Be patient in affliction. Ask, and ye shall receive; knock, and it shall be opened unto you."

I just love this... I've heard it before and every time I read it something inside of me just... clicks... like it's exactly what I needed to hear. There are a few other verses that I have jotted down; but I'm sure I'll share at a later time. I'm glad that I'm able to read again... and that it's enjoyable to me. I'm getting so much out of it. Spencer said that he wanted to read together every night. I'm really looking forward to it. =)

I just think one of the most important things that we can do at this point is draw close to our Heavenly Father... It's the only way I know how to get by....

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....

Picture of the day....

This is Spencer after taking a nice WALK down the hallway today!!! GO SPENCE! Ah!!!! He took his first steps today in THREE weeks!! =D He was fully equipped with an IV pole, catheter, suction, chest tube + drainage, ventilator, feeding tube, leads and pulsox!! GO SPENCER!!!!!

He's my FIGHTER!!!!! <3

Rough evening.

I'm just having kind of a rough time tonight. I'm just really missing Spencer. I know I can go and see him... I can spend time with him. But it's not the same. I am just waiting for that moment that he can give me a giant hug. That I can just sit there and cry in his arms.. I want to be the weak one for awhile. I know people say strong with the best intentions, But I'm tired of hearing it. It's not like I don't already know that I need to be strong. I have to be. But I just don't want to right now.

People ask me what they can do... I just don't know.. Take the hurt and ache away for awhile? There is no way you can do that. I have things under control... It's just my mental and emotional stability that I am struggling with - as everyone would. A lot of times when people catch me I am doing okay... and so they don't see the side that's really hurting. It's fine to hurt.. I know that. It's fine to have my moments and be upset - I get it... but It's just crappy to have to go through.

My heart just aches. I'm not ready to go through all of this. I just want him to get better. To be able to go back home just like things were. Working for improvement. Improvement. If only that's what could happen. We're going on three weeks of this and I know it's ONLY the beginning. It's hard for me to fathom how hard things are going to be.

I just want a life with Spencer. I want to take all the hurt and pain away. I wish it was me instead of him. I hate seeing him having to go through all of this. It's just not fair. I don't know what he did to deserve any of this. And that's the thing... He didn't. It just happened.

My mom gave me a different way of looking at things. Maybe our Heavenly Father is putting us through a transplant right now so that we can live our live to the fullest with the time we have left. Even fuller than we would be living with all this stuff we've been living with.

I keep trying to think of all the positives, not negatives. It's hard, but it's whats keeping me sane and helping me get through it all. I just wanna go home WITH SPENCER. It will come I. At least I sure hope it does.

I'm just tired. So tired....

Words From Spencer

Today Spencer was very alert! He's off the sedative now and they are trying to keep him off! =) I'm so happy! The vent settings are looking pretty good right now as well. They are trying to get him weened off of it and I have hopes that he can get off of it within the next couple of days. He wants me to make sure that I talk with the doctors tomorrow to see if he can get off it tomorrow ;-) What a trooper! He's going crazy having the restraints on him. I try to undo them every time I'm in there so he can stretch and scratch and everything. I guess the night nurses tonight didn't like me for that.. oh well. Usually they really don't care. Wasn't too big of a fan of his day nurse - or night nurse. Oh well. at least they USUALLY change daily so I hope we won't have them again for awhile.

Spencer is communicating through typing to me on my computer. I open up a document, make the letters really big so he can see them and he types what he needs to say if it's important enough. So good to see that! I wanted to share some of what he's been typing to me... Loved the first thing!!! Enjoy....

(I was talking to him about everything that's been going on, updating him... telling him i've been there every single day for him and I'm not going anywhere... He then wanted my computer to type this.....) "I love you nikki more than you'll ever know."

(I guess he's been trying to communicate to the docs that he needs things and he is having a hard time getting them to understand so he was saying he was frustrated...) "The drs never listen, or well i can't talk"

(Spence was telling me how much pain he's been in... He feels like the doctors aren't listening to him and understanding how uncomfortable he is) "I'm miserable. pain"

Loved being able to communicate with him today! He's the best!! <3 Love him so much! =)

I sat down tonight and wrote... This is what I came up with - 1/4 of a completed poem. I want to finish it but I just can't find the right words right now. But I was proud of it because I feel like it describes how I am really feeling through this whole ordeal. I contemplated sharing it because it's NOT completed.... and it's so broken up not to mention I might change parts of it...But I feel like it says so much to covey how I feel... I am going to come back to it at different times and finish it eventually I hope.... Just wanted to share...

I sit and stare with words unspoken,

The news I got – my heart feels broken.

“He's been admitted to ICU…

There’s not a thing that you can do.”

Fear runs through me, through my veins,

I can't feel anything but pain.

Not physical, though it's what I wish….

It's in my heart, I just feel sick.

Fear runs through me as I sit and wait,

I wish this was a big mistake.

With levels that are off the charts,

This news I got – it is no good

How I'm coping... Pic of the day...

Lazy Sunday... at least one of us gets to enjoy! lol Spencer is sleeping away. They lowered his sedation rate but he's still just out like a light. Of course I would love to see him being able to communicate a little more, but his body just needs to rest; it's hard to let him sleep, I always want to talk his ear off!!! We'll get there though... My phrase lately... Baby Steps... And it's oh-so true. It's been a roller coaster. I'm ready to get off now =)

I just wanted to write a little bit about how I am doing. Obviously you all know how Spencer is doing because I write updates about him every single day... Sometimes multiple times a day. But I want to take a moment to especially thank those who have made the extra effort to ask how I am doing. Being the caregiving is EXTREMELY hard. I knew it wouldn't be easy when I married him... but I did it anyway =)

Honestly - Some days I am okay, some days I'm a mess. The last couple of days have been okay... frustrating, but okay. I didn't cry once yesterday - and I can't say I've had a day like that in about a week! =D I'm finding it a little easier to cope now that all my friend ARE in the hospital. I can stay at the hospital and hang out with my friends, yet I can go to Spencer's room to see him and check on him whenever I want. This has been the easiest thing for me to do.

I've tried to stay home a couple times for the day (today included) Because I know he's being taken care of. But after about 1:00 PM I just go CRAZY! My stomach does flips and has so many butterflies in it... I get really antsy and can't sit still. I can't focus because my mind is elsewhere... For my own sanity - I need to be at the hospital with my husband. I know it may sound strange, but right now I'm taking comfort in being in the hospital when I can. (Isn't the hospital the LAST place you usually find comfort.. ya i know lol)

I've had some offers to go hang out with people outside of the hospital... mainly his own family asking me.. And I REALLY appreciate the offers. Please know that I'm not trying to avoid anyone... I'm not trying to make excuses because I don't want to hang out. I love hanging out with people and playing games! I really do! But right now, for my sake - I need to be at the hospital. I have tried to run to Smiths, or out to Subway to get a bite to eat - and after about 45 min I find that I NEED to get back to the hospital. I may not stay in Spencer's room for more than 30 minutes at a time... But just knowing I can go and see him at any given moment makes my mind at ease, my Anxiety A LOT less, and it helps my depression.

Not to mention... and it might sound weird to some people who don't understand... When I'm around "healthy" people outside of the hospital.. doing amazingly fun things.. I kind of get depressed. Because I want Spencer better SO BAD. I want to do SO many things with him. I want to live our life. It's just been kind of easier for me to not think about the things I could be doing. It's easier to be around the sick and entertain my friends who are locked up in the hospital sharing some of the same emotions I am. And It's hard for me to have a good time outside of the hospital... I can't freely express my emotions if I need to (ie cry, or just meditate to myself) if I'm outside of the hospital with friends. Here in the hospital I can easily go find a quite place and just let myself feel what I'm feeling - which is very important for me right now because I've been through a roller coaster of emotions for the last 2 weeks. I also worry if anything is going on.

Just take my word for it - It's easier right now if I am at the hospital. If you would like to - I'd LOVE for you to come up and spend some time with me for an hour or so... just know that shorter visits with me are better than longer ones because I need to see Spencer every couple of hours to just keep my self sane... And if you want to see Spencer - let me know!!!! There is no problem at all with that.. Just please make sure you are not at all sick. His body is under SO much stress he can't afford to get another bug in his body to fight. So if you've had a cough, sneeze, runny nose or watery eyes or fever or just anything of the sort.. please refrain from visiting him. It's not that we don't love you!!! It's just that I'm trying to keep my husband alive...

So this is kind of how I've been coping. Might not make sense to some - but please respect that I don't want to go out and do anything right now. <3