Day 16 - absolutely exhausted

Day 16 - Your dream house

I know it's kind of weird that a log cabin would be my dream house because I hate snow so much - but I have ALWAYS loved the look of them... and the feel inside of a cabin is the best! You can have a nice cozy warm fireplace with hot chocolate. A home shielding you from the weather. The picture above is pretty elaborate... and my dream cabin would be smaller than that - But I love that general idea :) Fun to dream, right?!

This week has been CRAZY. Doesn't help that everything had to be put off last minute - but I felt like I could never catch a break! I had (have) 2 papers due this week, Spencer's clinic appointment, babysitting, lesson.... I should be finishing up my second paper right now, but I'm so mentally exhausted I can't think straight!

I stayed up until 4:30 last night trying to get my research paper done - I'm actually pretty proud of it for it being the very first one i've ever written!! (well with statistics.. etc). But I only got about 5 hours of sleep and then I had to get up for class and babysit a 2 and 4 y/o for 7 hours!! I didn't feel all that tired until I got home and actually relaxed then it hit!

I don't know how I've gotten through this week, honestly. And here I am, as tired as can be, and I'm thinking about attending the last crimson nights of the year tomorrow... Big event at the U... from 9 Pm to 2 AM... Am I crazzzy?

Anyway.... I doubt this post makes much sense. Just wanted to do Day 16 and then blab a little I suppose!!!

Goooood night!

Day 15 / Spencer's Clinic

(Just so you know.... It's a long blog!!! Talking about Spencer's recent clinic appointment and what was said with his health status after this Day 15!!!!! very long!)

Day 15 - A bible Verse

"... I taught you to remember the words of Jesus. He said 'It is more blessed to give than to receive!'" Acts 20:35

How true this verse is! I tend to give WAY more than I receive and it feels so GOOD. I love helping others and doing service. Puts a smile on my face and in my heart. Good things will come to those who give and I really do believe that. Something I've wanted to get into the habit of doing is waking up in the morning and asking myself "Who can I help today." I've noticed that when my morning starts off with helping others or even just taking a moment to say hello and ask a person how they are doing, my day goes SO much better!! Even if it is the simplest thing as realizing a man cannot figure out the breaks to the wheel chair and quickly doing it for him even though you are in a rush (This was a couple weeks ago that I did this!).... It makes me feel good =) I have also been on the receiving end of giving and service and so I know how amazing it feels to know that others are willing to take a moment and help you out. Such an important thing!!!

Now on to yesterdays CF clinic appt with Spencer. Oh what a morning it was!!!!!!!! First stop was the PFT lab - yikes. things just didn't go as we expected. Spence was consistent with an FEV1 of only 25%. We both at least thought that he would maintain his FEV1 of 31%. So that was a shocker and an immediate disappointment and fear. So while trying to hold back the tears and panic we waited to see the doctor. Got back there and after a lengthy vent session of how disappointed and upset we were with the last hospitalization and doctors - we got to business! This appointment went very well. So many good things were said and we learned a lot.... So here we gooooo!

Since Spencer has been compliant with all of his treatments and medications - they thought it might be a really good time to try a new-ish antibiotic, cayston . They are thinking that Spencer might be one that needs to be on some kind of antibiotic all the time. And so when he is off of Tobi for 28 days, he would take Cayston. This has the potential to help him cough up a lot of mucus that he had no idea that was in there thus improving his lung functions and KEEPING HIM OUT OF THE HOSPITAL LONGER!!!!!! They said that it kills off the bacteria in a different way than Tobi and other antibiotics do, so it could (but also could not) really help! He would have to take it 3 times a day (which is just fine, he does 3 treatments anyway) and has to be verrrry good about cleaning the equipment right after every single dose of the med. It only takes about 2 minutes so thats a huge plus!!!!! We're very excited about it! Spencer and I talked it over and he thinks it's something that he REALLY wants to try - anything to keep him out of the hospital LONGER!

Downside: It takes awhile to get. About a month, give or take. Insurance approval, shipping it here, lots of paperwork.. etc. But My thoughts are that if he can go out of the hospital right before the wedding and start Cayston, he will have a good chance to be feeling GOOD for our wedding in June!!!!! :)

We spoke with the pharmacist and he had some excellent news for us - Spencer is, again, sensitive to IV Meropenem!!!! =D This is very good. His germs were resistant to Mero for about a year and we were forced to switch IV antibiotics in the hospital. He was on ceftazidime (?) for awhile and it was doing the job, but the Mero has always worked best for Spencer. We were told that the Mero is actually MORE sensitive than the Ceftaz! So next hospitalization they are going to put him back on Meropenem and in all hopes he will respond very well to it! So currently he is NOT RESISTANT to any antibiotics!!! =D can you say YAY!!!!!!!!!

While speaking to his doctor, we expressed our concern about Spencer's low PFTs and how when we were last in the hospital some other docs were telling us that his may be his new baseline (FEV1 at 31%). Carveth was VERY encouraging to us and said that she will not accept a new baseline. She said there is always room for improvement and she doesn't think that we should be accepting a new baseline right now!!! How AWESOME is that?! Yes, she is concerned with his PFTs, oxygen needs, and shortness of breath - but she thinks that since he is able to exercise at least a little bit, that he's being compliant with everything, and that he is doing very good chest PT that those numbers could come up! Not to mention if he starts Cayston that could mean even more room for improvement. So as long as Spence keeps doing what he's doing - she believes he can AT LEAST maintain these numbers, if not make them better.

She is also concerned about his absorption. She doesn't think that he's absorbing his medication well enough and so it's not working to the full extent. If you know Spencer's case, you know that he has multiple organ involvement which makes everything really complicated. He has both kidney and liver problems and so when one acts up - everything acts up. She thinks that his liver might not be doing all that great and so she told us to start MCT Oil which will help absorption of the meds and taking them with meals so that he's taking enzymes with them - she said the enzymes will help maximize absorption.

We found out that Spence hasn't seen his liver doctor in over THREE years!!! Whoops!!!!! That's not a good thing - so she thought it was priority that he get in to see him asap. Soonest appt was in August - figures. So she told him next time he was admitted that they would make sure he gets seen in the hospital :)

Alllsoooo Spencer and I brought up transplant. Yikes. scary topic - but something that really needed to be talked about. She told him that as far as compliance with things he has proved himself (I am SO proud of you Spencer!!!) The only thing he really needs to work on is going to rehab while in the hospital. He's been kind of spotty with making it to rehab 100% while he's admitted, but we're going to work on that and next admission he's not going to miss even ONCE! (right Spence!?). She said that of course since he has bad kidneys and liver that a lung tx would be a lot more complicated because there is a big chance that he would need a double lung/ liver transplant. Uhmmm. holy crap. We knew this - but that's just crazzzzy. 3 organs..... They've had someone in the clinic do this before and things went well. That's really encouraging that maybe his muli organ involvement won't hinder his chances for a transplant as much as I thought it would. Only downside - we would have to relocate to Pittsburgh, PA for it all. This is all a lot to take in, but if he qualifies and everything - I guess this is what We'll do!!!!!

She said that of course tx is a LAST RESORT option to everything and the reason they are very careful with when they do this is because there becomes a time that by getting a transplant it will either take years off of your life (because you could have had more years with your current lungs) or it can add years on to your life (because you will now live longer with new lungs than you would have if you kept your old). It's a fine line and they want to add AS MANY years to a persons life as possible. the doc wasn't sure if he is at this point yet - but we will be finding out soon!!!!

She said that she is going to put all of his variables and numbers into the computer and figure out his "transplant score". He's had 16 admissions in the last year... and his PFTs are consistently dropping. (though nothing is to say they can't come back up!!!!). She wants us to come back on Monday so he can blow PFTs again and hopefully his O2 need will be back down. She also said that we will discuss these numbers for transplant on Monday. Ahhhh NERVOUS! We will find out Monday how close, or far away, Spencer is for being considered for a TRANSPLANT!!!! It is all so exciting and wayyyy crazy scary. The prospect that he could get NEW lungs and be able to BREATHE is just amazing and beyond words. But it's also such a SCARY process to go through. Please pray for the best, whatever it may be.

Spencer also got a call from the clinic today... and well.... instead of meeting with just the liver doc... they are going to have him go to the LIVER TRANSPLANT CLINIC!!! holy crap! I don't know what all of this means - but they had a cancellation on Monday and I guess carveth really wanted him to see the docs - and they made it for the tx clinic.. We're confused.. I hope this is all just to get his status on his liver and not at all an indication that we have to think about this much sooner. You know what I mean?

So Monday is going to be a CRAZY crazy day.

PFTs again

clinic with CF doc to discuss transplant options.....

liver transplant clinic for whatever reason.....

I am going to be a mess - I am so nervous!!!!!!! I can't imagine what is going through Spencer's mind right now... He must be going insane thinking about all of this!!!

I will of course update - Please pray and think and hope and wish for the best best best outcome that there is in our situation. :) We're excited, but nervous, and scared, and AHHHHHHH! This is all REAL and yes we are talking about some HUGE things, now.. it's not a dream!!!! -sigh- only praying for the BEST!

-Nikki

Day 14

Day 14 says to post a picture that I love.... I love a TON of pics - but the one that is currently my desktop background has to be one of my favorites. My sister took this picture (with my suggestion!!) last summer while we were at the lake. I was just laying on the floaty and this dragonfly kept landing on my toe - right when Shayna got the camera out it flew away (of course) so we patiently waited and right as we were getting ready to call it quits it came back! She took several pics and we got this shot!!! PERFECT!

Prayers for Tomorrow!

Asking for many good thoughts and prayers to be sent Spencer and I's way as we go into tomorrow. Spence sees his CF doctor and blows PFTs. He's been out of the hospital almost 2 weeks and we're doing a follow up appointment. If you've been keeping up through facebook you'll know that Spencer's been pretty sick and has had a REALLY hard start to the year.

Tomorrow we are meeting with the doc to discuss his current health state. We want to know where he is at and what options we have. We would like to know what to expect, present and future. It's a huge appointment - I'm starting to get nervous.

For specific prayers and/or good thoughts:

* Spencer's PFTs have AT LEAST sustained and not dropped

* For the CF doctor to deliver positive and encouraging news

* That she will be given strength to say the right things and make the right decisions and calls with his health.

* That he can STAY OUT OF THE HOSPITAL tomorrow =)

Thanks you in advance!!!

-Nikki

New hobby?

So this is what I have been doing all evening! I baked the cupcakes around 5:00... I was really nervous about the frosting. The last time i tried to make a butter cream frosting it came out pretty gritty and didn't taste the best; though we still ate it! But this time I found a different recipe, creamed the butter and crisco a lot better, and made sure I sifted the powered sugar a couple times.... whatever was different about this time - it worked because the butter cream frosting turned out fantastic!!! I used green, pink, and blue dye (I LOVE this dye, it's neon colors - so they are very bright with just a little dye!) They turned out really well - I was actually planning on putting candy eggs where the stems are - but the eggs turned out to be too big for the cupcakes... And I was running out of frosting to make eggs - so the stems are a little awkward - but honestly? I'm proud of them! This is my FIRST time decorating with frosting and i LOVED it. It was so much fun and really relaxing for me.

I don't consider myself to be very creative... and although I love crafts and trying to be creative, I don't ever seem to do a good job or I lose interest really fast. So coming up with this design for the cupcakes (with no help of the internet, books, or instructions!!) was a huge accomplishment for me!!! I think this is a great hobby. I'm looking forward to learning more tricks and designs that I can do - Next I think I really want to try a cake :) too bad this hobby might make me fat.. haha.. So I'm telling myself I can only bake when we are expecting company or plan to feed people :-P If we have extra - GREAT - gives Spencer a few extra calories - and goodness knows that butter cream has a butt load of calories!!!

Today was a pretty good day... I planned on doing homework but... well... I took the day for myself and I REALLY enjoyed it. Spencer and I worked out early this afternoon and it went so well! I pushed myself cycling - I didn't go as long as I wanted to because there was SO much to be done today. I am VERY proud of Spence for doing what he did :) YAY!

After exercising I did some shopping, came home and cleaned and did some dishes with Spence... then we had some guests over for dinner - Spencer's Uncle Matt and Aunt Suzy! They brought over some FANTASTIC sloppy joes and macaroni salad. We had a nice conversation... just trying to play catch up with each others lives. It's so very nice to have a place of our own where we can entertain guests when we want :) And keep people out if they are sick so that Spencer doesn't catch something. Thanks Suzy and Matt for coming over! We REALLY enjoyed your company!!!! =)

I'm glad today went so well - no tears, no frustration, so upset moments - It was just perfect. It's been a rough week - and when I mean rough, i mean HARD! VERY emotional and upsetting and frustrating with every turn... But I'm trying to put all of it aside, focus on my school work - and just not let things worry me... at least until Monday.

Monday Spence has an appt with his CF doctor and blows PFTs. I'm very nervous. She is going to fill us in on his condition and give us updates to where she feels like Spencer is. Spence says he wants to bring up transplant - maybe not for right now - but he wants to know more about it.. It's crazy scary - and I'm not even ready to think about being at the point for a transplant - but it's life.. it's CF.. and it's progression... and unfortunatly it's something we're going to have to face be it now, or 10 years from now.. We have to know whats involved with his future health, and somewhat what to expect. I just hope we get encouraging news. Please pray for this as both Spencer and I are nervous.

Alright, bedtime for this girl - Church tomorrow - excited to start going back!!

-Nikki

It is what it is....

I just want to get something off of my chest. here's hoping that writing about it allows me to sleep for the night.

I'm worried. I'm scared. I'm constantly thinking about the time I have left with Spencer, more so recently. This is something that I try my hardest to put to the back of my mind. I don't spend every day thinking about his CF being terminal. I don't live my life with the reality that Spence and I may be facing new facts soon that his CF is, in fact, progressing to a very scary stage.

But within these last two months, I've had to face his CF head on and so many questions and concerns, thoughts and worries have come to my mind with the pattern that he has been stuck in. Just 4 short days ago we were told that an FEV1 of only 31% could very well be his new baseline, instead of the 35-37% FEV1 that he was blowing... occasionally reaching in the lower to mid 40's. I tell you what, that is a scary, scary number. I know that numbers do not at all mean everything. He says he doesn't feel like he's at 31% - and I'm overly grateful for that. But I know friends who are 31% and a little above that are thinking about and even talking to their doctors about a transplant..... Is this our new reality?

I can't help but wonder right now how much time Spencer and I have left. I feel like we've been living in some kind of denial... denial that he can get his numbers up, that he can get off oxygen... Maybe it is time that we face the facts that this disease is terminal, and that his cystic fibrosis is progressing. Is it time that we listen to the doctors and get it in our heads that there is seriously a chance that this pattern is what we're going to be experiencing for the rest of our lives? The pattern of entering the ER at LEAST once a month (within one month we entered 4 times) and have a 2 week clean out once a month, or sooner, like clock work? I don't WANT this to be reality! I'm not ready to accept it.

I know that the doctors can never, ever, be 100% sure about his prognosis. I have read so many blogs where people have been told that "this is it" but yet they have beaten all odds and turned around significantly. I pray to God and hope with all my heart that this is Spencer's case. That we've just had a very, VERY rough 2 months and things will start turning around... I have been trying my best to accept and understand that with this recent embolization his lung functions may have impermanently dropped a little. It's a 'side effect' of what could happen. That might explain his recent PFT numbers. scary, unfair... but life and we have to face it, and live it....

Sometimes I feel like the odds have really been against Spencer. He's been bleeding SO much recently and it's scary. (I know I have used the word 'scary' a lot in this post... but this is all raw, fresh... and it terrifies me of the future... near or far.) He was embolized... and just a few days later he started bleeding again. It seems like every time he starts up on his pulmozyme (a very important medication for him) he starts bleeding... Yikes. What does he do if he's unable to take the med. He gets SOO junked up without it and it's very, very hard for him to cough stuff up. If the mucus stays in - infection sets in and we're back in a cycle...

His life depends right now on compliance, exercise, and support and love from his friends and family. I cannot stress enough how important these things are.

First comes compliance... if he misses a treatment he misses a critical chance of getting the fresh mucus up and working to get the old stuff out. As I said before, if the mucus stays in there, infection sets in. Not only are his inhalers so, so important, but his oral meds are too. as well as his VEST, PEP, and huff coughing. Thats the first step and the basis of everything.... if he can't do these things, then it's a struggle to do the rest and have it effectively work.

Second.. but pretty much tied, if not exceeding the first is exercise... I hope that he can get in the swing of exercising with me with every ounce of energy that he has so that he can strengthen his heart and lungs, and get the junk out. His LIFE depends on working out. I have seen the improvement that a very hard working, successful rehab session over a few days can give him... It's raised his FEV1 significantly. I want to see that every, every day. Just think about the improvement that might be able to be made!!! It's so, so crucial.

Third... nearly equally important, is support. It's so hard for him to keep his spirits up to fight this fight without support and love from friends and family. He needs the encouragement every single day to KEEP ON GOING. to NOT GIVE UP. And he needs it more than ever when he is in the hospital. It doesn't matter that he is an adult, that he has me, that he is being taken care of by nurses.... it doesn't matter how young, old, sick, or healthy he is.. he is ALWAYS going to need that support.. And honestly - it's really been lacking from people. He's been feeling really down and that he can't please anyone. People - please understand that you need to CHERISH every SINGLE moment you get with Spencer. Understand that he NEEDS you. It may not seems like it will change much in the way of his health - but it DOES. I promise. When he gets phone calls and visitors... no matter if he's in the hospital or at home - he lights up. His day just gets 100% better. He focuses on his treatments so much better - because he realizes and knows that he has something worth working towards and living for.

I'm not done fighting for Spencer. I won't ever give up. I'm doing my best right now to focus on living life with him and cherishing every single day, second, moment that I get with him because I am starting to honestly realize how precious his life is... every moment counts... I find myself REALLY appreciating and loving specific moments - I don't want to lose them... I don't want to forget them. I want to remember every single one..

We see his doctor in about a week to hear the latest. It's an appointment to specifically discuss his prognosis, what to expect; present and future, if we're really looking at this being his new baseline... and what exactly, if she knows, has been going on and why he's been needing so frequent hospitalizations.

Wow.. I've really been going on, and on... But I just needed to express my feelings. Honestly - this blog doesn't even begin to cover my true feelings... I just can't express the multitude of emotions I've been feeling with every second of every day... I can only hope that things look up instead of going back into the whirlwind that we've been calling our life...............

Day 13

Day 13 - Goals

1. Have this semester start to raise my GPA!

2. Finish school within the next two years

3. Exercise every day, no excuses

4. Not missing anymore classes this semester

5. Taking things one day at a time and trying to not get overwhelmed with everything I have to get done.

These are just a few goals that I would really like to accomplish! I'm trying my best - but it's never easy.

On another note - I'm a bit worried about my health. I've been having some stomach problems for a couple weeks now, and I've been trying to ignore it. but it seems like every time I eat these last couple of days I've been have more stomach pain then normal. My energy level has been a little bit lower recently, but I've just been trying to push through it and not let it get me down.

I just have this feeling that my Crohn's might be starting to act up again - and it worries me. I've been trying to keep up with Spencer and his health, trying to keep up with school and all of my papers and exams... and now I'm having to try to keep up with my own health and trying to avoid getting sick - even though there isn't much I can do - Crohn's has a mind of its self! I really hope that it's a minor set back and doesn't continue to act up - a flare is the LAST thing I need right now. hopefully I can get on medicaide soon so that I can get some blood work done to check up on my disease and possibly find another GI to find a med that I can get on. Guess we'll just have to wait and see what happens!!! Prayers would be appreciated. =)