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

<3>

Wishing to go home....

These past two weeks have been probably 2 of the hardest weeks in awhile. Not physically, but just mentally and emotionally.

As some of you may know, this all started out, basically, when Spencer was discharged from the hospital the last time (June 1st). Last hospital stay he coughed up a little bit of blood, that stopped, but then he got a "cold" of some sort. They let him out, (shouldn't have, we come to find out) and he went home feeling pretty crummy. The bleeding came back little by little. Things were going 'okay' until the news of Spencer's dad hit him hard. He found out his dad has a serious and aggressive stage 4 cancer. This got Spence pretty down (which I don't blame him one bit) and just made things spiral downwards little by little. We were finally told that because the bleeding wouldn't stop that he needed to go to the ER to be seen... so we did.. and here we are again in the hospital.

This is the part that frustrates the heck out of me. We're back in the hospital - basically because his doctors didn't pay enough attention when they went to discharge him last time. They should have looked further into it. We found out that, most likely, the reason he was bleeding from his lungs was being he got a lung infection which caused some inflammation. When I get to thinking about this, the lung infection probably started the last 4 days he was in the hospital last stay... if they would have kept him just a little longer the last time - we wouldn't be here right now.. So i'm basically saying; I believe this could have been prevented =/

So when he first got admitted in here this time, they told him it was just for observation. They didn't see him staying in for 2 weeks because he looked good, his lungs actually sounded very good, and they thought things would turn around quickly and he could be out of here. Then we got word from the doctor a couple days after the admit that this was probably due to a lung infection and that they were going to start him on antibiotics to kill the infection and reduce inflammation. She was staying that this stay needed to be at least 10 days long so that they could get the infection and so that he wouldn't build up a resistance to the antibiotics. Frustrating, but understandable, right?

So we go for a few days.. thinking that he would be able to go see his father soon, and get back to school this coming Monday - things were looking good!! His oxygen needs went from 6 liters to 3 liters and they were saying his lungs sounds excellent. They said that he would do PFTs to see where they are and then they would consider letting him go home! YAY good PFTs and we're home right?!!! WRONG! They didn't even schedule the PFTs. =/ He was supposed to have them Tuesday, but he doesn't have them until Tomorrow!!! (Friday) Okay.. so Friday we do PFTs, they should be really good (considering how everything else is going) and we will go home!!! Just in time for father's day with his Dad, School for the week, and a nice family reunion next Thursday...

.....Maybe.... now they are telling us he needs to stay in for a full 2 weeks!!!!!! Now let me tell you - I am frustrated beyond all belief. Come onnn.

Please tell me why you would tell us that we need to be in here for 2 weeks when you previously said the following:

1) this is just an observation stay to make sure the bleeding doesn't get worse
2) we need to start you on antibiotics but we will try to get you out of here in 10 days

3) you sound excellent

4) he met his oxygen goal (to get down to 3 liters) ((and he's been satting very well))

5) he JUST got out of the hospital

6) he feels better than he has in a long time (aside from depression from all of this crap)

The PA is on our side... He doesn't feel like there is a need to stay in for a full two weeks... but the doctor isn't budging... I am so SICK of being pulled in two different directions. the PA has talked to the doctor time after time... and Spencer was supposed to see her several times, and we were told that she was going to come in today... never did... then the PA called Spencer and said that she was going to call here shortly so we should stay by the phone.... nope, that was 2 hours ago... never did.

WHY CAN'T WE GET AN ANSWER?!?!

I mean.. I understand that if there is a very legit and good reason why she is keeping him here - that it be important to stay 2 weeks... but she won't even talk to us.. We haven't been given a solid reason. Right now, as it is, it seems like we're just here.... to be here...

He has made the comment... and the point clear... that it is VERY important to Spencer to be out for father's day.. this could very well be the last fathers day he gets to spend with his dad. Not to mention that he wants to spend AS MUCH TIME with his dad as he can... He needs to..

Not only father's day.. but he JUST started school. We were just getting life on track. it's so so important that he can be in school as much as possible..

And then last, but certainly not least, There is a big big family reunion this weekend that we have been looking forward to... they don't come very often and he REALLY would like to see his family (who he never ever gets to see)...

-sigh- I just want an answer. I want the doctor to stop ignoring us... I want him home. He is getting so frustrated and it's really brining down his spirits.. His mood is slipping, depression seems to be increasing.... can they not see this? =/

I almost feel like there is something here that we are not being told..... regardless - I WANT TO KNOW!

I know this might seem like a minor problem to some of you.. specially those who don't know the full story... We're tired of the hospital... he was admitted 16 times last year.. we want to start LIFE..... and this is not at all helping..

Please pray that we can at least get answers... if not go home - at least understand WHY I can't take him home...

I've desperately been needing to vent... It helps.. but just not enough.. I need all the support I can get!!!!!

-Nikki

breaking points

You know those moments where you just feel like you can't hold it together anymore? When you feel so overwhelmed at life... You just don't know what to do next, heck even where to start. You just can't understand exactly why all of a sudden you are feeling this way and why you can't just ignore it.. -sigh-

I'm at that point... a breaking point and I don't like it at all. I guess I should have known it was coming - but it seems like it just hit so suddenly I don't know what to do with myself.

I'm angry. I'm sad. I'm frustrated. I'm lonely at times.

There are just so many things running through my mind... I can't get it to stop. I just don't know how. I feel like I don't have the strength anymore - and thats scary to me. I've always been this super Nikki type of person who did it all. Without complaining. Putting everyone first. Not careing about me, but loveing and careing about everyone around me. I have been the most selfless person..

But now... I want to be selfish.

I want to be the one who everyone loves and cares about. Who would drop anything to help me out when I'm needing it most....

I don't know what to think... I just want this to all pass over and go on with the way things are supposed to be... I just needed to vent..

I feel lost... =/