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.

cry much?

so my therapist told me tonight that i don't cry enough. that i am not modeling for my children that emotions are ok and how to deal with them. so here's the thing....
i cry.
but on my own terms.
i happen to think that just because i'm not a blabbering mess all the time that it shouldn't mean that i dont cry. i do. but crying doesn't get 3 kids fed and going, or meds done, or feeds done, you know? so yes i do cry. but i feel that why waste precious time crying...and worrying about the future and conners declining health...because i could be spending that time making family memories right? you only get one shot!
but i think that just because i dont' cry to release my emotions doesn't mean i don't feel them. doesn't mean that i'm ok. doesn't mean that i'm not trying to deal with it all. it just means it's not me right now.
maybe i'll get there.
maybe i won't.
docs worried that if i dont allow myself to feel this grief right now, that if i keep pushing it to the side to get thru the day, that when that horrible time comes she's very afraid of what my reaction may be.
i can see that. makes sense.
but i guess for me...ya i know where we're heading, and i'll have all the time in the world once we get there to wallow in the grief of it all...and i do have days where i'm emotional and that i cry over stupid stuff and that i'm too stressed to see straight...but i don't wanna dwell in it. thats not who i am...
just cus i don't cry doesn't mean i have it all together...
but it also doesn't mean that i have a handle on it as well...
it simply means it's me.

Chefs Dinner for CF a HUGE success! $120,000 raised in 3 hours!

A truly amazing night...we raised over $120,000 for vital CF research for our miracle CURE! It was amazing. Former Portland Trailblazer Jerome Kersey and Stephanie Stricklen from Portlands KGW news Emcee'd the event and it was spectacular. The food was extroidinary, the wine pairings were so good (Brad told me as I'm not a whinno!) and the people we met had amazing stories of hope and despair because of what cystic fibrosis has done in their own lives. I was so honored to be there. As promised...I will post my speech, which was amazing because I never did get nervous, and when i was done there was not a dry eye in the room, even Jerome Kersey was crying and HE shook MY hand to say thank you...WOW...a night I will never forget! So here goes...

I stand before you tonight so very humbled to have been asked to be here and I feel to do our sons fight the justice it deserves that I need to be as honest as I can be. Ours is a CF story I wish you never had to hear. I wish it were simply a horrible lie, but it is our reality and sadly, the reality of so many others fighting this monster we call Cystic Fibrosis.

My husband Brad and I have a beautiful 6 year old son named Conner. He is our first born son, our miracle, the one who changed our priorities, made us less selfish and the one who showed us what unconditional love was. Our reason for living. Every tiny milestone he met, we celebrated as first time parents do. We didn’t know he had CF, to us, Conner was the easiest, most loving, perfect child we could have ever dreamt of having. Until that horrific day when CF showed up and made its presence and mission very clear by taking my son’s breath away. At 11 months old Conner stopped breathing and my husband had to do CPR to save his life. We realized in that instant that CF was not a disease to take lightly, and it’s been a part of every second of every one of our days since then, a very unwelcome addition to our family.

Fast forward a few years; he’s in the first grade now and is such a boy! He loves to be outside playing, being with his friends, he adores his weekly campout every Friday night with his dad and brothers, he loves transformers and star wars, football Sunday’s, snuggle time with mommy, riding bikes, camping, school, video games all things most 6 year old boys enjoy. His smile is simply magical. He’s at that awkward stage where about every other tooth is missing and some are big and some are small, yet it’s still the most adorable smile I’ve ever seen. It suits his personality perfectly.

He is a very determined kid. He is the bravest boy I’ve ever met. His entire life has been one hospital stay to the next. By his 3rd bday we realized we needed to move from the LB peninsula to be closer to Doernbecher, because of his frequent hospitalizations. Conner is considered a frequent flier at the hospital because in his 6 short years he’s been admitted 21 times because of CF. His life is filled with PICC lines, IV’s, EKG’s, medications, Lung function tests, x-rays, blood draws, blood sugar checks, sputum cultures, breathing treatments, tube feedings, chest physiotherapy, ultrasounds, bronchoscopies, swallow studies, 2 different ports for IV’s, g-tubes, scoliosis tests, Doernbecher Children’s Hospital and Shriner's as well…

His list of daily medication is like picking up prescriptions for your grandparents. Over 15 different medications he takes every single day costing over $8000 a month and taking over 3 hours a day to administer. Reflux meds, oral and inhaled antibiotics, enzymes to help him digest food, vitamins his body is deficient in, mucus thinners, bronchodilators and probiotics. By days end he has done 24 doses of medicine. Those are simply the preventative medicines, when he has an active lung infection add to that list a few powerful oral antibiotics or even a hospital admit for IV antibiotics and the cost and time spent on treatments goes up significantly.

In addition to the 3 hours he spends doing meds and breathing treatments, Conner must also do chest physiotherapy to loosen the mucus from his lungs each day. He alternates between doing his VEST machine and a PEP device for airway clearance. PEP takes about 15 minutes to do each time which is 4 times a day and VEST therapy takes 30 minutes twice a day. Both therapies help him to clear the thick mucus from building up in his lungs causing infection and inflammation.

CF also makes digestion and weight gain nearly impossible for Conner. He fights for every single ounce he gains. You can count his ribs, and fit his thighs in the center of your encircled hand. He has almost completely stopped eating now, because it is too hard for him to breathe and eat simultaneously. So he has a G-tube, where he receives a very high calorie, broken down easy to absorb formula and also straight fat in it 3 times a day, directly into his stomach. And he receives even more formula overnight as he dreams. Even in his sleep Conner can’t escape the realities of this disease.

He requires oxygen quite frequently each day so we have an oxygen concentrator as well as portable tanks thru out our home. Every single breath he takes is a struggle. He can no longer say full sentences without stopping to gasp for air. He has a bi-pap machine that we’re working with him on, that will help his lungs rest at night while he sleeps. Because the simple job of breathing that you and I take for granted has taken its toll on his tired, overworked lungs. They need a break or they’re going to give up.

All of this, you can imagine makes it very difficult for Conner to just be 6. CF surrounds his days and has made our family change the way we live our lives. Its affected us greatly. We had to move. We can’t plan vacations because his health is so unreliable. Our home has become the battlefield against the war we wage against CF with medical equipment scattered all over our house. We had to get him a handicapped parking tag because he can’t walk far distances any longer. He no longer goes to school with his friends because the risk of catching a virus has become too great, so he gets home tutoring by a teacher. I have to screen every single person that comes to our home for illness because if Conner gets even a cold, he’ll wind up back in the hospital.

This past year has been Conner’s worst year yet. We’ve seen first-hand how quickly CF can cause a person’s health to deteriorate when it attacks full force. Conner was admitted to the hospital 9 times last year alone, and between those admits, he also did home antibiotics a number of times as well. He spent most of last year fighting for his life. Or more accurately, we’ve spent the past year not trying to save his life, but to postpone his death.CF has taken residence in his life in a very detrimental way, shaking our family to its core, desperate for a miracle. We’ve been told that “there’s nothing more they can do for our son”. So we know where we’re heading, but we have no idea when and how, or if he will suffer. This pain that I feel fuels me even more to continue our fight, not only for our son, but for every other parent of a CF child, that they may never know this horrendous and indescribable pain that we are feeling every second of everyday now. Because this disease doesn’t just affect the 30,000 people who test positive for it, it affects their families, their friends, their loved ones…this disease effects hundreds of thousands of people.

I have complete faith that a cure will be found. I realize the chances of it happening in time for our son are slim, but I am so encouraged for the youngest of souls battling this disease. I am so hopeful that many of the CF families here tonight will see their children grow old and see their dreams of a cure happen in time for their loved ones. We must find that cure. There is simply no alternative.

You and I are in this fight together, yet our battles are not the same. I’m a mother, fighting desperately to keep my son alive. And you are a group of amazing people, financially trying to SAVE lives. One battle simply cannot be won w/o the other. We as CF parents have no chance to save our children’s lives w/o researchers dedicated to finding a cure. And researchers can’t search for that miracle cure without financial support. We need you more than you will ever fully realize.

After all, doesn’t my family deserve to be able to see Conner’s gap toothed smile fill in with teeth? Shouldn’t he be able to breathe in deep breaths of air effortlessly like you and I? Isn’t it cruel that so many lives have already been lost? It is just not acceptable to see our son cry in pain because his lungs hurt when he breathes…and it’s not normal for parents to be thinking about having to bury their young child. Parents aren’t supposed to outlive their children. It’s not ok that those in their 20’s with CF are considered the “old timers” of this disease. It shouldn’t be acceptable that instead of enjoying life fresh out of college that many of these young adults are going thru the emotional and physical struggles of being put on the transplant list for new lungs. They are still babies. This disease is lethal. It does not overlook even the people with “mild” cf. it finds ways to make their lives more difficult to live as well. It takes no prisoners, only lives. And that simply can’t be tolerated.

Thank you so much for partnering with us to stand up to this disease and stop it dead in its tracks. You are our hero’s. Your donations show those with CF that their lives are so much more than a clinical statistic, but that their lives are worth just as much as yours and mine. Your money funds clinical trials, creates new therapies, extends people’s lives, and gives our families more precious time to simply live, to love and to breathe. Thank you for giving us more time to fight for our sweet Conner, because we’re not ready to give up and we’re certainly not done loving him yet.

CHEF'S DINNER IS HERE!!!!!!

Just a quick note because today is so hectic...and life has been as well with 3 sick kiddos and being sick myself...anywho! Tonight is the BIG Chefs Dinner & Wine Extroidinarre for Cystic Fibrosis that I'm speaking at! I am so excited and not at ALL nervous! Send me good thoughts (especially because I will be in heels!!!) yowch!
I will post a picture or two tomorrow, and I will also post my speech!
This is the Oregon CF Chapters largest fundraiser (well it actually may be tied with the Platt Golf Tournament here) but anywho, it's BIG and black tie...and I simply can't wait!!!
Love
Sarah

Resting at home...and a new form of CPT

Well we are home. We got home yesterday (Sunday) afternoon to a house full of sickness. It was so nice to sign those lovely discharge papers from the "clink" and get outta there, but walking into our home was kinda eery. The only healthy one right now is my hubby, and I'm guessing that will be short lived as well. I have this horrible head congestion, sore throat thing thats wiping me out, Hunter, our 4 year old, is still trying to get over his crud which is pretty much what I'm now getting. Our youngest, Bradyn who is 18 months is so sick. Sounds very croupy but with a pretty good fever and a ton of congestion, he is miserable. And this is where I'm trying to get my son all better? He was sent home on 14 days of home IV's, the best schedule we've EVER had! Ceftaz IV every 8 hours, IV Tobi once a day, and oral Doxi once a day. That is easy peasy! But now I'm playing a fun game of 3 child keep away...trying to prevent Conner from catching whatever viral junk this is in our home. I heard today that another strain of the flu is out and heavy here right now...oh joy. I sure hope we don't have that. It'd be a setback that Conner simply can't afford right now.
So I'm trying to rest so I feel better because Thursday is my Chefs Dinner speach for CF. I've had it written for about a month now, but I keep going and modifying it a bit almost daily. I need to feel better for Thursday, cus I'm going to do it no matter how I sound. Gotta raise that money for the CFF.
In other interesting news I will leave you with a picture of our newest form of CPT for Conner. Not to mention that his brothers love it tons too! It really gets Conners oxygen pumping and helps him get lots of coughing and moving that mucus...I highly suggest it! the best part is it's only $200 and not $20,000 like the Vest!


Love
Sarah

Just keep breathing...

TGIF???

So once I heard of a saying like “TGIF”???? Hhhhmm…well I saw it all over Facebook today and I just thought wow…so TGIF really doesn’t apply to those trapped inside the 4 walls of a small hospital room. It’s funny how I say it like I’m the one stuck here. Really? I’m here by free will, I could walk out this door because I’m not hooked up to IV after IV, I don’t have 15 more therapies and meds to get done before midnight tonight. No respiratory therapist will be looking for me if I left…so why in the world do I feel it at all appropriate to call this my suffering? Because it’s simply not. It is not my own.

It is my sons.

He’s the one lying on that God forsaken bed, playing video game after video game, trying in desperation to numb the pain of being here, away from his brothers and his daddy. It is him. Not me. It’s him having to endure all of those medical miracles pumping thru his veins every 6-8 hours thru that implanted PORT in his chest. Not me. It’s him having to do all of these blood tests, blood troughs, blood cultures, x-rays, sputum cultures and viral panels. Not me. It is him having to drag his oxygen cord around this room like he’s a dog tethered on a leash, just so he can breathe. Not me. It is him who has to endure all of these tube and bolus feedings thru his g-tube implanted in his stomach, because he can’t find the strength or the desire to eat anymore. Not me. It is his pain. His life. The only life he’s ever known.

Funny thing, this cf disease. It is quite sneaky and devastating. And yes, it is of course progressive. Naturally. That’s the first thing you learn about this disease yet it never really sinks in fully I think. Hey Sarah define progressive…ok sure…it means to do something slowly over time, not right away. Wow Sarah, you are right! How smart. But sheesh, you must have then somehow MISSED the lesson on how it is real. How in cf it totally applies. Each day is worse than the one before. Noticeably or not. Always for the worse. Some days you may think for the better, but that’s how cf gets you. It is indeed a very sneaky disease. You may sometimes feel like you’re making great progress, that things are finally going ok. You’ve escaped those isolating, sterile hospital walls always knowing in the back of your mind that it is truly only a matter of time till the next shoe drops. There’s always another shoe. Always. You get to a point of comfort outside of these four walls. You make plans. You go about your day to day routine. Enjoy time with friends. Family. All the while knowing in the back of your mind, that at any moment it could all end again. Just like that. You start to fear making plans. You let cf kind of take over your daily planner, your summer vacation. Not intentionally of course but pretty soon it just creeps its way into your life very subtly, progressively. Not just health wise.

Progressive.

It’s really not a term that I gave much thought about until recently. It’s a word I hear all the time with that dang lady name d Flo selling auto insurance on tv, but disease-wise you also hear it. You understand its meaning. But you don’t fully let yourself comprehend it. But here almost 7 years into the fight I look back and can see without a shadow of a doubt the progressiveness of this monster. It’s horrid. It’s progressively devastated our family more and more. It’s progressively closed the lines of communication between my husband and myself from fear. It’s progressively crept its way into more and more of our days, hours and minutes. It’s progressively taken my sons health, almost unknowingly. Well more unnoticed I would say. Because generally I knew with each hospitalization growing closer and closer together that it was progressively getting worse. But never fully saw the effects of it all. The progressive disaster it’s caused Conner. Stick thin. Ribs flaring. Knees poking out. Thighs so thin I can fit my hand all the way around them with ease. Dark sunken in eyes. Pale skin. Blue tinged fingernails. Toes clubbing from lack of adequate oxygen circulation. Less talking. More breathing. Heavy breathing. Labored breathing. Sunken in neck. Rapid heart rate. Less eating. Less appetite. Less energy. Less drive. More rest. Less able to make it thru a day w/o accommodations. More riding in shopping carts or being carried everywhere. Less walking. Less. Less. Less. Always less. Progressively less.

Eating.

Seems like just yesterday he ate. A lot. Chunky cheeks. Healthy, happy smiles. I have many pictures of him up until I’d say age 4 where his face would be smothered in something. Pancake syrup, mashed potatoes with a heap of butter. Buttered noodles. Whipped cream. But as his breathing ability got progressively worse, so did his appetite. So did his ability to eat and breathe at the same time. Less. Much less. And now almost nonexistent. Can you imagine the arguments about that? How hard as his mom to not fight him to eat. He desperately needs calories. More than 4000 a day he needs just to break even. The business of breathing eats his calories right up. Always. Sitting together at the dinner table watching my 2 and a half year old younger son eat away. Eat anything. Always eating. And looking at Conner’s plate, hardly touched. Not even moved around in an attempt to pretend he’s eating. Nothing. No point. “go to bed!” “no more games!” you name it. What a struggle. The stress and the horrible helplessness as a mother knowing just how desperately he needs those calories but he’s unable. Unwilling. Eating progressively less and less. I had to stop the fight over food. It was too much stress. Unnecessary stress. Because I cannot imagine in any shape or form the feeling he must feel each day. Just to breathe. The pain. The constant pain. Always pain. Heaviness in his chest. “my breathings not good today mom!” uhg. I just can’t fully comprehend that.

The business of breathing.

The rise and fall of his chest. Progressively more rapid. More noticeable. More pronounced than before. Not even that long ago really it all changed. Damned mrsa and pseudomonas. Horrible cf bugs. The bugs keep getting worse. With worse implications. I’ve educated myself almost daily about cf, about the bacteria, all the colonization’s possible. The medicines, the therapies. The hope for a cure pipeline. I know it. But when it’s your son who cultures pseudomonas at 2 years old, knowing in your mind all the research that you’ve done on it says it usually leads to places where you don’t want to be. Knowing it’s your son now. No longer research, but real life. Then the new fight starts. So we fight cf. we fight pseudomonas. Then along came mrsa. Oh the lovely methicilin resistant staph. You just had to come along into the mix right? Maybe feeling a bit left out. Cf lungs are just like fly paper. Just so coated with the stickiest, most dehydrated mucus you can possible imagine. Then breathe in. breathe in fresh air. Full of bacteria. His lungs are a perfect breeding ground for them to grow. To thrive. To progressively take over his lungs. They find a section of it, they thrive in less oxygenated areas…PERFECT, because CF lungs have less oxygen in them than normal. PFT’s prove that. Conner’s lungs are 33 % of normal lung functions last checked months ago. Pointless now. Thick, sticky mucus that is just nearly impossible to clear. Cf tricks you into thinking that with antibiotics you can get rid of the mrsa, or even the pseudomonas. And you may. A little. But once you get it, it never fully leaves. You culture something else. But guess what? It’s still there. Just in harder to reach places, or crowded over in some random corner of your lungs. But it’s still there. Don’t let it fool you too. So disappointing. How utterly helpless. Pound on his back. Shake him up with a vest treatment. Have him blow PEP to loosen the mucus. Go ahead try. Stay ahead of it all. Because it just keeps getting progressively harder to get rid of it and progressively harder to stay ahead of it.

FIGHT.

But try. Give it your all. You only get one shot to make it right. Only one. And that starts from the moment of birth. Fight with all you got. Don’t take no for an answer. You just only get one shot to take control. One life. And it just keeps getting progressively harder to control. It gets harder to fight. To have the strength to fight. The motivation. It’s a very helpless feeling being his mother. Watching him. Praying for him. Listening to friends and acquaintances say to me how he looks good or that he looks healthy. No. it’s a lie. I’ve seen his insides. I’ve seen them. I know his lungs by heart. I know the blockages. I know why he gasps for air. I know why they have to so closely monitor his oxygen to make sure he’s still able to get out all the co2 he breaths in. normal lungs just do that. Simple. Not his. Not cf’ers once they get progressively worse. They don’t. They can’t. They stop. Helpless I tell you to not get upset at it all. To see people in the stores fighting with their children over something so small. So unimportant. So worthless. The jealousy and the anger I feel. If only they knew how lucky they were. Such a simple topic to fight over really. Not at all life or death. Imagine death. A child’s death. On your brain. Every second. Every day. Imagine that. I wish I couldn’t. I wish I could fight over something trivial. But trivial is just not important. My battles are so much larger. They are life or death battles. Kids want to fight? Ok great! At least their lungs are healthy enough to yell. Kids wanna run away from you in the store and you get all upset? Gosh…what I’d give to see Conner be able to run from me. To just be free from his chains for one moment. To run and be free. To breathe free. I fight only the important battles. The rest is just so meaningless. Absolutely a waste of time.

Lesson?

Life is all about lessons. Every single thing happens for a reason. There are no coincidences. Not one. It’s all laid out and orchestrated to be just perfect. Each and every trial you learn from it what you can and move on. I get that. I understand that completely. But death. A child’s death. What in the heavens is there to learn from that? Not one thing I can think of. It cannot possibly stand to teach me one thing except suffering. About the unfairness of it all. Not about my strength, or my sorrow, or how I loved. It’s not about that. A child is simply too young. Hasn’t seen enough yet. Hasn’t really been able to dream the largest dreams. Take it all in this world…simply can’t do that in such a short amount of time. Especially in a time that is only filled with suffering. There is just nothing there. No lesson in it at all. So why does this happen? And not just to us. To so many. SO MANY. Miscarriages, stillbirths, infant death, SIDS, immunization deaths, car accidents, drowning, disease. Why? The absolute selfishness of it all. Such a test of true character. It is a test that I’m just not sure how one would pass. How could you? When it makes no sense, and kills you right along with it. No lesson to be learned as you move progressively to the end. Always moving that way. There’s simply always a shoe left to drop. Always. It is a test that I know that one day way too soon for me, I will fail.

DENIAL

What a safe place to be. I find it as a very fuzzy, soft comforter to envelope me in, just swallow me in and take with it my worries, my fears. I love it so. Numbness. A very productive coping mechanism. It’s not the same as denial, but it is an escape just the same. I go thru fazes almost daily. Sometimes hourly. Sure the doc said it was bad…but two weeks later I’m home and not in that hospital and I forget. I get back to my numb little existence. Ok well wait a second doctor told me those same horrible things….it’s real I think. This time for sure I think they mean it. Numbness again. So easy to cope with it all. I don’t deny the truth any longer. But I choose to be numb to it. It’s what gets me out of bed each day. Helps me to put one foot in front of the other. Can you imagine? Can you? Please walk in my shoes somebody. Please tell me how I can make it thru this all in one piece? I simply don’t know how. I don’t know why I’d want to. If he no longer existed. Why should I? More than because I have more family, because naturally I’d never intentionally leave them. Physically. But emotionally. It’d be so unbearable. Fighting from the moment he was conceived. Years and years. I grew up with him. He taught me how to grow up. He showed me the real meaning of life. To find a passion, a dedication, a meaning, a purpose, honesty. Nothing would matter without him. Numbness would overcome me. But I don’t think it’d be progressive. It’d be immediate. It would mean that cf won. It would mean that I wasn’t strong enough. That I had absolutely nothing to offer cf except my firstborn child. My son. It would mean that once again, that I have failed. And it’s just not like I’m losing a game of checkers. I’d be part of that elusive, very exclusive new club that nobody wants the invite to join. The one that nobody sends back their RSVP for. Yeah me. The underground society of parents who have lost a child. Where do you go from there but down? Into numbness. I just don’t ever care to find out. So please, let’s just not.

Fortunate

Please don’t get me wrong. The fight is horrible. It is physically, mentally, emotionally, and spiritually draining. It is constant. There are no day offs. No lunch breaks. No quitting time. I punched in my timecard the day he was conceived and I will never get to punch it out until I’ve lost. And I am not complaining of the fight. I live for the fight. I love the fight. Because as long as I’m in the fight it means I get to keep my son. To lose the fight is to lose my son. So I love this fight. I’ll do anything to stay in this tedious fight.. As mind boggling as it may sound or seem I need this fight. Like nothing else. I’m so thankful for it. For my semi-fair chance against cf. One and only chance that is. And I’m living it; I’m taking it, as far as I can as much as I can for as long as I can.

Daydream.

My mind just travels, it twists and turns and takes me to places I don’t want to be. Places a parent shouldn’t be. Let’s dwell on making it to second grade. Summer break. Reading full books, losing and getting all teeth. Anything but where my mind wanders to. Funerals. Blackness. Emptiness. Despair. Suffering. Emotional death. My mind it seems is trying to get me thinking, accepting, or simply just grasping the full severity of it all. How we’ve been progressing and where we’re almost to on our path that we were for some reason meant to travel down. Somebody let me make a free right hand turn please. Stop this train. I didn’t ever want to be on it. Not me. Not my son. But I guess then whose? Why not me? If it’s gotta be somebody, better it be me. Save others from it. Just wish it was me and not my son. Just me. My mind just wanders. All the time. I’m in a constant state of daydreaming. Always it seems. Guess its part of the journey. And if it saves one other person from being on this journey, then god knows I can handle it. I will learn to. Nobody should feel this. I don’t know if it’s different than actually having the disease. I just can’t tell. It’s different for sure. He suffers. He aches. He struggles. But I ache, suffer and struggle, but all for him. And there’s nothing I can do for him. I will take this burden though. But I really know there is simply no lesson at all that you can ever learn from the death of your child. I won’t pretend there is. There just can’t be. It’s the ultimate insanity. But one day he will be free. Free to breathe. And I’ll count the days till I can be there with him. Making this earthly hell so worthwhile. So yes. Cf is a horrible, devastating and progressive disease. It is lethal. It doesn’t differentiate between taking an adult or child. But I love the fight. I’ll gladly fight till my dyeing breath for him. For all of them. For all those yet to be born with it. But I simply won’t accept that it’s for a reason. There’s never a reason that could justify a child’s unending suffering and ultimately having to die for peace. There’s just not.

just my random thoughts today...

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!

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