Terrific/Terrible Tuesday

Conner’s having problems with his breathing today. He’s been laying around all day. Now he’s finally sleeping next to me in my bed. He asked today to restart his IV’s…I’m so glad he made it a week and a day w/o them. He was able to bathe, and be free of IV’s, though he wasn’t really up and walking around at all. Still, emotionally and physically, he got to really ENJOY his days without antibiotics.

But today he says no more…

I called the docs, and either tomorrow or first thing Thursday he will have his PORT accessed with that huge push pin needle in a way that is so brave you’d be SHOCKED…and we’ll restart antibiotics to booster him up. and hopefully help him to feel a bit better for awhile.

Family came to visit from out of town today, my dad and his wife and her grandma from Hawaii, Nana. Nana hasn’t seen Conner since he was maybe 2 or 3. It was a great day for a visit. The little boys played in the pool and had a great time. and mr. conner laid on the couch inside most of the time. He was able to come out and lay on the outdoor couch in the shade for about 20 minutes. so that was nice.

Now he’s sleeping.

And I’m watching him.

closely.

And praying over him.

For peace. For no pain. For breath, deep breaths. and good rest.

I'm so lost...so alone and so scared...

Conner's again sick. CF sick. 104 fever, tied to his 02, coughing that nasty thick infamous CF cough, and feeling miserable. I called the clinic this am, and our RN is out on vacation...which I hate when he's gone, he's my trusted partner in all of this, the tie between center and conner. so i briefly told the RN filling in for Ben, that Conner was sick and when she started rambeling on and on about symptoms etc, I couldn't help but to just blurt out "just tell the docs Conner's not feeling well and they'll know EXACTLY what to do and they'll call!" well i wasn't trying to be rude. but gosh i wasn't about to go into all details with this fill in just for ben to return next week you know? so she must have paged them.
Dr. called me back fairly quickly...and I told him about Conner and since he's only on oral bactrim right now because we were supposed to be taking a break from iv's i asked what oral or iv can we restart....his response startled me.

"i think we're all in agreement at the center that it's time for a discussion about Conner with you and soon...I think we're way beyond what antibiotics to treat him with. i think it's time we discuss hospice......"

i know there was more words after that....

i just can't recall anything else after that horrible word.

So brad and i are meeting with the team this thursday (not wednesday of course cus that's conners 7th bday) so thursday am to talk the talk i guess.

my heart is torn wide open, i'm a blithering mess. bless trish for coming over to watch my kids i simply having trouble functioning...

hospice....

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.

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.

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

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

PFT's are for the "special Cystics" apparently...

So another day, another CF clinic appointment. We're on the 3 week schedule. I'd be lyeing if I said that it didn't bother me, but you know what, we're getting by...day by day we're walking thru it all. No more pft's for my sweet angel. He's too out of breath. His lungs are too sick. Kind of pointless now. I think his last pft had an FEV1 of 33% or so. So no need for lower numbers. Wish they were higher. I cringe when I see people complain about their "low" pft's and it's like an FEV1 of 90%...oh how I wish we had that number. I bet Conner had that number when he was like 2 years old. I spent alot of time the other day, pulling out old pictures of him, of all the boys, of my husband and me..just reliving family memories. And my breath was taken away from me when I saw old pictures of Conner. To me he's always been so skinny with all his digestive issues from CF...but I saw all these pictures of him from about 18 months when we got the disease on track and weight gain was quick thru about age 4...chunky cheeks, full, round face...regular colored skin...I never realized how far he's come in these past 2 years. How bad it's really gotten. I've got all his numbers down to a T in my brain but I never caught how far gone he was looking at him physically. I'm sure it's because it's been so gradual and over time, and I see him each day that I didn't notice. but it is just night and day. Unbelievable. A friend that I know whose known Conner from back when he was 4 and had those glorious round cheeks came over the other day after not seeing us in a few years and said to me "WOW Sarah...he looks so much sicker than he used to" (and it's ok for her to say that...no heads were bitten off...) I kinda laughed it off...but then I looked back to all the pictures and she's right. wow. how did we get so far gone? Which springs up a TON of mommy guilt...which I know is ridiculous but that doesn't stop it from coming into my head and torturing me....what could I have done better, differently, remember that day when we missed a treatment...what have I done? on and on and on. Ridiculous I know. But there, nevertheless. Look at how he's changed...this is him 18 months...
Beautiful full chunky cheeks and it wasnt really baby fat because before this he was a very bad case of failure to thrive. So this is him with his feeding tube getting him to where he should be...before all the wonderful PA and MRSA colonizations in his lungs... and the years have not been kind to Conner...this is how he looks today...4 years later
Maybe it's not noticable right away...it took me a few minutes to really see it all. And this really isnt' a good picture to make an example out of, because I've already did some editing adding more color to his face...so take a peek....what do you see? I'll tell you what I see. I see a very skinny face. I see very tired eyes with huge black rings under them from his lack of adequate rest and his sheer exhaustion from just breathing, I see a "V" in the bottom of his throat, his airway....you Cf'ers probably know what I'm talking about for the rest of you, that area at the bottom of your throat, but just above your collar bones in you and I isn't really prominant. It's there...but it's not really noticable. His is. Because when he breaths, he's gasping which makes that little "V" area sink in deeply with each breath signaling the need for additional oxygen supplementation...looking even more at him (but you can't see in this picture) I see just how skinny he really is. If you put your thumb and your pointer finger together to make a zero, it's pretty dang small isnt' it? Guess what, his arms are so skinny you can put your fingers like that all the way around his arms, upper and lower, and if you make it just a tad bigger, his upper thigh will fit in there too! I see his ribs from his back, right thru his skin. Like seeing a walking skeleton. He's had a feeding tube ever since diagnosis at one year old and it used to help us greatly, but now he's on a very high calorie formula that he gets 4 cans of a day (375 cals each), with 45mls of Microlipids (straight fat) with each can, and 4 Boost Plus formulas to drink each day and we STRUGGLE to keep his weight stable. He barely eats anything anymore, its a good day if he eats one thing...honestly. his body can not eat and breathe simultaneously. You think about the energy it takes you and I to breathe...it's not even noticable right....well for him, his body is working so hard just to breathe that it burns thru a ton of calories just to live. thats not even to walk or to run or anything. thats just to sit down and breathe. That is so scary. How could I not have noticed? I've been so wrapped up in the trenches of CF, making the appointments, dispensing all 15 meds 4 times a day, cleaning the nebs between each treatment, administering the bolus feeds, helping him drag his oxygen around, carrying him because he's too tired to walk, helping him in the bathroom because he's having diarrhea, going to the pharmacy to pick up all these wonderful oral antibiotics he's grown so accustomed to, talking on the phone ordering more IV supplies or formula, driving to appointments, fighting with the insurance, arranging his home tutoring, keeping at his side while he's struggeling in the hospital, cathetering him when the IV meds cause his bladder to stop working, hooking up his VEST therapy, or doing hand pounds on his back, or helping encourage him to do PEP, mixing his two inhaled meds that don't come prepared...handeling needles and glass tubes etc, and trying to just let him be a kid. and trying to raise two other children. and to find that same amount of time and attention to give to my other two kids. and to my husband. and to me. quiet time? nah... I can see just how much CF has changed me, as a person, as a wife, a mom, forever. Sometimes I think for the better. Other times I'm not too sure.
I just can't believe how far he's gone. How quickly it all has happened. I thought people with CF were supposed to live longer lives now...with all this wonderful therapies and new drugs and advancements....I was hanging on to maybe the median age of 37....and even that seemed way too young. Hell I'm not even 30 yet and I don't feel like I'm halfway done living my life...theres simply too much to do. Then I think about how much he has taught me these past 7 years. How he's blessed me. How I'm so lucky to be his mom. How I wouldn't trade all those treatments and hours each day dedicated to destroying CF for one second. How many lives he has impacted and changed in his short little fragile life. It is too hard to even fathom life without him in it. I just can't picture it. I'd be bored to tears! Raising two healthy kids would be like doing nothing. only annual well child check ups and the occasional sick visit. No more need to drive an hour to CF clinic. No more hospitilizations for weeks on end. No more home health company. No more feeding tubes and formula, and nebs, no more vest or pep...but more than that....no more grade school until my middle son gets to kindergarten...a huge part of me would be just done. isn't that crazy to even consider? what in the world would i do?
I'm fighting this fight as hard as I can, and while theres not much noticable that I'm doing, if you spent a full 24 hours with us at our house you would see our daily battle, just to make it thru one day getting to be at home w/o being in the hospital. You would see how Conner just does all these treatments most of the time with a smile on his face and no complaints. You will see how his younger brothers run around and play and Conner sits on the couch and watches and laughs because he doesn't have the energy to join them. But sometimes he does. I love when he does. He'll run around the living room and into the kitchen, laughing and screaming with his brothers at the top of his lungs, and his brothers at the top of their lungs til I'm sure someone is going to call CPS because they think somethings horribly wrong at our house....now the old sarah would've put a stop to that like 10 minutes ago...but now...i sit back and watch and smile, or most often I join them and run around and scream with them...then i get Conner his oxygen and sit with him when he needs to take a break to catch his breath. ooh how I love the sound of screaming, healthy lunged children....what a perfectly "boring" and "easy" blessing it is. Not all time consuming...yet no will to fight harder...no waiting on a foundation to find a cure...yet still fighting the fight all my life....
oh who even knows where I was going with this blog...I think I was just going to write about Conner mans CF appt today and look where we've ended up...talking about the ugly reality we're drowning in each and every day...not at ALL for pity...because I'm proud to be in this fight. But oooohhhh how I wish it didn't exist.
how i wish nobody had to suffer thru it.
how i wish beyond wish that it wasn't my son...

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!!!

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...

Another admit BITES THE DUST!

"You're going home tomorrow!"

Those are words that I never tire from hearing.

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

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

But let me put it into perspective.

HE FIGHTS EVERYDAY OF HIS LIFE!

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

And as a mom, i watch him fight.

i ache.

i suffer.

i feel soo overwhelmingly helpless.

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

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

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

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

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

only a cure...