Day 21

So I'm trying to post in here at least once a day, whether it be just a simple picture, the blog challenge I'm trying to finish up, or my thoughts for the day... I'm almost to 100 posts! Something I never thought I'd be able to stick with... but I like blogging, a lot :)

Day 21: A picture of yourself ----- It is sad that I don't have any recent pics of myself?! I need to get with the program I guess! I think the first step with that is to get an adapter for my camera to the computer. it's about $25 at radioshack... I think I can get it for $5 online, but shipping will probably get me. Guess I'll have to do some looking a

round since we don't have ANY extra cash right now with the wedding coming up - it's killing me that I can't go out and shop here and there. Or when I go to the store - I can't just grab something because it looks good or because I like it. Praying that a job offer comes in soon. Sick of filling ou

t applications and nothing coming out of it!!!!!!! I need some extra money, especially with VR closing my case next month, Our wedding coming up

(SOON) in June!! We splurged on a DJ (DJ Express friends!!! And even better, we got Jesse Stevens... YAY he did all of my HS dances and proms.. It's going to be awesome!) Gas prices going up up up, and grocery prices going up around June. Awesome.

Anyway.. back to the picture...

My and Chloe. Love my kitty!!!!! Tried to see how she'd react to the snow - she didn't like it at all!!! Haha These were all taken by the FABULOUS photographer, Arielle Towers They came out GREAT! :)

Day 20 - I've had enough!

Day 20: Nicknames!

Oh my gosh I've had so many!!!

nickster - this was my very first nickname given to me by Colleen. I received a card from her when I was in 5th grade in the hospital at PSL in Denver.... the nickname has stuck - 9 years later!!!!

nickle, nik, NJ, Johnson, Pea, Niks, Nick-nack..... These are off the top of my head... And thankfully a lot of them have retired ;-)

Now off to my nest topic of the day... I've had enough - of SO many things. But today what is on my mind, is........

Spencer's health vs. The doctors

(His Primary CF doc is left out of these statements! - She's amazing and we have nothing bad to say about her!!!!)

I am so tired of whenever Spence is in the hospital the doctors seeming to go against him. What got me started on this little rant is about 15 minutes ago the PA and a doctor came in and informed us that, "So Spencer you'll be going down to rehab in a wheelchair today with someone taking you down since you didn't go yesterday."

UHM, Excuse us?!

This instantly made me angry. Spencer was VERY nauseous yesterday and threw up 3 times, while trying his best not to lose it many other times. (and he actually lost all contents of his stomach about 15 min before going down to rehab!!) Yet he did EVERY SINGLE vest treatment and he DID go down to rehab. He sure the heck didn't want to, but he pushed down there, his bucket and all in case he threw up on the way, and made it down. The rehab people specifically told him that he should go back to his room because he was throwing up. He did that and nearly lost it a couple times on the way back.

Honestly - I am VERY proud of Spencer for pushing through that nausea yesterday! That is something he never would have done a year or two ago. He would have refused his VEST and he never would have went down to exercise. But Spencer has changed. A lot. This boy wants to live. He wants every single day he can get. I can see it, nurses can see it, family see it, his amazing doctor can see it..... So why, every single time we're in this hospital does it seem like he's battling the doctors and why does it seem that anything he does is good enough for them?!? I'm fed up!!!

They were claiming that just going down there to rehab yesterday wasn't enough, he actually had to do something. Well excuse me? Do you expect him to pedal the bike while throwing up with 5 other people in the room... Uhmm I wouldn't want to. Isn't it enough that he tried? I know Spencer has had a bad reputation with rehab in the past, skipping, forgetting, not going.. but he has not missed a single rehab session this stay.... He's been 100% compliant with his treatments, therapies, rehab, and the like. Why can they not put aside the past and focus on Spencer in the NOW and what he is capable of. Spencer made the comment that he was VERY discouraged because it always seems like the doctors are coming in and telling him something that he "could" have done better. To me, this isn't the way it should be.

The poor boy doesn't have the support of nearly as many people as he should, and he can't even get it from his own care team? (the majority of them DO support him... but there are some that while we are in the hospital that we honestly feel almost working against us)

I hate seeing the doctors come in here and basically criticize him for something that he can evidently do better. Can't we ALL do better? Spencer's come a long ways and he's really taking huuuge strides to FIGHT and BEAT cystic fibrosis. He needs the help, encouragement, and support of a lot of people.

It's not too late to change, and he's doing it right now - I just hope people will realize this soon... very soon.

Day 19, realizing/reinforcing my passion

Day 19 - Something you miss

I actually miss a lot of things! I miss my family; my kitty Chloe; My best friends Emily and Sydney; The Sunshine and warm weather; Our home; eating healthy; Doing a bunch of fun things with Spencer...... And the list goes on! Being cooped up in the hospital seriously makes me realize how many things I miss!!! I feel so disconnected from the world! I get to see my family, chloe, Em and Syd very soon... in about a month!! =) After Spence gets out of the hospital I will get to be back in our home, I can start eating healthy and balanced meals again, and Spence and I will get to do fun things!!!! Next week for that! YAY! As for sunshine and warm weather - I wish I knew when I'd get to see it again!!!

On the forcast they are saying that we are going to get S N O W. Rediculous. BRING ON SPRING!!!!!

As we are in the hospital, we have our dog, Nacho staying with us. He's so good! And It's great for Spencer because he has to get out of his room to take him downstairs to go to the bathroom. =) Well the other day as we were taking Nacho outside, getting a DVD and some food we saw a little boy and his dad walking around. I smiled at them and we walked away to go get dinner.

As we were picking out which drink we both wanted, the little boy (being pulled in a red wagon) and his dad came up behind us and said, "excuse me, can he see your dog?" We get asked this A LOT when we take nacho out of our room. I'm so glad he can put smiles on so many peoples faces!

We said OF COURSE and as Spencer was having a hard time bending down, I took nacho in my arms and got on my knees so that this boy could pet and see Nacho. He looked SO sick and he was so very frail. My heart just wanted to break. But Nacho just lit this kids face up. =) I was telling him the dogs name and had nacho on the side of the wagon. He must have did something funny because the boy started laughing very quietly and had the biggest smile on his face. Something that I don't believe he's done in awhile.

I went on to tell him that Nacho was 3 years old. the dad says, Oh that's how old you are! And so I said, "Oh wow you're 3?!" Trying to get the boy to talk with me a little bit, as he was shy, sick, and wouldn't say a word. After I asked this he looked at me, smiled, and responded, yes I'm 3.

This about about the end of our encounter with the little boy so I thanked him for petting our puppy for awhile and left them on their way....

On our way back upstairs to our room it hit me, I realized...

man, this is REALLY what I want to do with my life. I want to help sick children. It's my passion.

My heart just lit up when this little boy, looking SO sick (Spencer thinks he has cancer due to the IV meds he had hanging up) started to smile and laugh and even speak because of Nacho and the attention AWAY from his medical condition that he was getting. It reinforced the idea that I NEED to work with kids who are sick. To help them FORGET about being sick, at least for a little while. I couldn't stop smiling and my heart was just so happy to know that we helped a family out, just for a few minutes. I was given such a huge heart, and I am blessed with SO much empathy.... A child life specialist is just the way to use this. I cannot wait to finish school and be able to work with children. I have such a deep passion for them. They are my life and why I do what I do!

Nacho also had an affect on a lady that same evening who was here helping her mother who had just went through lung surgery to remove some cancer. Nacho reminded her of her own dog in Nevada and so as I was getting food, Spence and this lady talked for a good while. He's such a GOOD DOG! Makes us happy he brings joy to others!!!

-nikki

Day 18 / update

Day 18 - Something you regret.

This is a tough one. I know it's pretty cliche to say this - but I don't actually regret anything. I honestly believe that everything I've been through, good AND BAD has shaped who I am today. I've learned a great deal from making those mistakes. If I wouldn't have went through those "regrettable" moments in my life I wouldn't have learned from the mistakes I made. Granted, at the time I would have LOVED to take it all back - but reflecting upon it now, I'm glad they happened because I know SO much more!

So no, I don't regret anything, but there are a few things that I wish I would have made a better decision about XD

So now for an update. Most of this is linked to Spencer...about 5 days ago Spencer came down with a nasty stomach flu and made him really sick. He was unable to exercise due to high fevers, extreme fatigue and throwing up. He wasn't able to keep a thing down. Poor guy. I think that if he wouldn't have contracted the flu things might be a lot different right now!!!

I am very proud of him for sticking with his treatments though!!! Even though he was nauseous during every treatment, he still tried to do his vest!!! And that usually makes him puke. When he didn't do his vest he did his PEP to keep his airways clear. He's really making progress when it comes to compliance and it makes me SO proud to say that!!! :)

So today we had his clinic appointment - I think in the back of our minds we both knew that he'd be admitted into the hospital again. It's been almost 3 weeks though that he's been out!! That's progress compared to the last couple of months!!! :D

Spence blew PFTs and his FEV1 had dropped a little bit to 23%, down from 25% last week. I hate that number.. hate hate hate! Blah He really struggled to blow his PFTs today. After the first one he went into a panic attack because he just literally couldn't breathe. Usually I just rub his back and pass it by, but it's different when you're not at home and the tech is giving him concerning looks. It brings things back into reality I guess. It was hard to see Spencer struggle THAT MUCH just to take, what we call a simple and easy, breath. Gosh it's heart breaking....

but anyway... that combined with a persistent high fever, increased cough, fatigue and every other symptom in the book they immediately told us that he was going to be admitted - we didn't even try to fight it because we both knew it was what he needed at this point.

We talked with the clinic RT and she is going to get him paperwork to fill out to get the cayston!! YAY! We're really excited and optimistic about this - anything is worth a try at this point. His doctor didn't have anything new to say, really - just that she would make an appointment with the liver doctor for Spence to see while he's in the hospital. that's going to be interesting. She thinks that one of the reasons he may be getting so sick is do to the fact that his liver may be getting worse. Ick. =/

We also went to clinic to see how close, or how far away Spencer would need to look into getting a transplant. We didn't know much about this - just that they put some numbers and variables in the computer and it computes this reading. So we asked the doc what it showed and she had them put in all the numbers. As we waited the clinic RT came in and told us that she was calculating the "5 year predicted survival".... whoa now. Those words struck both Spencer and I HARD. Yes we knew that it was going to tell us if we needed to look into a transplant soon - but no one ever said the name of it until then!

I think that Spencer said it best... He said something like 'I always knew I would die, but I have never had someone tell me the number of years I have left' and he let a few tears run down his face. It's SO hard to hear him say that. I told him that he didn't have to know what the results were - that the doctor could just keep it in her record, but he said that he needed to know. He needed to know what to expect.

So we sat there.. for what seemed like forever. With every person who walked by that closed door, every shadow I saw and every footstep I heard my stomach just lurched. I was nervous. And honestly, I was expecting the worse. I didn't want to - but I just thought that because the way things had been going this year - that something had to give and maybe this was our only option left.

Finally the clinic RT came in and gave us the results. She said that it gave his a 47% chance for survival to 5 years from now. She didn't really explain much about it. So basicly right now it's a 50-50 chance that he live 5 years? See I don't know. That number wasn't all that comforting to me. I mean, honestly.. I expected it to be worse... but for some reason I didn't take comfort in hearing that 47%. She said that she put in all the numbers from today... She said that she also put his highest weight, PFT, etc in from the past year... and it showed a 60% chance. So that's a lot more encouraging. I also think a reason that I didn't take comfort in that percentage is that becuase if it's not time to look at a transplant, then Spencer is going to get a lot worse. And that SCARES me. It already seems nearly unbearable to go through all of this with him. I honestly cannot imagine what it is going to be like when it becomes time to think about that. How much sicker can he really get? Yikes.

What did bring me some comfort though is the huge smile spencer got on his face when she said this - because he said "so then it's not time to look at a transplant?" and she told him no. he was SO relieved because I think it gave him new hope that YES he can improve and work his butt off to get better... I love this boy. He's amazing in every way.

She said that ways to improve this percentage is to:

1) Get his weight up (we're working SO hard on it!!! He was down 10 pounds from last week :( Probably combination of not being able to keep food down for about 4 days and he had some water weight last week) but this is just more incentive for me to cook healthy yet very high calorie meals for him!!!!!

2) Get his FEV1 UP. We're also working on this. The number one goal for Spencer this hospital stay is to go to rehab EVERY SINGLE TIME. and not miss even one, no matter how bad he's feeling. It's going to be really hard to get the number up - but the docs are shooting for FEV1 in the upper 30's upon discharge. -cross your fingers!-

3) Decrease exacerbation (aka CF clean outs or hospitalizations). The least he's exposed to antibiotics the better he'll be. So the longer we can stay out of the hospital the better.

This hospitalization they are going to do IV tobramyosin. He can't be on the IV kind very often because of his kidneys. But it's been 7 months since he was last on it and they think that he responds best to the IV form, so they are going to try that again. Also they are swtiching him back to IV meropenem. They think that his cocktail is the best bet for getting his PFTs up.

Please pray for his hospitalization to work and for Spencer to make a huge improvement. The last time he was admitted he didn't really respond to treatment. So it's really important for him to respond NOW!!!!

And to note... my baptism has been postponed for 2 weeks - bummer... but it's super important that Spencer is there for it!!!

Also another side note - SORRY to friends and family who are looking for wedding invitations in the mail! The company we have doing them is taking a REALLY long time to get them done! They made a mistake in the first design... so I corrected them... they changed it and changed the wrong date!!!! So I sent it back through email to be corrected... and I haven't heard anything. We are trying our hardest to get them out - So if you need ANY information (flights, airports, hotels, dates, times, arrangments, events... whatever) PLEASE contact Spencer or I ASAP and we will get you all the information you need to make arrangements to be in Kansas for our wedding!!!

It's June 3rd in Bird City, KS. :)

-Nikki

Day 17 - Big Decision

Day 17 - Something you're looking forward to

I am going to list THREE things I'm looking forward to

1. I am very much looking forward to my wedding day!!!! June 3rd - It's coming up SO fast and I can't wait! I am excited to spend as much time with Spencer as I possibly can, together, married... one. :) He's the lost of my life and I can't imagine not being with him. Gosh I can't wait!!!

2. I'm looking overly forward for THIS SEMESTER to be OVER!!!!! The last month has been really hard on me and, unfortunately, I've had to take an incomplete on one of my classes and finish it up this summer - but I think that decision was for the better. With Spencer's health, the wedding, and my own stress being so high this last month - it's been REALLY hard. I've wanted to Spend every moment I have with Spencer because I've really realized how precious life is and how much time I want to have with him while he's HEALTHY instead of sick...

For number three the second part of this blog "Big decision" corresponds with number 3 of Day 17.

What is the big decision you ask?

Well.... I've decided that it's time to get baptized and confirmed into the LDS church =) It's a HUGE decision and I'm really looking forward to it.

We were at church and as the sacrament was being passed out I had the STRONGEST feeling that it was time for me to get baptized. I really want to be able to partake in the sacrament and have it mean something. I love the feeling of the holy spirit and I want to be able to feel it more often. I want to be blessed with it. It's time and I am soooo ready!

Right now, the date is set for Saturday the 23rd. Spencer has a clinic appt on Monday and there is a chance he'll be admitted. It's VERY important for me that Spencer is at my baptism, and so if he will be in the hospital, I'm going to move it to a later date. So it's all tentative until Monday afternoon.

PS. Spencer's appt with the liver transplant clinic was canceled. They are just going to make it so that his liver doctor talks to him while he's in the hospital next. Works for us....

So that's day 17!!!!! can't wait for all these things to come! :)

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