The trip of a LIFEtime

Gosh...I'm not even sure where to start. my heart is swelling with the love that was shown to us this past week, that will live with us our entire lives. There's simply too much to tell. The stories of generosity, support, and love from family and complete strangers alike. This trip far exceeded our greatest hopes and Conner's greatest dreams. Pictures really say it all, and we took, almost 900 of them on our own cameras. But the grandparents took more as well.

He saw whales, whales everywhere...he saw lava...he went in a helicopter, he went swimming with the dolphins and fed them fish, he received a lei greeting, he swam in the ocean and pools, he saw a hula show, he went to an authentic luau and saw the fire dancers, he saw his dad and mom do the hula on stage, he saw his papa attempt to blow a conk shell to start the luau, he saw what humidity does to his baby brothers hair (CRAZY!), he went in the cockpit of the hawaiian airlines plane and learned to fly, he got the pilots REAL pilos wings (not fake ones..his own real one), he saw a mongoose, he saw plenty of beautiful flowers, he saw black sand, he saw spinner dolphins and bottlenosed dolphins, he went on a whale watching cruise, he saw the entire island by helicopter, he joined the thousands of locals and travelers who write their name in the black lava with white coral rocks by writing out his name to be there for years to come, he had a Hawaiian pastor pray a healing blessing over him, he left his footprints in the crystal white hawaiian sand, he buried his dad in the sand at hapuna beach, he picked out gifts for his friends, he had time for lots of hugs and kisses for his family, he saw water as blue as he'd ever seen, he saw Gods beauty and grace everywhere, everyday, and every minute.

I can't even begin to say thank you to those who helped us get there by prayer, support, money donation and grace. Conner received over $530 from people we met on the island, when they met him and heard of his story and struggle. People were just so generous to our family. Their generosity made his wish of swimming with the dolphins come true, another persons generosity allowed him to buy the hawaiian airplane he had his heart set on, another generous gift allowed us to be able to go to the authentic luau, another gift bought us meals for the airplane and tonight for dinner just the 5 of us. he was able to get and do everything he wanted. Yet he shared with his brothers and family. His heart is so generous.

There simply aren't enough words in this world to describe the way I feel about this trip. The way we all feel about this trip. How greatful I am, how I am the luckiest woman in the world that I was chosen to be his mother, how blessed I am to be able to hug him and kiss him whenever I want to...to know he's ours, if even for just a moment longer.
No, I'm not a dancer, but to fulfill his wish of me doing the hula in front of an audience was a no-brainer for me. I got to see him smile because of that. Who cares that I looked ridiculous. To see the smile on his face for getting to bury his daddy in the sand which he's been talking about for weeks was heart warming.
Yes he struggeled a bit to breathe, sure he wasn't feeling very well for most of the trip, and of course he missed out on some amazing island food because he was too ill to eat but oh my gosh...he did it! what an amazing journey. He got to do it! and he LIVED every minute of it to the absolute extent of his abilities. He cherished it. He loved it.

there's simply just too much to say, too many stories to share. and simply not enough time or even the words to speak it aloud...just know that God was ever present on this trip, I felt him from the tips of my fingers to the tippiest of my toenails. He made this possible. He brought these amazing experiences to reality and planned them out so perfectly. because he loves us. because he's there for us. because thru all our struggles these past years he's proven to us without any doubt that he infact, will NEVER leave us. and we, as a family will never be the same again.

simply amazing

CF may have won this battle, but NOT the WAR!

Well here we are, still sitting at Doernbecher Childrens Hospital in Portland OR....still on IV's... still having 104 fevers...and still NO ANSWERS! Everything comes back clean. Looks like Conner is mystery man these days. He has had these high fevers for 5 days now. It has gotten very old! Conner's sputum came back with pseudomonas and mrsa. and i just KNEW that once they had us end his TOBI nebs that lovely PA would come right back...well so it's taken a few months but yep it's back. I hate this combination. The inhaled Gent that he's on covers both mrsa and PA so we will not be going back to Inhaled vanco i believe. They have not told me yet if we will be restarting TOBI every other month again. I hope not. That would make his treatments so long, don't get me wrong we will do them, we don't skip treatments, but gosh it's so much easier to not have all of these extra neb treatments. At least now he's not in school (i've pulled him out since early October for home tutoring thru the school district to limit his exposure to the h1n1 etc) so we have no specific time we need to get treatments done. But i do have 3 children that need me. They need all of me. We don't get much time away from the hospital or clinic these days so when I'm home I try SO hard to be there for my other 2 boys. I miss them to peices when Conner and I are away at the hospital, and i KNOW they miss me too. Little boys need their mamas!
So Conner's on Zosyn IV, Tobi IV and Zyvox IV and theyre using inhaled Gent to fight the lung bugs too. I sure hope that these start to make a difference soon so we can get outta here.
Speaking of which...we were scheduled to fly out tomorrow for Conner's make a wish. That has been postponed. We are shooting for a departure date of Wednesday. I hope so much we can get there this time. He has to be rid of these fevers. Doc says his lungs sound so much better then they did on admit last week. I'm sure they do because last night he threw up a TON of lovely mucus from his lungs (YA CONNER!)...so the fever is our last hurdle.
Peds pulmonary doc changes tomorrow, but the doc we had this week relays all thats gone on to the oncoming doc...and of course we know all 3 CF docs very well. So Dr Wall will be on board to get us outta here as soon as possible to complete Conners one heart felt wish to go to Hawaii to fly in a helicopter to see the volcanos and lava...and to go on a whale watching trip...
we'll get there i know it.
but dang that CF for once again foiling our plans. We never make plans in advance anymore, because Conner's health is just so fragile anymore, but you have to plan a date for Make a wish of course and look where we wind up. So the lesson in this is...to really live ONE day at a time, and not to worry over tomorrow...for today has ENOUGH worry in itself!!!
I hope to write soon to say that we're going home!!!

104.5 Fevers means No Make a Wish on Monday

Conner has been on Iv's nearly 2 weeks now. He has been in the hospital since Monday. Since Wednesday night he has been spiking fevers ranging from 102.7-104.5 and the docs are stumped. they've run tons of tests. tons of cultures. 2 xrays, cbc's, blood sugars, viral cultures you name it. no answers.
His sputum is still in the preliminary status and it's showing that he's growing a gram negative bacteria....which is quite interesting. Usually MRSA is our dear friend in both the prelim and the final culture. I know my BFF mrsa will be in the final but we're very curious what this new bug he's growing is. I feel it's pseudomonas again. What a horrible combination, PA and MRSA. I hope that I am wrong. Conner's current IV's both cover gram negative bacteria so he's covered, it's now just a wait and see whats actually in there.
His make a wish was scheduled for Monday-Saturday in Hawaii, the big island. Well, unless these fevers break like NOW that won't be happening. I've been in contact with his wish fairy and his contact at MAW and they ensured me that he can get there, they can make it happen with 24 hours notice. So we know we will get there. we just don't know when.

I am beyond flustered.
I am beyond exhausted.

I'm ready for this nightmare to be over with.

Familiar with Genomycin?!

So Conners dr wants to switch him from inhaled vancomycin to inhaled genomycin for his frequent infections. we tried it inpatient today and phew...i got the WORST headache. during that RT session though he also did his hypertonic saline, which usually doesn't bother me at all even sitting right next to him, so I don't know if it's the combination of the two meds or if it's just the genomycin...
anyone have similiar issues?
We stopped his IV vanco as well and changed it to IV zyvox so we'll see if that works. we've also switched him from VEST to PEP and that seems to help him move more mucus.

make a wish in 6 days....

we shall see if this med switch is enough!!!

Extra prayers for Conner

Conner is getting so excited for next Monday....thru Saturday actually! It is his Make a Wish trip to the Big Island of Hawaii for 6 wonderful days where he will get to ride on a helicopter to tour the island so he can see real lava and volcano's and to go on a whale watching trip since he loves whales. We are getting excited with anticipation as well. Conner's make a wish send off dinner is this Tuesday evening at his favorite restaurant, Izzy's (HA!) where his wish fairies give him his plane tickets, spending money, and itenerary. This is his most heartfelt wish and I'm forever thankful that Make A Wish was there to help us get Conner his wish a reality...

However...he's been on home IV's a week now, we planned to start them to make sure he's in the best health possible before we left on his trip, but he wound up needing them anyway, so it was kinda perfect that he started them when he did. But over the weekend he has gotten worse. Thick, nasty cough that we've grown so accustomed to has come back to test us. His oxygen has plummeted to around 86-89% so he's been requiring oxygen most of the day now as well as when he sleeps. He even spiked a fever on Friday night. This same thing happened just a few weeks ago and it put us back in the hospital just before Christmas. The timing couldn't be worse since his hawaii trip is in 7 days...
I will be calling CF clinic tomorrow, maybe take him in to see them or see about also getting a home oral antibiotic to help him fight this new infection so we can make it on our big trip. Of course make a wish always told us the wish can be rescheduled, but I don't know how far in advance it'd have to be changed, and also...I don't want CF to win. Seriously, it is taking my son's health, our families peace, our son's childhood, and now it wants to take Conners biggest wish away too!!! unreal!!!
Please keep him close in prayer, that he can beat this infection and make it on his big trip.

Trying to catch my breath...

Today was just kind of a wierd day for me. Full of ups and downs, and stress and happiness. Which is kinda funny, because it really has NOTHING to do with christmas in 3 days...I've had my presents purchased, wrapped and under the tree since black friday...yep Im one of them...I've learned I have to be. We got out of the hospital the day before thanksgiving, and so even though i was sick i got up at 3am and stayed out feeling crummy until i had everyone taken care of, because my son's health has been so up and down this year i knew i had better get it done. We also bought our xmas tree that day and got the house decorated that day, because last year we were in the hospital for the first half of december so we didn't get any decor out. So this year i was proactive, and good thing because we wound up in the hospital again two weeks ago and stayed a little over a week before going home on IV's. So this year we do get Christmas, I made sure of it....

Conner's IV's ended today, and while this should make me happy (and in a little way it does of course!) now the worry begins...i hope he can stay well thru Christmas, until we can restart IV's next monday...for his make a wish trip jan 11-16th...

today i got conner's itenerary for his make a wish trip to hawaii emailed to me, and it tore me apart....LITERALLY. i cried reading it, I am so thrilled for him to FINALLY get his one heart felt wish to come true. honestly, i always knew he could do make a wish, but i thought i'd wait til he was older and could really find the ONE thing he wanted more than anything...but since the docs urged me to do it when i met with them a few months ago...(another story for another time!) i knew i had better get on it! many kids want these extravigant fun filled trips, and we will have a great trip in a great location but get this, his wish was to "relax on the black sand beaches of hawaii" that tears me up. he is 6. he should want to visit disneyworld, or sixflags or legoland, you name it, but his wish is to relax. that is so precious...and heartwrenching. while in hawaii he gets to fly on a helicopter to tour the island and to see the volcano and lava...and he gets to go on a whale watching cruise. i am so thrilled for him. there is also 3 days where we get to do whatever we want to, well 3.5...so i've found hawaii's BEST black sand beach...he deserves the world. and while i am excited for this, i wish more than ANYTHING that he didn't qualify for make a wish, that he had a greater prognosis...that CF was a disease we simply have heard somewhere before. unreal...pinch me....i MUST be dreaming that this is infact OUR life...

today home health company came and delivered his new bipap machine.

ouch.

let me preface it by saying that I am thrilled that after 2 months of fighting his insurance gave us the ok to try it out for 3 months...and I am thrilled at the possibility of it breathing for my son in a way so he can get a more restful nights sleep, hopefully helping him to have more reserves to fight off his frequent infections. Conner's ok with it, he is not wearing it tonight, he picked his favorite of the 3 masks and we're cleaning it and all the tubing tonight and maybe tomorrow he and daddy will have "star wars jet fighter" night...to help him feel comfortable wearing it. i pray it will work. i am hopeful. If anyone's had any bipap experience i'd love any advice you have to help him accept this. this kiddo has put up with so much and he is so brave, and i want to make this the easiest transistion possible. but it still hurts me because it's yet another step in the wrong way of his disease progression...first i cried when we had to do home oxygen at night, i never wanted to have oxygen in my home, i never wanted it to get that far...and then it not only become an everynight thing it has slowly crept into more and more days as well, and now the bipap is coming into the mix at night with his oxygen...and my heart is just heavy.

i can't remember the last day i made it 24 hours w/o crying. he is so strong. he is strong for me. i can put my brave mommy face on...but not 24/7...the pain and the worry is making me very impatient and irritable. Pray for a deep breath of fresh air for me....a renewed energy. a renewed focus. a new drive...a new sense of purpose...a new fight in me!

tomorrow night we are taking the boys to the portland international raceway to see the big christmas light show. they are very excited and i am very excited to take them. and gosh then it is christmas eve!!!! who can believe that?! already!!!

do you know that this time last year, since we had no real xmas at our house from being in the hospital, i actually thought "gosh, i know next year will be better!".....how could i have known the heaviness that would consume my entire soul only one short year later. the worst year of my life. the worst year of conner's life. the way i have distanced myself from people i know and love. the overwhelming sadness in everyday, yet at the same time the absolute HOPE in each second i spend with my son, healthy or sick. How could i have known that just one year later i would be consumed with the thought of losing my son on a daily basis. i have to say this mom gig is the absolute hardest job i could imagine. and since none of my friends and family can TRULY relate to this grief i'm feeling (and i PRAY none of them EVER will!) i feel like i have 10 foot walls surrounding my heart, my pain. and i refuse to let anyone in fully. i can give snippets into my pain and life, but the darkest parts i save for myself alone. It is so hard not to get upset when i hear the dearest of friends or strangers say things like "gosh today was so horrible, my kids were fighting, on and on and on..." cus REALLY?! you wanna hear about a HORRIBLE day?! i could sit you down and make you SPIN in the heaviness of each day in our lives. And i know all families with CF can do the same as well. and whats more, all those cliche sayings i used to hear all the time and not think twice about are my heartsong these days.

Live each day to the fullest

tomorrow is no guarentee

all that matters is family

it's the little things that mean the most

the most important things in life aren't things...

on and on. i honeslty feel a bit fortunate though to have had this epiphany. a glimpse. a fast forward to the day when Conner earns his angel wings and is no longer suffering here. as horrible as that makes me feel to even think it...i feel so blessed that my perspective has been so radically shaken and changed...i live and breathe my sons. my husband. the five of us. my real family. my heart. my life.

someone show me the way to the OR, I'd lay my life down this SECOND to save my sons life...give him my lungs so he can take ONE breath w/o lungs clogged with mucus and inflamation and infection.

but...i know i can't. i know he can't. so i will keep my brave mommy face on today and into tomorrow and we'll see what kind of fun we can have!!! cus thats what mommies do... ;)

just another day in paradise...