So much change in such short amount of time!

Gosh it's been awhile. I can't remember exactly how long but long enough. Life has just been kinda flowing, trying to navigate spring break, cf clinic, iv's, meetings, fighting over cayston, tutoring, the zoo, easter, and family birthdays...(with two more to come in the next few days, but I won't say WHOSE...more on that later) In addition to all of that we got a puppy!!!! And he couldn't have arrived at a better time. Such a great thing for those batteling their health and looking for a great distraction and even a feeling of satisfaction having ONE thing they can truly control. Conner's in heaven. We bought a tiny shih poo pup that doesn't get bigger than 9 pounds, even though I would love a lab (we've always had labs) but I knew I didn't have the time or space to give a lab the home it deserves....so teeny pup works perfectly! Conner named him Grover (his favorite stuffed animal since he was 1 day old! not to mention his dear hospital buddy!) Grover has been a much needed source of unconditional joy and love our family has so desperately needed...

Conner went to clinic on Tuesday and we decided to end his IV's. We know that he doesn't do well without IV's but he needs a break...and goodness i need a break as well. So because he's still sick, and of course always will be...we put him on a two week dose of oral antibiotic and 5 days of prednisone to maybe perk up his lungs. I think the Doc wrote those scripts just to make me feel better...but oh well. I'm just glad to have a little bit of time off. We go back to clinic in two tuesdays from now. And I'm still waiting on cayston...insurance is having a hay-day denying it, but i'm hopeful that it'll arrive soon.

I've been given a few great doctors names and have been contacting them to see what more if anything can be done for Conner, and to get information about compassionate care releases etc. One doc who came highly recommended in Denver called me back the other day and gave me his personal cell phone number to call "anytime" to talk about our situation and what he might be able to help with. Now I just need to put my ducks in a row and figure out just what i want to say and then call him back! it never hurts to try...

This weekend marks the big 3-0 for me...oh joy and then this next wednesday my sweet Conner celebrates his 7th birthday....and that fills my heart with such happiness...to think i was worried if we'd even make it to here...and we almost are!!! I pray as well that this is not his last birthday, but just incase it is we're going to make it EXTRA special for him! Bring his make a wish back to life!!!! Hawaiian luau complete with a volcano cake!

Ive called his teacher today and we've made arrangements for Conner to go to school for half days each wednesday to be with his friends...and wednesdays are the fun days...two recesses, lunch, music, math and computer lab!!!! oh yes and library!!! And this coming wednesday is his first day (if he's well enough) and it couldn't be more perfect...it's his birthday!!!

So for now our lives are flowing...nicely. No drama...no iv's...yes on orals but sheesh that's easy-peesy! and hopefully we'll stay out of the hospital for a long time.

I hate cystic fibrosis more than spiders!

My 4 year old Hunter woke my husband up the other morning, dangeling a HUGE spider in his face. uh ya GOOD MORNING!!! Luckily it was dead...oh lord I would've needed to be rushed to the ER with severe panic attacks!!! Oooh how I hate spiders...but not as much as cf. they're both poison for sure, but at least we can just kill a spider or put it outdoors...theres no rest in cf. each day getting up, lining up the meds, having no idea how your child is going to feel that day, treat, therapy, sanitize, repeat...it is endless...
This was a clinic week for C-man and it was a very different day for me, for sure. I woke up a bit frazzeled...I've been trying to get Cayston for C since our last admit a few weeks ago...and nothing has come from it and Conner just ended IV's on Friday and here it was Tuesday and he was not one bit better. tied to his oxygen tank...so the day didn't start with much hope. But arriving at clinic was all different, normal routines, normal faces weren't there, or were different...everything seemed to be off a bit and lord knows i'd know we're there so often! :) The RN asked how conner was, and i told him no better...and thus the downward spiral began...Conner was on 2L of o2 and they started checking his sats, and asking the normal questions...but the tone of their voices were different. not in any way in particular, just subtly different.
Doc came in and listened to him and watched him breathe and said he'd need more IV's of course and asked if we wanted to stay or not...ha ha...funny one doc! we chose to go home of course...and just before he was ready to get up I remebered Cayston...I told him I wanted a script for it for Conner, and once again got the runaround. now keep in mind i've been getting the run around since the day it came out fda approved. The doc said they hadn't really discussed which patients would get it, and who wouldn't, etc...and then he looked at me and said "it's not a cure, nor is it a miracle drug sarah" bam...there it is....they think i don't know what i'm talking about apparently!!! Which is crazy because they know me...they personally asked me to be on their CF family council, to speak a lecture to med students about cf, knew i was constantly researching..and yet what the heck is that supposed to mean? i told him obviously i knew it wasn't a cure...or else i would've been up their ass even faster (c'mon WHO WOULDN'T!?) I just felt deflated. Like because they are doctors and i'm "only a mom" that I don't know whats best for my son...or what i'm talking about. give me a break. i'm not new to this disease. i just hung my head and said "well until there is that miracle drug i'd like to try cayston for my son because we've tried things that arent even in the hospitals drug formulary...and they didn't work...so i'm sure Cayston, being fda approved shouldn't be hard to get!" the tone of his voice was just kinda defeated. and agreed. it sounded almost like they've already written conner off, knowing he's dyeing, but giving up on him. doc left the room to get IV's dosed out for home health to deliver and i was just fighting back tears.
i wanted cayston for my son. but not in that manner. he wrote the script already feeling like it would do nothing for my son. it may not. i absolutely know that. but how hard is it to try? can't hurt anything to try! when we left clinic doc said "ok good luck" with this voice like he had little faith it would be ok.
that was the final straw for me.
barely made it to the car before i started crying. not just a tear or two...sobbing. i didn't care that Conner saw me upset. He asked what was wrong....and I simply said...I hate that your sick and mommy can't make you all better...and i just cried. a mixture of stress, frustration, worry and exhaustion.
for the first time i thought that my son wasn't going to make it. the docs didn't believe in him...how horrible of them! their job is to heal and if not heal at least help. and how does it help to make a mother feel helpless and worthless...invalued? tuesday was just a horrible day. horrible. how dare they try to rob me of my hope. hope is all I have...don't you dare try to take it from me.
there was so many CF families that I know and love at clinic that day around the same time and it just seemed everyone had a wierd clinic visit. there are so many cfers i know right now barely hanging on...to health, to hope, to patience, to trust...it's just been horrible with those i know with cf lately. So many waiting for lungs, waiting for cayston, waiting for docs to call them back with a plan while watching their kid suffer in pain...waiting. each waiting for their miracle.
so yes...i've decided that i hate cf with a passion...and tuesday was horrible...i just can't shake that negativity..still even 2 full days later. i know docs aren't God...I know they're frustrated as well that they can't help more...but lord don't take my hope away...thats all i have left...and i cant get out of bed without it...

CF clinic was this morning, and we were not admitted. Conner's still sick and so doc put him back on IV's again. i guess at least he got a few days off right? So the rn will be over tomorrow to reacccess his port and get the iv's going, and he's also doing an extra oral antibiotic three times a day and i believe they FINALLY called in a prescription for the Cayston therapy. What a hassle that has been. Guess I'll believe it when it shows up at my door.
Today's one of those wierd days. Had a lot of CF family friends at clinic today and it seemed like everyone I saw had an off day. Full moon maybe? It's very hard to stay positive all the time, and I'm trying my hardest to, but it's a constant fight when you feel so helpless.
But it's a beautiful day/evening and I'll doodle around a bit and get to bed early and maybe it'll help me to be refreshed and ready for tomorrow. Because as we all know tomorrows a new day, and the next opportunity for a miracle...
and Lord if your listening...I'm still waiting on ours...

Today's not so pleasant "Census"

**Warning...today is a HIGHLY emotional day for me so please note that I in no way am trying to hurt anyones feelings and also note that i HATE cursing..but today...well shits hit the fan**

Todays mail.
Inside was the usual stack of bills that I have been waiting for, a few cards for C-man (he gets quite a bit each month THANK YOU!), and the National census report. No biggy. I grab it all, take it inside and pay my bills online and grab that large white envelope that is oh so official looking. It really got me thinking. Census' are only taken once every decade I believe, I'm guessing because I've never had to fill one out before and I'm almost 30...and it's quite an easy form to fill out. Fill out names, check off a couple yes/no's and stick it back in the mail. There. Done. Your family's all accounted for.
except...
The horrible truth flashed before my eyes, this will more than likely be the ONLY census that my sweet Conner will be alive and accounted for. and thus my day's turned into shit. He also woke me up this morning by his breathing which was labored and fast and he told me that he felt hot. I take his temp and it's 103.5 so of course the only thing on my mind is how fragile he is. I call the cf docs and plead with them to not admit us, that we have o2 and sat monitors etc at home and IV's etc and I beg for them to give me until Friday unless things change for the worse before then to see if he can kick this viral crap or not before going back in. We discuss Cayston therapy. He agrees it'd be an additive therapy for Conner. The Rn also warns me that the oncall doc might not be comfortable with my wish to keep Conner home because he is so fragile. I hate hearing that. Look I know in my mind all of these health concerns but when i HEAR them from the doc or the RN it infuriates me to no end.
i foremost want to do whats best for my child. for his health. i tell the RN that what in the world is different from doing the treatment at our home vs a hospital and he agrees the therapy wouldn't be any different but that the doc wants to keep a very close eye on my son. it's all quality of life for me. i just wish for a moment that we could catch a break. that conner could catch a tiny break. just a small one. how much would it be to ask for simply one month w/o being admitted into the hospital. it's a slap in the face. he should be on a transplant list, but he's not a candidate and in that respect i feel it'd do more harm then good for him. so i just don't know what to feel anymore. i fight and i fight and i fight. but i'm getting nowhere.
nowhere.
the rn of course re-iterated that our only option is antibiotics. i told him why in the world could that help if it's viral. he said that the antibiotics will help his lungs from being overly attacked with the bacteria inflaming them from whatever this viral thing is. and that if we do nothing, meaning no antibiotics, the bacteria in his lungs WILL overtake him, leaving us with nothing left to do but say goodbye.
i often feel that i'm such a pessamist. i follow Ronnies, Pipers, CG's and all sorts of other uplifting, truthful but positive blogs about CF....then I read my own. I feel just so horrible that i can never manage to write ONE positive thing on my blog. not one. but i'm just not there. conners not there. we haven't been there in years. but still to me it's devestating. i feel i sound like i've already given up. but i haven't. and i won't. but our happy days are so few and far between anymore that i just feel i'm a constant downer.
and in that respect i've given up.
i've given up my happiness to this monster.
friends wanna talk about it, or get my mind off things but it just isn't enough. it only is temporary. i'm so sick of this shit that i wish i could just fall asleep and sleep for two weeks i'm so exhasted from it all. i don't know how i get out of bed each morning. i know WHY i do, but i don't know HOW. i wish i could feel more positive and hopeful. but i don't. i can't force myself to either. and i hate it.
because i'm not a negative person.
cf's destroying every aspect of our world it seems. and as hard as we fight to not let it, it seems to always win. always.
i'm sorry it's all so negative. i laugh when people tell me they find strength or inspiration in my words because i don't see how they can. because i don't really. i feel like the biggest pessamist i know. and THAT is not who i am.
so i'll just stick that lovely us census in the mail tomorrow damn well knowing that the next one i fill out will be the proof that cf has yet again won, and try not to cry. or to dwell on it. but today is just too much for me to bear.
just too much.

Todays random thoughts of dislike...

Another day, another admit. We've been here 24 hours now...and I'm already pining to go home. I really hate this place. hate the smell. hate the hand sanitizer. hate the cold shower. hate the food. hate the "contact precautions" that we're on that isolate us even farther. hate all the disruptions. hate having no real privacy....on and on and on. BUT....
I love this place. I love the nurses. I love the doctors. I love the volunteers. I love the hospital school teachers. I love the child life specialists whose job is to come and play with the kids, (the BEST JOB EVER!) i love the pharmacist who mixes my sons IV's. I adore the many pumps which allow my son to recieve both IV antibiotics, IV lipids and nightly tube feeds all simultaneously. I love the quiet that sometimes accompanies the late night, long after shift change and daily visitors...when all the docs and even most interns and residents are gone from the floor....ooooh so love hate.
but more than anything...i hate the two words i heard today. hate would be a gross understatement. i've heard these words many times in my lifetime, in various contexts and i've read them in books, and in research journals and all sorts of places. And come to think of it I have heard many synonyms of these two words many, MANY times the past few months now that I think of it, but none of those other terms holds a candle to the two words i heard today. the most painful phrase a mother could ever hear. the most horrid two words possible.
RESPIRATORY FAILURE
Try that on for size. Let it fully sink in. I really cannot think of a more powerful two words together than that. My greatest fear, a mothers worst nightmare. Lets put it into the proper context though...when those 2 words were spoken today, they were not meant in a dire context, as in my son is in respiratory failure and is in immidiate peril. It was simply said in reference to the ongoing lung distruction that is occuring each and every second in my sons lungs. Not much of a difference, but hey I'll take all the difference I'm granted between those two distinctions. We are being cared for by a new doctor, who recently joined our CF team from John Hopkins University hospital in Maryland. I have never met him before last night. He has never met me or my son as well. I don't know his manerisms and he doesn't know the way I process information given to me. So I think I'll let this one slide. Maybe he doesn't realize that's a phrase that is not to be said lightly. it is grave. it is painful. my whole lifes greatest fear. I can't even recall the sentence he used it in...something along the lines of "going over Conners chart and his labs and xrays from last night...blah blah blah....such and such goes along with his respiratory failure...yadda yadda" hhhmmm....ok maybe i'm kinda new to this whole prognostic side of CF or chronic disease in general...but bed-side manner side of me speaking here thinks...ok well thats probably a phrase best only to be used in the most dire and extreme circumstances. am i wrong here? so now of course naturally i forgotten everything else we discussed....except that I asked dr m to get Conner on the new Cayston therapy...and he agreed he'd try to get that for him asap. so ok..one small victory for today...
so I bought the book "Beyond Breathing" by Margarete Casselina, mother to Jena C who died from respiratory failure and cardiac arrest when she was 13 from CF. I read lots about how inspirational it was, and have heard numerous good recomendations about this book to me. So yep, i bought it and first I was SHOCKED by how thin the book is. Only 133 pages. thats it?! sum up your everlasting pain, your childhood, your daughters 13 years and your grief after her passing in 133 pages? and thats including 3 pages of a glossary in the end...hhhmmm...But I read it. I'm very curious if any of you have read it and what you thought of it, because I don't know if it's just me, or if it's because our situation is heading in that direction more swiftly then any of us had ever thought before...but I just kinda didn't get it. I can see it I guess being inspirational from many perspectives, people with CF, those without it, those who've never heard of it, and maybe even some parents of cf'ers. But not me. and maybe it's just me. because of all the raving reviews i heard of it. so it must be just me. clearly she is in pain, that is absolutely for sure and i can genuinely feel some of that pain alongside of her. but i feel there's just so much more she left out of it. it kinda jumps from place to place, one paragraph your here and the very next paragraph you're all the way over there...it was kind of hard for me to follow. but it was absolutely evident she is grieving. She is suffering thru a circumstance no mother should ever have to endure, she's still fighting, and she still absolutely loves her Jena. You know what I think it is? Everyones journey with cf is so completely unique, how CF manifests in them, just as each and every life is preciously unique. So naturally there must be a very unique distinction from ones grieving a loss of a child to another. maybe thats it. i guess though too, i was hoping for more answers from this book. coping mechanisms. clarity. ideas. i think maybe i set this book up to fail, because i expected too much from it. so anyway...guess maybe it's just me...but i kinda don't know what all the fuss is about with this book. but i think i wanted much more from it that she just couldn't deliver for me. that nobody really can deliver for me i guess. Nevertheless I will pray for that family, for the parents who are without their baby girl, for the brother who also has CF, who lost his only sibling, and even for Jena...that she is finally able to breathe.
My husband is on his way up here right now...he's staying the night with Conner man so I can go home and be with my other 2 babies, and for that I'm so extremely greatful. Lots to get done there, bills, cleaning, appts and don't forget lots of loving on my babies...AND a comfortable nights rest in my own bed...
so on that note I will end this lovely little negative blog post for today. And if you take anything away from this post, please let it be to NOT say respiratory failure...UNLESS it absolutely NEEDS to be said...kapeesh? ok...then...
night!