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...