Thoughts for the day....

Happy Halloween! Wow Oct. went by so fast. Sometimes I think it should have felt like it dragged on forever since I haven't been doing anything - but I guess the days just fly by when you're sitting in a hospital room day, after day, after day. Who would have known! Kind of feel like this month was completely wasted.... well - it was.... but I'm glad I still have Spencer around to waste the month with, you know?! Guess that's one way to look at it.

I'm getting super impatient. Trying not to show it at all, and I haven't said anything to Spencer about it... But I'm just going CRAZY!!!! I think some of it this time since the move to IMCU is his nurse. She tends to take forever in the room and takes her time... Not exactly sure why she seems so slow. She's pretty nice - but she also does EVERYTHING for Spencer when he should be trying to become a little bit more independent. I spoke up today when she was brushing his teeth and said that it would probably be a good idea if he did it himself. I hope that maybe in the next couple of days he'll get a new nurse. His night nurse is GREAT - we know her from the CF unit =)

I'm also getting kind of frustrated with the timing of everything. I come up to the hospital around 12 or so and he's sleeping. He tells me to give him 30 more minutes so I do... I come back, and he has to do his treatment. This takes 20-30 minutes so I just get on my computer and chat with the RTs. Then his nurse comes in to give him his meds. It took her 20 minutes to do this; how can it take 20 minutes to give meds and draw blood? lol After that they give him a bed bath which so far we're going on 10 minutes and they are working pretty slowly. They are now trying to get all of the stickyness off... I can tell this is going to take awhile!!!!! >.< They are then going to change his trach dressing which is going to cause him some pain which will probably get a little unbearable so he'll want some pain meds. They won't give him fentanyl so he'll get oxycodone which puts him to sleep for about 2.5 to 3 hours. We are still waiting for physical therapy to come in. Word is that they want to get up and walk with him, which is great. But he's going to be on pain meds and won't be worth much for his PT session... and that's the most important part.

He gets REALLY tired from PT because they have him walk and then sit up for about an hour. So he'll sleep for about an hour after PT and then it's treatment time again, medication time. etc. When do I get time for him >.< They have visiting hours here but thankfully I have gotten to stay in his room during the hours because he has an amazing night nurse. But that's like the only time he's awake.

I think we need to talk with his care team about how we should do things. I feel like they are doing everything backwards and not very efficiently. The doctors on MICU felt that it was very important for him to stay awake during the day so he could get off the vent and sleep at night. I guess that has went out the window because they don't seem to be caring if he's sleeping. They never wake him up.

I am also REALLY frustrated with the doctors. Communication is not happening. I hope to fix that tomorrow. We have a meeting with the nurse coordinator and so I hope to get his CF team in here to discuss a ton of things. I thought we were supposed to be weeing his vent settings down but they haven't been touched since the surgery for the trach.... I'm just so confused. I feel like everyone is on a different page. -sigh-

On a positive note.... Spencer can swallow. They are letting him drink a little bit and eat soft foods. I'm pretty sure he's ecstatic about this!! I haven't really gotten to talk to him about anything since staff has been in here constantly...

day 42 - my patience is wearing thin.... my frustrations are getting high... I need to see some improvement ... like.... MAJOR improvement!!!

And PS.... yes they are still giving him the bed bath/changing trach dressing... We're currently going on 20 minutes and no, they are not even half way done O.O

We've GOT to get out of here. I am just going insane. Sure part of this has to do with my mom leaving and REALLY wishing she was still here to help me through things... but a lot of it is just I'm SOOO tired of being in here. I try my BEST to keep my spirits up, my attitude in check, and my mood positive... But when Spencer has a rough day mentally and emotionally I just lose it. That's when it's MOST important that I stay strong. But I just break. I want to get out of here SO SO SO bad. I don't just want to, but I need to. I need to see improvement with Spence. The vent settings have been the same for over a week now and I'm not sure why. I'm frustrated because the transplant discussion was put on hold for what I thought the reason to be is because he wasn't off the ventilator and then I find out it's because he doesn't have enough social support to get him through transplant....... But just the fact I wasn't told this - that people aren't communicating and telling me things is killing me! I NEED TO KNOW! I need to get things changed so that he CAN get a transplant and a new chance at life.

I'm just sick of this all. I feel like I'm really getting to my breaking point to where I just can't do this anymore. My mom said it best - I'm kind of in a state of denial. Just hovering there. Not wanting to accept anything. Talking about transplant is seriously, REALLY hard for me. Ever since it's been brought up these past couple days, to start fundraising for it, inside i've been a mess. It hits like a brick wall. It's real. I am SO used to going through everything with Spencer. Asking him for advice on how to go about things... for help. Having him go to meetings with me... talking with his own doctors... I'm having a hard time doing everything myself.

I have these little tiny goals every day set in place for myself. I was finally starting to actually take things ONE STEP AT A TIME... ONE DAY AT A TIME... and to try not to expect anything at all. And then I feel like I'm being forced to think about the big picture.... think about how serious it is.. Think about the life or death situation at hand. Remember that even though Spencer is improving, he could take a turn at any second. It terrifies me. I feel like everyone else is moving on while I am still back in left field trying to catch up... Failing to catch up. This is so hard for me and I feel like no one gets it except for my mom. I have people telling me that it's ok... I feel this way too... but they don't. They just don't get it. They have their husbands to go home to every night... To eat dinner with and discuss the day with... to just sit there with, even if they don't say anything. I have that - but only to an extent.... I can't take him home.. I can't stay here. I have to go home to an empty house. Sure I could stay with a friend. But it's not the same.

I'm just struggling today. I miss my mom. She was the biggest help while she was here. I was really able to keep my mind off of things. And now that she's gone back home it's been hard. I'm so dang lonely. I have been up at this hospital for 41 days.. EVERY SINGLE DAY... usually for 10-12 hours a day... I honestly didn't realize how lonely I was getting. To have Spencer sleeping all the time... but still wanting to be here... Just sitting here. Hard for me to do anything for myself. Wish my mom was still here. I need her. Being around other people is okay... But I don't want to be asked about Spencer all the time. It's not all about him. It's about me too.... =/ So it's even hard to be around other people...

I will adjust to everything again. it will get better. I'll get used to it and accept it. But right now it's sucking. =/ I just can't wait for 3-4 days to pass... Well actually preferably this whole week because I have a lot of discussing to do with the docs that I'm just scared of doing. I don't know the questions to ask or anything. I don't know the first thing about any of this - yet I'm doing it... God give me STRENGTH....

I'm just going to say this... Maybe not for anyones benefit by my own... Just to remind me...

"Everyday may not be good.... but there is something good in every day..."

The good in today: Spencer got moved to the step down unit....

Thoughts from the Terminally ill patients (and their caregivers)

I found this on Stumble Upon and it really struck a note with me. I loved it - everything it said, because it is SO true. I think that not only is it talking about the patient who is terminally ill, but the caregivers as well. I really wanted to share it and maybe some people will understand where I'm coming from. It's not to be rude. Not to be bitchy. Not to be ungrateful at all. It's just how it is and I don't know if you'd quite get it if you weren't in a terminally ill position, or even sometimes chronically position.

What I'm really thinking: the terminally ill patient

"Since I was diagnosed as terminally ill this summer, friends have rapidly disappeared. I can count my real friends on the two fingers that I'd like to raise to the rest of them. It's hard being friends with someone who's dying, I know – I've been in that role myself – but it's harder being the person saddened by the lame excuses for not making contact.

These all begin with, "I'm sorry I haven't been in touch, but…" A text from a "friend" of many years told me she's been "busy, busy, busy"; another has been so tired after gardening she hasn't been able to email. Another doesn't know what to say. Well, how about talking about work, kids, partners, politics, weather, what's on TV – like we used to?

Then there's, "But I pray for you every day." Every day? Does your compassionate God not tell you that he's heard your prayers before, to stop repeating yourself, get up off your knees, pick up the phone and talk to me instead?

I listen to the excuses and say I understand, but I don't. The two people who have been friends don't do anything different. They just carry on visiting and having a laugh; they keep the emails coming and share their news with me, even when I'm not well enough to reply. Do those who've made the excuses believe what they say, or will they, for my funeral, suddenly find the time to attend, weep and say how much they miss me?"

Penny for my thoughts...

We're on day number 37 of being in the hospital... the ICU of all places. It's getting pretty boring, but I'm getting pretty used to it as well. It's my new normal and I'm having to accept that I can't do a thing about it. I have to deal with it, live in the moment - and figure out how to get Spencer better while keeping myself entertained.

Not the easiest task - but I think I've been handeling it pretty well the last few days. I have my mom to thank for a lot of that. She was able to come to Utah on Sunday to help me out with some things and be there for Spencer as well. It's been such a blessing to have her here! You never know how much you miss your momma until you haven't seen her in several months! Spencer's been doing well while she's been here, but she keeps me company and puts several smiles on his face. While I am working today she told me that she would stay home and do the dishes and cook dinner =) A home cooked meal - something I haven't had in quite awhile!! (minus the one meal I had with Christine and Adam a while back which tasted amazing!)

I am having a pretty positive outlook on things. I can see Spencer starting to get better. We have this nasty curse of the threes, though. It seems like he has 3 good days and then we have a really bad day that sets him back quite a bit. (frustrating!). I am hoping to send this curse to the curb!!! Getting that breathing tube out of his mouth has made him a lot more comfortable. It's not as 'scary' seeing him now as it was. Honestly, he's looking like Spencer. Just a very weak and tired Spencer. But he is able to communicate SO much better with us. You can hear some of the sounds he makes, kind of it's hard to explain, and we can read his lips a lot better. I know that he's still in pain for the trach and that should start to go away... but I know he's a lot happier with it in.

I have been a little bummed out that he's had to take pain meds... It makes him so sleepy and after he takes them he's usually out for the rest of the day/night. I'm not going to tell him not to though! I think he's been a huge trooper through this whole ordeal. He usually goes until about 3 or 4 without pain meds and I don't know that I would be able to last that long!!! He amazes me.

I'm sooo ready to move out of the ICU and down to the step-down unit.... but then again I'm not. I've gotten really familiar with the staff in the MICU and I now know what nurses I like/don't like.. What doctors to talk to.. What staff I can bend some rules with.. etc. It's going to be a whole new discovery in the IMCU (step down unit). Leaves my mind to wonder a lot.

Will they be as strict with the precaution rules?? (I'm SURE they will!)
Will I be able to stay there through shift change? (NO idea)

Is there chances that I can spend the night there?

Will the staff be good - what about the docs?

Will the rooms be as big as the new MICU?

Will it have a good view? (picky I know.. but when you're in there ALL DAY LONG every single day... you need an outside view!!!!!!!)

Just questions like those run through my mind - something that will take a couple weeks of figuring out on the new floor. You also have to explain everything over again to the new unit... what happened to bring Spencer into the hospital... what took place in ICU.. how long we've been in there.. etc etc. Gets kind of annoying. Just look at his chart? lol :-P

But getting out of ICU is a step FORWARD... a big step forward. He will still probably be trached but at least we're getting out of there! Gotta keep our hopes as high as we can!!!

Thank you everyone for the thoughts, prayers, support, and cards. We really appreciate them and Hope that they continue to keep arriving in the mail throughout our stay in the hospital. They are needed to keep us sane! I've decorated Spencer's wall with the cards and it looks SO much better! Keep them coming!!!!!!!! =)

CF desperately needs to stand for CURE FOUND!

Wow. In the way my friend, Malina, said it - This year has just been brutal for the CF community here at our clinic. We've lost one too many CFers this year, two this month. They hit way to close together and it's really hard to handle it when you're going through the reality that it could be your husband next.

These lives lost are hitting WAY to close to home. I'm hating being in the ICU because i've been there when two of them died. I've seen their families, hurt, scared, sad, angry, upset. It's hard to see because I know that it will be me one day. I hope not anytime soon - but one day it will be me.

I just keep telling myself that WE ARE NOT THE NEXT TO GO! I'm holding out so much hope with this trach that's been put in. I hope that he can improve and get his strength back up. Just have to pray for no more infections, etc.

Breathe Easy, friends. Though I may not have known many of you very well - I know that we still lost 4 precious, precious lives this year.... and just one life lost is too many. We need a CURE to be found so soon. I can't imagine hearing that another one has been taken because of CF... I just can't hear it anymore...

I wanted to share a couple quotes and/or verses that I've been reading that have helped me get through these last 5 weeks (Wow! It's been 5 weeks?! Crazy!!)

"Stay positive and keep fighting. Never give up. The stronger you fight, the stronger mentally you are going to be in the end." -Astra Waller (fellow CFer from clinic who is now breathing easy)

- Everyday may not be good.... but there is something good in every day... (not sure who this was said from, but I love it)

- "A hero is not a person who puts on a cape flying around and saving people. A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles." (not sure who said this either - but Spencer is my HERO!)

There are more - I'll share at a later date. But I read these every day and they make me think of the good; not the bad, and at least crack a smile once no matter how rough the day is <3 =)

Let go, Let God... How?

[Sidenote: I have no idea why some of this blog post is highlighted in white... I can't figure out how to fix it.... ]

I've been struggling lately with this phrase... "Just let go, and let God." I've been told this many times. That this is what I should be doing... to let God in control. But I can't... How do you just hand it over to God?

Everyone makes it sound sooo dang easy. But my questions is, how is that even possible when you know darned good and well his plan could very well be to take the one you love the most??? Now I know this may not be true - but I'm posting how I feel. I feel like letting God take control is me just throwing in the towel and giving up. I almost feel like I wouldn't be fighting to keep Spencer alive anymore, and that pulls at my heart in all the wrong ways. I know Gods will will be done no matter how hard I fight, how hard the doctors fight, even how hard Spencer fights; but I don't want to feel like I'm letting go of the fight myself. Does that make sense?

There is a VERY real possibility that Spencer's time on this Earth is coming to an end quicker than anyone imagined. That our Heavenly Fathers plan is for Spencer to return home. I can't even come to terms with it myself and I have been fighting my hardest for my husband to survive every single day. I pray, I ask others to pray, we get him blessings, I read helpful scriptures, I am thinking about fasting with others.... but the one think I just CAN'T get myself to do is to hand it over to the Lord.

I don't want to lose Spence! I don't want his time to be done... We just started our life together and I can't imagine what it would be like with out him. I am tearing up just writing that. How can I possibly let God in control when I know that he can take him??? If I let him have control - then what happens? Will he be gone within a matter of a few days if that is His will?? I can never know if Spencer's time is through... but I don't want him to go.

I chose this life... I chose what I am being given. I chose to be married and to go through all of this - but I can't accept what is happening. I almost feel weak because I can't let go... because I can't hand it over. I'm not strong enough to do that. Maybe that's the wrong mind set to have, of course it probably is... but I can't help how I feel, you know?

I've always thought that one of the HARDEST things that people do is to tell a loved one that it is OKAY to stop fighting. It is okay to just stop holding on. That if they feel the need to go, then it's okay. I feel like this is one of those situations. Is it? I feel like if I give it up to God I am telling my husband that it's okay to stop fighting. It's okay to just let go... but in my mind, and with how I feel IT'S JUST NOT OKAY TO STOP FIGHTING!!!!!!! How could I possibly tell the love of my life that I am okay without him. because I AM NOT. I need him. Gosh I need him. What if I would tell him it's okay to go and at that moment he's feeling extremely vulnerable and weak and he stops holding on... when only if I would have waited a day later, hour later, or just a moment later he would have the strength to keep going? What if he still had so much more life left to live? What if even he got better was able to come home with me. It's something you'll never, ever know - but I don't know if I could live with myself if I told him that it's okay and then I lost him shortly after....

In this case, this position I just feel so week. So vulnerable myself. That phrase is something I think about so often. Because I don't know what to think about it.

An amazing guy, Josh, told me today, "You are doing exactly what you need to do exactly when you need to do it. You are being the person Spencer needs you to be....."

I needed to hear that at the exact moment it was written; shortly after I posted a status similar to this blog post... I think I might just listen to his words. I am doing what I need to be doing, when I need to do it. I can't rush myself to do something I am not ready to do and THAT. IS. OKAY. I shouldn't feel weak or ashamed that I can't turn our situation over to our Heavenly Father. It will happen on it's own time, just like everything else. I need to let myself feel how I'm feeling when I'm feeling it. I am no less of a person because I can't do things that other people may think I need to do. My Faith is not necessarily lacking because I can't hand it over. What I am going through is completely normal and I need to remember that....

THANK YOU!!!!!

I want to take a moment to express my sincere gratitude for all of your thoughts, prayers, support, care packages, cards, and help. Honestly, there is no way to explain how thankful I am of the support (in any way) that Spencer and I have been getting. I know that I am speaking for him as well. When I tell him he's gotten another card or package the look on his face just says it all. I want to start recording his reaction!!! I can't wait until he's alert and not in pain so that I can read everything that's been written this past week. We have some catching up to do - but we REALLY enjoy it!!

We have gotten several cards in the mail and they truly brighten our day! we love daily mail!!!! Keeps us hopeful and helps us just hold on a little bit longer. Even if it's been a harder day we get smiles on our faces. It's amazing what something as simple as a card can do! I can't even begin to name off everyone who has sent something, but I WANT to one day when I have all the cards with me because I can't possibly write thank you cards to every one every time someone sends us a card!

I am keeping them all together and I found out that we can decorate the room a little bit as long as it stays on the walls out of the way! So I have a little craft project I'm going to attempt so that we can hang all the cards up around the room =)

We've received three care packages and they've been great!!! Thank you SO much to Emily, Patty, and Julia!!!!!!!! =) You received the BIGGEST smile from me when they were opened!!!!

We feel the love and prayers. I never got it when people would say that they could feel prayers... but I get it now. You can just feel the overwhelming love and support overflowing and it's such an amazing feeing.

Unfortunately this battle isn't near over.... we have quite a bit longer to go here in the hospital, and then not to mention everything following the hospital stay! It's day number 30 in the ICU and vented. Whew it's been a LONG 30 days - can't imagine what is to come!

Again - THANK YOU from the very, very bottom of my heart. (and Spencer's) Please continue to pray and shower us with support. The longer we're in here, the harder it gets to remain sane... O.o

THANK YOU!

New drug for CF - mixed feelings.

This gives me so much hope: http://www.cff.org/aboutCFFoundation/NewsEvents/Vertex-Submits-VX-770-Application-to-FDA.cfm

This is actually a drug that treats the CAUSE of Cystic Fibrosis - not just the symptoms like other drugs currently available. They have made such huge strides with the treatment of CF. Spencer doesn't have this mutation, to my knowledge, but they are working on a drug combination for the Delta mutation - in which he has. I have so many friends with CF and I am excited that they might get a new chance at life, a longer and healthier life because of this medication.

But even though this is very exciting news, part of me is really sad - just sad to know that it is probably a discovery too late for my husband. I sooo wish that he could get better and could IMPROVE instead of just getting better enough for a transplant. Every time I think of this my world shatters.... each and every time. I badly want him to be able to take this medication and live a better life. Just thinking about the effect it could have on the way we live our lifes - he could improve, be able to do things he's never been able to do before... I just wish he had that chance.

Of course new lungs and a new liver give him that chance - but we aren't even close to being able to get him new organs. And NOTHING is saying that he will even get approved to be listed. I want to believe from the bottom of my heart that a transplant is going to happen - but I am getting soooo very discouraged. All the What-ifs cross my mind constantly.

I'm having a hard time dealing. I think the thought of losing him is really just a numbing thought anymore. I used to cry and get extremely upset every time the thought crossed my mind - but now... It's numb. I don't feel anything. OF COURSE there are times when my world comes crashing down and it hits me like a brick wall... but with my every day thoughts that he might not pull out.. I don't feel.

I don't want to believe it.. I don't want to accept it. I want to think that this hospitalization is just like the last. That he's super sick now, but he's some kind of super man and will pull through. But I don't have that guarantee. this hospitalization ISN'T AT ALL like any of the others. His lungs were not failing. He would improve, come home, improve a little more, and get sick again - that was our life. At first it was hard; but then I learned to accept it. But now - I have to accept a new reality. A harsh one. That he might not get to come home =( I don't even know how to handle it. Taking it day by day. It's all I can do. Hanging in there. I have to - there is no other choice.

What really gets me is how much better he was getting. How much he was improving. We started Cayston and he'd been trying to be a lot more active. He was doing his treatments just like he was supposed to.... 2-4 times a day... And most every single day he would do it 4 times. When he wasn't feeling well - he would just sit there on his vest for hours at a time. He said it took away some of the chest pain and helped him breathe better. He was/is a trooper. But it just proves that this disease is SCARY. terrifing. You NEVER know what is going to happen. his PFTs were the highest they've been in a year... 30%.... kind of crazy that FEV1 of 30% is really good for him.. but he was IMPROVING. slowly - but surely. WE COULD SEE HOPE. We were FINALLY starting to see the light at the end of the tunnel. And then one morning he wakes up, in critical condition... How do you deal with that? How do you deal?

My advice for anyone is turn your life around while you still have the chance! Spencer started to -and I wouldn't necessarly said that it was too late - because it is NEVER too late to turn things around.... I just wish he would have done it sooner for a possible better outcome. Don't let that happen to you. Every day is a new day, live it up.... Enjoy and love...

Difficult morning... =/

I'm terrified. Something is just not right. I can feel it through my entire body. My emotions cannot get under control. Something is going very wrong with Spencer and I'm very anxious to get the ABG And chest xray back.... The doctor is getting ready to come in and my stomach is full of butterflies. Sometimes it helps to hear the doctor explain everything - sometimes it hurts to hear the words he says. Either way, it's important for me to speak to him.

I'm just so scared. Something in me is just saying to be with Spencer every second today. To love him. To hold is hand. Tell him to hang in there - keep fighting and I will be with him at every moment. I'm sure he's getting so tired of hearing "keep fighting" i've only said it once in the past week. It's kind of like the phrase "be strong" for me... You know people say it with only the best intentions, but it's one of those things you just hate to hear sometimes...

I don't know what to do with myself. I'm just so upset today. I don't want to talk to anyone. I don't wan to see anyone, except part of me says that I need to be around someone.... have someone here to help hold me up. It's mixed feelings, honestly. When people are around I don't at all want them to be, but when they are gone I wish they would come back.

Today just isn't a good day. Not good at all. I'm tired of riding on this roller coaster. I just knew something was going to go wrong because we've had so many good days. This is how it seems to happen a lot.. and why it's really hard for me to get optimistic and hopeful. Because the next day seems to fall apart. I desperately need things to get better. I don't know I'm doing this, honestly. I don't know how I'm holding up.... all I know is that I'm doing it - and barely getting by each day.... It's what I have to do. I'm not going anywhere. And I pray Spencer won't either any time soon. <3

Anxious

I've been on edge all day. Not really cranky... Just uneasy. (although certain comments from certain therapists have made me cranky!) Feeling like something is wrong. Spencer's been less alert today than he has been in the last couple of days. He's slept literally all day long.. I just get so nervous his CO2 levels are coming up when he sleeps all day. Sure, it certainly could be just an off day and he's tired - especially since he walked a good amount this morning. But my mind always goes to something such as his blood gases.

I'm terrified he's going to be able to come off the ventilator. I'm afraid he's just going to want to give up if he can't stay off of it this next time. If he can't come off of it there is a chance they will want to trach him... I asked Spencer if he was okay with that - he didn't give me an answer. I told him I didn't need an answer right now, just to think about it. But the fact that he didn't want to say that it was okay scares me. I know he's sick of everything. I would be too. Heck - I AM sick and tired of everything. But I'm not the one fighting. I'm the support, the caretaker. And I am not giving up. It's SPENCER that has to want to keep up the fight. And he's just been fighting for so long. I don't want him to get to the point where he's so frustrated and depressed he doesn't want it to continue. Thinking of that tares me apart. But it's a reality. He has a major history of depression..... I try not to think about it... but it's always in the back of my mind.

I've been trying to be REALLY positive around him. I try to keep his mind busy. Things as fun as they can be. SO optimistic about everything when i'm with him. I just hope it's helping. I don't want him to see be break down - that's when his mind goes south into the depressing thoughts and I'm trying to avoid that as much as I can.

Today has been kind of hard. I blogged before or updated my status to... I don't remember... but I mentioned how I really didn't want to get my hopes up because of a few good days; because it's just our luck that he has a bad day after 2 or 3 good ones. And when I expect things to be better the next day, and they aren't what I expect - I have a rough day.

I am happy that he is down to 5/5 with his vent settings. That's like one of the last steps before he gets off =) Which is great!!!! But until that ABG is done my stomach is still going to sink and heart is still going to race that he isn't tolerating these settings well.

I wanted to play a bunch of card games today and maybe do a puzzle. But he's been asleep and just can't keep his eyes open. So it's just another boring day for me. Yet I can't quite tare myself away from the hospital because I'm super anxious. Even going to smiths to get gas and a puzzle made my anxiety really high being away!!! I don't want something to go wrong while I'm not here at the hospital you know. I know the chances that that will happen are low - but still. My anxiety gets high!!!!

Just hope and pray for a better tomorrow... that's all I can do to get me through it!!!

I am so happy that Spencer is finally starting to get better! It's hard for me to get excited about it and get my hopes up, but this time I just can't help it. I know that since there have been about 3 good days we could always have a bad day creep up - but for now I'm just happy. I don't think I've cried a tear for the last 3 days and that makes me a happy camper =) I've been a little bummed at times or frustrated, but never upset!

Today was a great day and his vent settings have been turned down even more. If things continue to go the way they have been we can look at him getting back off the ventilator in the next day or two =) It gives me so much hope to think about. His CO2 levels have been a little high and it's been concerning me a little bit. This is why he's had to go back on the vent so many times after being extubated or self extubating. I'm going to be on pins and needles, almost just WAITING for something to go wrong... I know that's not the best attitude to have.. so I am just trying to prepare myself that something COULD go wrong, but I'm going to try my best to just enjoy every SECOND that he is off the ventilator. Hug him, kiss him, talk with him, joke around with him, play card games with him. I just need to live in the moment... And that's sometimes really hard when you know he is dying.

Something that I keep having to shove out of my mind is death. Lately, without even knowing what I would be thinking about, I've noticed myself thinking about Spencer's funeral. Such as what songs we would play, who would speak... etc. I DON'T WANT TO THINK ABOUT THAT. That's the last thing that I want on my mind. But for some reason it keeps creeping up. Every time I realize what I am thinking I shove it out of my mind and think of something else. I hate that it pops up... I don't want to think about my husbands death =( I guess it's just so much of a reality now days that it naturally comes up? Idk... i just don't like it...

As I said... it's hard to live in the moment. To not think about what might happen... what might go wrong... how much longer he has left... if he'll get to come back home... If he'll get a transplant... and the list goes on and on. But I'm certainly trying my best to take in every moment... every little second and enjoy it for MORE than it's worth. I want to cherish them forever.

Last night we watched a movie together. Rio. It was super cute. I moved the chair over right next to spencer, got myself as comfortable as I could with those dang gowns and gloves and just held his hand the whole. entire. time. It was wonderful. I kept smiling, just thinking about how happy I was that he was able to be watching it with me... that he was able to hold my hand. It's little moments like that that are just THE BEST. =)

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