Hotel de-Doernbecher needs no prior reservations...

Here we are again.
Tuesday.
CF clinic day.
The day we were due to end weeks and weeks of IV's....
The day we were supposed to come to clinic and then promptly return home...
ah...many are the plans in our hearts right? You would think by now...heck I would think by now that I would've learned that our plans mean nothing to Gods plans...so to stop making such plans. I think I'll get there one day...but it's not a mommy's nature to not plan. A momma with kids thrives on plans and arrangements...right?! So ya to not make plans...we'll see how that goes. But either way we made to to clinic and conner just didn't feel well. I gave him the choice if he wanted to be admitted or try to change IV's up at home...he chose to stay here. So we drove the hour home, packed and drove back here...phew lots of driving.
But more than learning to live w/o so many plans I'd say my greatest lesson in today is that words are so very profound and powerful. They have the capability of lifting you up, or cutting you down. You never truly know what anyone around you is going thru, you can't see thru the smiles on their faces into the despair they carry in their hearts, or know where they're going or what they're doing. I was cut off by some luny driver and i was already going about 10 miles over the speedlimit cus i wanted to get back here so I didn't run out of o2...and this guy as he was passing me flipped me off and mouthed some word that shouldn't be spoken...and rather than get mad at him, i felt sorry for him. shame on him. you know, on the freeway everyones driving with such a purpose and you have no clue what that purpose is...maybe its driving home or to visit friends or family, but you know what...? Everyday there are people on the road who are barely hanging on...who are rushing their kids to the hospital knowing full well that each admit growing closer and closer together can only mean one thing...and how dare people treat complete strangers as if they don't matter? as if their purpose for driving was more important then theres. He may have been on his way to a meeting, or home, or to a hospital as well, but he has no excuse for doing that, shame on him. So I guess it taught me a lesson today...about words and their power. CF is a horrible disease, but words can destroy you faster than any disease ever can....so chose your words and actions wisely...especially to strangers... cus you may be driving to some happy destination...but the person your flipping off may be headed into a desperate situation, clinging to sanity and needing loving support....
so we're here.
ya for that.
chat soon.
and chose your words carefully

GOING HOME!!!

Today is go home day for us....and we are very excited to do so. Over this past 8 days here we've met with each CF doc individually, both social workers, the nurse coordinator, child life, the chaplain and The Bridges hospice team. We feel secure in our right now plan, I'll call it. We'll continue the IVs for a week, bring him back to clinic and then decide then what the next step will be, and so on. I don't feel we're ready to make big, concrete hospice verses hospital decisions and I feel relieved to have finally realized that we don't need to yet. That nobody expects us to. That its perfectly ok to live in each day and when things progress, just go with the flow. I like that. So we'll meet the local hospice team and see what they're all about, and keep it in our mind, I crave flexibility. I don't feel comfortable yet saying home verses hospital. We're very connected to each one, for many different reasons. But I need to know it's ok to just have these conversations and over the next few weeks or hopefully months and MONTHS we'll just make each small decision as it becomes necessary...and it wont be as daunting as making one large decision right away. The Doernbecher CF team is extraordinary. They are compassionate. They are very loving and loyal. and most of all, they are heart broken over this as well. They are extended family by every sense of the word and to just walk away from them and not have them help see us thru every aspect of CF, the dyeing as well, is just unimaginable to me. You'd never probably understand that connection unless you've walked in it, which unfortunately many of you have, and I pray that more of you don't ever. But having intense doctors help and intervention since i was 18 weeks pregnant with Conner man and now 7 years later to just walk away from it all, is beyond my capabilities. They've been our miracle. These doctors saw me thru my pregnancy, they helped drain his little bladder when he was in my tummy struggeling desperately for life, they've seen him since he was brand new in the nicu and thru 26 different admits, thru his 105 degree fevers from the Zosyn, thru his rushed make a wish, and I simply can't live without them. and i'm so glad we don't have to.
So yes we are going home today from the hospital...not because he's well, but to just keep living each day and enjoy it and find the quality in each second until there is no more. and I think it's kinda wierdly beautiful. So he'll do another week of IV's then go to clinic and decide the next week and so on. and for now, that is the most perfect plan I can imagine. get out of here, and live our lives, fill his remaining time with experiences....fulfill his every wish and condense 60 years of living into whatever time remains. Such beauty i think. I think we'll all be better for it. Facing death forces you to live in the now and do each thing you can't make it thru your life without doing. and I'm excited to see where all we go...I do know though, that first stop is a visit and meeting with his best pal Grover here in Portland within the next week...Sesame is in town for some shows and Grover can't wait to meet Conner man. And from there...let the experiences roll..........
Love
Sarah

Here we go again...

Well...
The past few days Conner has had this very random fever only in the evenings. He's done this before, and we couldn't figure out what was going on. He's been on his oral antibiotics for almost the 2 full weeks, with a week off prior to that, and then 2 weeks of orals before that as well...its been a crazy year, he's only had 2 weeks off of extra oral antibiotics or IV's. He is due to end his oral antibiotics tonight. But I think we're not out of the woods just yet.
Yesterd​ay he kept getting progressive​ly worse, and now today he's really out of breath, can't talk much, can't walk much, really can't breathe w/o 3 liters of oxygen lyeing down on the couch. not good. His oxygen rate has been low the past few days as well. I've put in a call to the CF nurse Ben, and I believe we'll be taking Conner back to be admitted to the hospital again. Such a bummer.
See, CF has a way of doing this, trying to destroy plans and our spirits. But little does it know, that I refuse to let it destroy my fight against it. Next Thursday night is the CF Foundations Chefs Dinner where I'm speaking my "hate" speach against CF and I will be there even if we're in the hospital. I will not let CF destroy my fundraising fight against it. no way. no how. While I completely respect CF for the demon that it is, I think it doesn't realize the demon fight in me to bring it to extinction. I think CF doesn't realize the determinati​on us mothers feel to protect our kids no matter the cost, the fight, and no matter the suffering.
I won't pretend that this doesn't hurt us as a family. It will devestate Hunter to be seperated again. It will make going to work almost impossible for my husband. It will bring me to my knees in pain to be away from my family again, and to watch Conner endure this pain. It's going to make it all "real" again. But I know we'll find a way to get thru it. Luckily for us, they have lifted the rule of no siblings on the hospital floor...so maybe the boys can come to visit us and that'll ease this pain and make the transition easier.
Well and more than that, maybe they'll find the perfect combination of medicines to get him well faster, and get us out of there and back home sooner. Nobody knows, only God. and I will just continue to rest in his plan.
I will keep you as updated as I can.
Love
Sar​ah

Another admit BITES THE DUST!

"You're going home tomorrow!"

Those are words that I never tire from hearing.

Finally..............

This is Conner's 9th or 10th admit this year ALONE. The MRSA that has taken residence in his lungs have led to this horrific year...that thankfully...is ALMOST OVER! You know I have never really cared what year we're in, or about New years...never made a difference to me one ioda! but this year...THANK GOD IT'S ALMOST OVER!!! I've gone back thru Conner's mychart account here at the hospital and he has spent OVER 200 days of his life here in the childrens hospital. he has in turn spent another exactly 202 days at home doing home iv's...and has spent another 159 days doing home oral antibiotics all to fight this horrible disease! For those who are math savvy that is almost 2 years of his life....and he is only 6!!!!

But let me put it into perspective.

HE FIGHTS EVERYDAY OF HIS LIFE!

To do the things we take for granted... he fights to breathe, he fights to have enough oxygen to breathe AND eat at the same time, he fights to have the energy and strength to walk thru a grocery store w/o getting winded, he fights to keep his supplemental oxygen needs to only night time and not daytime as well, he fights to digest his food, he fights to gain even half a pound, he fights with the constant desire to be "normal" with his friends and not be tied down to his over 15 daily therapies, he fights he fights he FIGHTS...

And as a mom, i watch him fight.

i ache.

i suffer.

i feel soo overwhelmingly helpless.

It is by the grace of God that I can put a brave smile on my face each day.

That when people ask me how Conner or I are doing, that I can somehow say "ok." Because we are FAR from ok...

It kills me to see him out of breath, gasping...I've seen the inside of his lungs, he is fighting for each breath he gulps in. I bravely hold his hand when they put that push pin sized needle in to access his port for Iv's as they have since he was only 3. 3 people! Most people with CF dont need ports until their teen years or beyond...he is 6 and is on his 2nd port because his veins are SHOT from all the PICC's and Iv's they've had in them from birth. Hell he was stuck with needles when he was in my belly. You wanna talk about perspective...my son truly believes he is LUCKY to have a port. That kid is amazing beyond his years. AMAZING.

So we are getting discharged tomorrow probably early afternoon after his 2 iv's at noon. He will be on iv's until next monday or so. Christmas week. already. The week where we were planning on doing preventative iv's for his upcoming make a wish in early january. heartbreaking that these iv's in fact are not preventative in any extent of the word. they are to help fight the mrsa that is taking over his lungs. So he will be done with his almost 2 months of iv's on monday. he will get exactly 7 days off from iv's, then will restart them the monday after Christmas for Hawaii. We are looking at possibly doing oral antibiotics while he's in hawaii to make sure that he stays well so far from home.

Each night I pray for a cure, i spend hours of my day praying for a cure, or crying on the inside, putting my brave mommy face on for my son...he is much stronger than I am, there is no doubt about that. He is a CF Warrior...he takes this battle head on with a strength I will never know or fully understand. I cry when I have to get blood drawn...BOO FREAKING HOO...seriously! He inspires me to be stronger, to be better, to live in each moment, to be more patient and more understanding, to fight alongside him for a CURE. He so deserves it. All those with CF and their families deserve it. In the grand scheme of things in my life...truly...nothing else matters, not what year it is, not one little thing.

only a cure...