A date has been set!

Time to post something exciting! For anyone that follows my facebook - you will probably already know that I'm engaged =) I am SO excited about it! At first we didn't think that we could get married until after I had a REALLY good j0b as a CNA or else had a great job as a nurse. Reason being is because of insurance for Spencer. With his CF, he would have been dropped by his moms insurance - and even though he has medicaide... they pay for SO much! So we were thinking that I had to have a good enough job that would offer family coverage... Well THANKS to Obama and his health care reform... Spencer's insurance CAN'T drop his coverage =D... which means -drum roll- WE CAN GET MARRIED!! Insurance is no longer an issue. We are still looking into it to make sure that ALL of our bases are covered... but it sounds, so far, like it's a go!

So even with the insurance issue figured out... we were still going to wait a year or two due to Spencer's health and my schooling and working and loans and debt and you know.. all the "real life" stuff. Spencer wanted to make sure he was in tip top health before we tied the knot, he wanted his immediate debt payed off before we started our life together.. And I kind of wanted to be little further into school and maybe a year or two older.

But Life had to interrupt and Spencer's dad was diagnosed with a terminal, untreatable cancer.. =( And it was really important (REALLY) to Spencer (and myself) that his dad be present when we get married. So we decided to bump the date up even further.. and we went with... -drum roll-

JUNE 10th 2011!!! =) And we couldn't be more happy!! There isn't TOO much significance with that date, really. But more of our family could be here in June, after school is out.. and one of my favorite numbers is 10.. so we went with it =) Planning is a lot of fun and we're just doing the basics right now. Figuring out where we want to have it, guest list.. we want to get as much done as we can sooner rather than later and we also want to spread it out so that we won't be so stressed out! Because stress = sickness for both Spence and I.

It's about time that something good happened between the two of us! It seems like his health has taken TOP priority lately. He's been a sick dude this past year - but he seems to be doing pretty well now! I'll write another blog about that in a few days.

All-in-all - we are VERY excited and I just wanted to share!!! :D

-Nikki

Quick blog

I know I haven't written in here recently... I've just been really busy, not in the mood to blog, finally in the mood to blog but no words to type what I was feeling...

But now.. I just want to write real quickly.

Spencer is in the hospital again.. Minor setback... He was doing SO good with his lungs, and then he coughed just a little too hard which stretched out his lungs to where they leaked a little bit of air. I am SO thankful that it wasn't anything any more serious. I don't know if I would have handled that very well.

But I'm just so frustrated and upset. It just seems like it's one thing after another. Things start to go just so well - and then something random happens that sets him back.. =( He was doing SOO well!!! He was fighting some depression, but he had an appointment for it which would have started to get him back on his way emotionally. But that appt was Wednesday - he's in the hospital.. He isn't going to make it to his appt... therefore it has to be set back.. AGAIN. =/ I want to stay so positive.. I really do - but it. is. so. HARD! When things keep happening, I can't always be happy go lucky about the situation.. I just can't.

They also started him on antibiotics.. which means.. instead of staying a few days or a week until the air out of his chest went away.. we are looking at a full TWO WEEKS.... AGAIN in the hospital. Now I can't say this for certain.. they might decide he is just fine and can go home.. but with his doctor.. if he starts antibiotics.. he stays on them for two full weeks. I understand.. but it doesn't make me any less frustrated! I was hoping he'd be home soon so that we could enjoy the week I have left before my life gets CRAZY because of school starting... Guess that won't happen =/ the week before my life is back to the old grind and we're spending it in the hospital.. fun stuff, let me tell you..... U.G.H!!!!!!!!!!!!!!!!!

Buuuuut....... I'm trying my best to be positive. To think positive.

Positive Thoughts:

Spencer has improved

His doctors are starting to believe he is being more compliant

He was doing SO good at keeping up with meds and treatments

He made me proud

This 'set back' wasn't serious

This didn't threaten his life like the 3 times last year

He is going to be okay

He's still the same ol' Spencer!

He has a chance to improve in the hospital even more to get beyond his "normal"

I think that's a pretty good list.... now only if my mind would STAY on that LIST!!!!

I guess this wasn't as 'quick' as I thought it'd be.. I just got to typing and couldn't stop... eeesh!

Living Life = Getting Sick

And with my last blog post about an amazingly fantastic day... came over a week of concentrating on feeling better in the hospital.

Spence got himself pretty sick - from my understanding with a talk I had with his doctor... He was sicker than he's been in a long time!

All because he was living his life. Just trying to live and be with family.

We were with family a couple weeks ago and we all went swimming. As I posted before - Spencer got in the water for the first time in 4 or 5 years. He had a blast... but made himself really sick. He wasn't very careful about his oxygen tubing in the water and didn't change it out right away - so therefore he ended up giving himself another lung infection because of all the germs in the water. Frustrating! he expressed to me how upset he was by just saying that all he was trying to do is be with family and live life - unaccording to CF. I mean; who can blame him?!

He was trying to do everything at home possible to stay out of the hospital.. but as time went by - the infection just got worse and the poor guy couldn't breathe. Man it is so hard and heart breaking to watch someone you love gasping for air and struggling to breathe. What we take for granted he has to concentrate on every second of every day.... and it sucks.

He was going to try to wait to go in on the 6th when he had his next clinic appt. But he ended up having me take him into the ER on Sunday due to lack of energy and not being able to catch his breath. Blood tests showed that he was really sick and they admitted him.

Usually he sleeps the first 2 days.. gets the antibiotic blues (nauseous while adjusting to them) for 2 to 3 days.. and then feels so so much better. This time it took about a full week for him to even start to get to feeling better.. and he still has no appetite.

But here's the strange thing...

He went in with a super bad infection - yet they are thinking about discharging him on Monday (the week mark) instead of the two week mark.. uhmm what?!

Here's the thing.. He's been doing extremely well lung wise lately! I couldn't be more shocked! I haven't ever seen him improve and bounce back this quick!

On Friday he went down a full 2 liters of oxygen in a matter of a day.. from 5 liters to 3. amazing. Last time he was in the hospital he was on 8 to 10 liters while exercising... this time.. he only has to be on 5 to 6 liters. how. The RTs are saying his lungs sound fantastic and that he's doing so well. It was the PA who told him that he would go home Monday, if his PFTs were up... so who knows if the doctor will let that slide or not...

His PFTs when he went in were at 30.. a typical number for him upon admit..

His normal range is around 40... I really hope when he does PFTs on Monday they are excellent!

The thing I question is... even if he is so much better at the week mark... is there a chance that he can improve above and beyond what his average is if he stays 2 weeks?? He wonders the same thing.

I would love nothing more than for Spence to get to come home on Monday... but I would rather him work to get beyond his normal... The hospital is the best place for that to happen. I want him to stay out of there longer this time. I want him to be able to live his summer!

So he's going to question the doctors on Monday to see if maybe it would just be best if he stay for 2 weeks...

Guess that's all for now.. I have more to write but this is getting lengthy and I would be switching subjects anyway... So I'll save it for a different blog..

Praying that Spence can achieve maximum health this hospital stay!!!

Amazingly Fantastic Day

Wow - what. a. day. I think this has been one of the best day's I have had in awhile. Not just for myself.. but to see other people happy. The whole crew (Riddle's) made today a hang out day. We went swimming for a few hours and then went in to play Settlers. Spent most of the time talking - was fun!

I think the biggest highlight for me was Spencer getting in the water. Wow - I've never seen him in there before. It's been well over 4 years for him. Because he's on oxygen we haven't ever been swimming together. But since it was in an apartment complex swimming pool, He hooked up his super long tubing and got in the water for an hour or so. and it was AMAZING. :) It just light up my heart seeing him finally screwing off his CF and just doing what he wanted to do. SUCH a good feeling. He had so much energy today and was so active. I couldn't be prouder and more happy about how today went!!!

The one down thing about today - I realized that I seriously need to get in to see a GI. =/ I've really been neglecting my health more than I should be. It all started with me getting minor stomach cramps after I ate.. That continued to get a little better over time. But depending on what I ate - I'd feel sick. My bleeding came back, bright red, so I know that it is from my lower colon/anal/rectum area and it's also gotten worse. At first it was just here and there, but It's becoming a slow, steady bleed which is concerning me. My stomach has been feeling okay - but I've been more tired lately with less energy. So I'm wondering if my iron/hemoglobin count is falling a bit. It's been so long since I've been worried about the turn my health is taking and I'm starting to get really frustrated with myself because I haven't listened to my body.

I am 2 years over-due with scopes.. Which scares me too. When I was scoped a little over 2 years ago I got news that I was very inflamed in my colon and I had developed pseudo-polyps. The plan was to get scoped once a year to remove polyps should they develop, and if not - just keep an eye on what's going on. Also since I've had Crohn's for over 8 years - I am at a very increased chance to get colon cancer so I should be screened at least once a year. They also found a stricture somewhere down there and so I need to have that watched to.. Just build up of scar tissue... =/ I have neglected this big time and I'm just scared to get another one. But it's time... It's just that time.

I've also been off all my meds because nothing has worked. I either react to them all or they just simply have no effect. I was last on asacol and Humira. The Asacol didn't seem to do a thing and I reacted to the Humira (site reaction/hives) So I stopped that. Also my insurance ran out (kids, on my moms) and so we couldn't really afford anything.. so i've been taking the bare minimum. Nothing for my Crohn's. I need to figure out a med combination because it's really bad to be off all meds. With Crohn's, it's auto-immune so the inflammation just keeps comming (most of the time) and so you have to have somethingg to suppress it. ya.... Nothing has been suppressing mine - I'm scared to see if anything is even getting through down there... (which ya, i've been really constipated.. yikes.. with the stricture being there, that might not be good.)

So I guess tomorrow I'm going to be calling the GI clinic here in Salt Lake to see a brand new GI.. Wish me luck.. I HATE HATE HATE switching doctors.. it's stressful and a bit scary.. ugh. Not looking forward to it.. but this has just been a blunt reminder that I do have a chronic disease and it gets worse before it gets better...

-Nikki

Spencer found this poem this evening.. And I thought that I would share it. It is an AMAZING poem. It instantly made us think of Conner and his family. Breathe Easy little guy. We love you and you will forever be in our hearts.

God saw you getting tired

A cure was not to be,

So He put his arms around you

And whispered “Come with Me…”

With tearful eyes I watched you

and saw you fade away.

Although I loved you dearly,

I could not make you stay.

Many times I've thought of you,

many times I've cried,

If love alone could save you,

you never would have died.

A golden heart stopped beating,

your tender hands at rest,

God took you home to prove to us,

He only takes the best

Breathe Easy

Little Conner earned his wings last night. It just breaks my heart. How can such a little guy so full of life lose his fight to Cystic Fibrosis. -sigh- I hate CF. It's just not fair. I hate it so much.
He was in a lot of pain. He was suffering last night. But now his lungs are full of life. He can BREATHE. That is the most relieving thought. He can breathe and go run around like any little 7 year old can. He's not in pain, he isn't struggling to stay awake. He's Conner.. just simply, Conner.

On another note... I follow the Groettum Family's blog and she has a photo challenge every Friday that I want to start doing :) Rules are that you don't edit any of your pictures and everything is like it is. You take pictures per her request and share them with fellow bloggers. I enjoy taking pics and so I think starting next Friday I'll attempt to do it! Yay!!

-Nikki

Heartbreak

I know almost everyone has heard the story about little 7 year old Conner and his fight against Cystic Fibrosis. I've been keeping a close eye on Sarah's blog and it just sounds like Conner is losing his fight to CF.. it's heartbreaking.

How can a little guy so helpless be cursed with this disease with no chance of living a full life.. I'm sad. My heartbreaks. My anger shows. My frustration breaks loose... =/ I so badly just want him to be able to live to see his next birthday... to spend more time with his family. But I know he's in severe pain and he desperately needs to escape it. My prayers are with him to be pain free and to not be scared. And my prayers are with his mom, dad, brothers. Just so they can get through this rough time with their first born son.

Along with this.. my heart breaks for other reasons.... It makes me realize how brutal CF is and can be. It doesn't matter who you are, how special you are.... it takes you and it's just not fair. What is happening to Conner right now, is going to happen to my best friends some day.. And I know it's going to happen to my best friend and my love, Spencer one day too. and it's hard to grasp. I know we don't have to worry about that moment for years (at least I pray) and that we can enjoy the life we have right now. But to think that he is going to be in that position one day killlls me. I am going to have to go through the loss of my husband and that is a hard concept to understand. I try not to think about it - and I'm trying to divert my thoughts elsewhere right now... But seeing little Conner and his family and how they are struggling to get through the day - it makes me wonder what it's going to be like when we get to that point.... yeaars from now.

But for now.. we fight and we fight and we fight some more. And we love and we conquer and we live. We live our life. Live and breath to the best of our ability in the present. We can't live in the past or the future. We have to live in the present and enjoy our current life.

Live and breathe....

and love, love, love

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