Today is go home day for us....and we are very excited to do so. Over this past 8 days here we've met with each CF doc individually, both social workers, the nurse coordinator, child life, the chaplain and The Bridges hospice team. We feel secure in our right now plan, I'll call it. We'll continue the IVs for a week, bring him back to clinic and then decide then what the next step will be, and so on. I don't feel we're ready to make big, concrete hospice verses hospital decisions and I feel relieved to have finally realized that we don't need to yet. That nobody expects us to. That its perfectly ok to live in each day and when things progress, just go with the flow. I like that. So we'll meet the local hospice team and see what they're all about, and keep it in our mind, I crave flexibility. I don't feel comfortable yet saying home verses hospital. We're very connected to each one, for many different reasons. But I need to know it's ok to just have these conversations and over the next few weeks or hopefully months and MONTHS we'll just make each small decision as it becomes necessary...and it wont be as daunting as making one large decision right away. The Doernbecher CF team is extraordinary. They are compassionate. They are very loving and loyal. and most of all, they are heart broken over this as well. They are extended family by every sense of the word and to just walk away from them and not have them help see us thru every aspect of CF, the dyeing as well, is just unimaginable to me. You'd never probably understand that connection unless you've walked in it, which unfortunately many of you have, and I pray that more of you don't ever. But having intense doctors help and intervention since i was 18 weeks pregnant with Conner man and now 7 years later to just walk away from it all, is beyond my capabilities. They've been our miracle. These doctors saw me thru my pregnancy, they helped drain his little bladder when he was in my tummy struggeling desperately for life, they've seen him since he was brand new in the nicu and thru 26 different admits, thru his 105 degree fevers from the Zosyn, thru his rushed make a wish, and I simply can't live without them. and i'm so glad we don't have to.
So yes we are going home today from the hospital...not because he's well, but to just keep living each day and enjoy it and find the quality in each second until there is no more. and I think it's kinda wierdly beautiful. So he'll do another week of IV's then go to clinic and decide the next week and so on. and for now, that is the most perfect plan I can imagine. get out of here, and live our lives, fill his remaining time with experiences....fulfill his every wish and condense 60 years of living into whatever time remains. Such beauty i think. I think we'll all be better for it. Facing death forces you to live in the now and do each thing you can't make it thru your life without doing. and I'm excited to see where all we go...I do know though, that first stop is a visit and meeting with his best pal Grover here in Portland within the next week...Sesame is in town for some shows and Grover can't wait to meet Conner man. And from there...let the experiences roll..........
Love
Sarah
Monday, April 26, 2010
Thursday, April 22, 2010
He's not just anyone, he's MY SON...
i've poured my heart and soul into this and I pray you can pour your heart and soul into whatever resources you have to help us fight CF and help CF families...
blessings to you....and feel free to post on....
blessings to you....and feel free to post on....
Tuesday, April 20, 2010
Hospice meetings today...
Today, well the past few days have been long, exhausting days. Honestly, I can't believe that I'm still awake right now but I am...trying to catch up on emails..but alas, I've given up for the night, with 78o still unread. wow. and I have to say all those pictures of your CF warriors are simply warming my heart, you have NO IDEA how humbeled I am that you all have responded and have put your trust in me in creating this. I have barely begun and already it brings me to tears. I think it's going to be very powerful indeed. And as soon as I get it all together, I will post it on here and my facebook so you all can have it for yourselves as well...simply a moving tribute to our little angels...
My husband and I met up with the Bridges organization here at the hospital, and they are phenomonal. It's an amazing team who pulls together all kinds of resources and hospice transistioning together. We learned alot today. And the thing I learned the most I believe is I simply can't believe others have gone thru this. My heart breaks for each and every person sending a loved one into hospice or even considering it. Over and over in my mind I kept thinking I wish this was easier, I wish it wasn't such a huge question mark you know? So many tiny details that I never would've thought of. Yet it wasn't overwhelming with information, it was very compassionate and very supportive discussions. I realized today just how much I'm attached to our CF team here. They are family to me. I've been working hand and hand with them constantly over the last seven years and the thought of saying goodbye to them and handing our sons care over to an unknown totally frightens me. So I think I can safely say that we're not going to. The bridges team is going to call our local peds hospice team and do some footwork for us, about what is considered extreme measures verses comfort measures to them, and to just get us information about them so we can decide if we even chose to meet with them. We dont have alot of time to waste on a ton of meetings, lifes too precious for that. So I appreciate all the bridges team will be working thru on our behalfs. They've been able to custom tailer hospice care before to fit a families needs to stay contacted with the CF team and also have hospice at home...and at anytime could still receive care at a hospital if something acute happened. It's all such a buraucracy, and insurance I'm sure makes you jump thru hoops, but I think we'll know what's best for us and for Conner before long.
We also discussed in depth with a child psychologist Conners developmental understandings of death and dyeing, and he gave me a book and some papers to read that will help us to know what hes thinking, feeling and ready to hear, which will be a huge relief. that is my biggest concern. saying too much and it scaring him, or not saying enough and having him feel like he's doing something to let me down. a very fine balance. and as i said before its all so very complex and i wish so much that it wasn't such a huge question mark for us, i wish it was easier. life though, right?
i was proud tonight of conner man, we got the bipap back in his room, he's been terrified of it and who can blame the boy? but tonight he put it on, with the power on for the very first time and left it on for 15 seconds!!!!!!!!!!!!! i was so proud of him...i think bipap could really help him sleep a more restful sleep at night and give him more energy during the day. baby steps....
it is late, and i should go to sleep, I will leave you with a great pic i got of conner tonight, his buddy got him night vision glasses for his bday last week and my hubby brought them to conner today and so he was wearing them tonight and the nurses LOVED it, not to mention he thought it was pretty cool himself...so i'll post it for your enjoyment.
thank you for the continued love and prayers...i feel them. for the most part i'm getting thru each day, and actually eating meals which i can't believe that i am able to...the only time i get "iffy" is when i sit down and discuss conners declining health, then my stomach starts to flip. but i know that because of your love and support i'm actually able to function like a human! and i owe you the world...
goodnight my newest and greatest friends....lots of love to you
Monday, April 19, 2010
Won't you help us please...
Uhg.
I've met so many wonderful cystics this past week....honestly, some of the most well wishing, loving, supportive and god loving strangers I've ever had the pleasure of meeting. I've been weeding thru my hundreds of emails from these amazing people...and I just can't help but to think of that ugly bond we all have.
Cystic Fibrosis
Hearing all of the love given to our family, to our sweet Conner, and then in the same post to be introduced to those they are fighting for. Oh that is simply overwhelming. There are hundreds of tiny souls batteling this disease...and I hear..."my so-and-so is this old with CF and I simply can't imagine what you're feeling...." oh my heart is heavy. For you.
All of you.
Each person whose reached out to me this past week with loved ones suffering silently, and even not so silently with this disease...my heart is broken for you. My tears for you are endless. Because I pray that you will never know what I'm feeling today. With all my heart I pray you will never see your 18 month old angel fighting for their life...for your 5 year olds...for your 25 year old daughter and sons waiting for transplant...oh my. The burden I feel for all of us, in this horribly close community ravaged by this monster disease...is just overwhelming to me tonight. I wish for one moment I could list out each of your angels. I'm sure many of you, follow other cystic blogs and even have many CF friends on FB and other forums, and I have as well, but this past week God has opened the door up for so many hundreds of you to introduce yourself to me, to send us love and support...and at the same time he's shown me just how many lives are on their way to devestation. and that is crushing. Safety is in numbers, wouldn't you agree? just plain old numbers....leave it at 30,000 people have CF and you can turn from it, unscathed. But when in one week you've been reached out to, and introduced and been given NAMES of almost 1500 actual PEOPLE, living, breathing PEOPLE fighting this internal fight each day, that simply is overwhelming...and it's a call to action. You simply can't turn your back at that. I think what Im' feeling now is a turning point in my life. I think we can use this for good.
This is how we should fundraise for all of our loved ones. Give CF a name...not just one name, and 29,000 other strangers...but names...people. pictures. lives. How can someone turn their back when they see faces to these countless people fighting...? How easy is it to say, "gosh ya too bad for Conner...glad it's not my child...." but how could people turn around and walk away hearing "this is 7 yr old conner whose dyeing, this is precious Ginger Blue, or the brave and witty Piper Beatty, and the remarkable Josh Mogren with CF, etc etc...see what I mean? Lets give CF a face...30,000 to be exact...
we have to do everything for a cure...
meeting all of you and learning of your loved ones has moved me so much this past week and i feel honored to be a part of your journey as you are a part of ours...
Please if you have CF, or a loved one with cf please email me a pic of them/you to connersfightagainstcf@hotmail.com and include the name, age, where you/they live and one thing they love the most to me...lets give CF 30,000 faces AND names
I've met so many wonderful cystics this past week....honestly, some of the most well wishing, loving, supportive and god loving strangers I've ever had the pleasure of meeting. I've been weeding thru my hundreds of emails from these amazing people...and I just can't help but to think of that ugly bond we all have.
Cystic Fibrosis
Hearing all of the love given to our family, to our sweet Conner, and then in the same post to be introduced to those they are fighting for. Oh that is simply overwhelming. There are hundreds of tiny souls batteling this disease...and I hear..."my so-and-so is this old with CF and I simply can't imagine what you're feeling...." oh my heart is heavy. For you.
All of you.
Each person whose reached out to me this past week with loved ones suffering silently, and even not so silently with this disease...my heart is broken for you. My tears for you are endless. Because I pray that you will never know what I'm feeling today. With all my heart I pray you will never see your 18 month old angel fighting for their life...for your 5 year olds...for your 25 year old daughter and sons waiting for transplant...oh my. The burden I feel for all of us, in this horribly close community ravaged by this monster disease...is just overwhelming to me tonight. I wish for one moment I could list out each of your angels. I'm sure many of you, follow other cystic blogs and even have many CF friends on FB and other forums, and I have as well, but this past week God has opened the door up for so many hundreds of you to introduce yourself to me, to send us love and support...and at the same time he's shown me just how many lives are on their way to devestation. and that is crushing. Safety is in numbers, wouldn't you agree? just plain old numbers....leave it at 30,000 people have CF and you can turn from it, unscathed. But when in one week you've been reached out to, and introduced and been given NAMES of almost 1500 actual PEOPLE, living, breathing PEOPLE fighting this internal fight each day, that simply is overwhelming...and it's a call to action. You simply can't turn your back at that. I think what Im' feeling now is a turning point in my life. I think we can use this for good.
This is how we should fundraise for all of our loved ones. Give CF a name...not just one name, and 29,000 other strangers...but names...people. pictures. lives. How can someone turn their back when they see faces to these countless people fighting...? How easy is it to say, "gosh ya too bad for Conner...glad it's not my child...." but how could people turn around and walk away hearing "this is 7 yr old conner whose dyeing, this is precious Ginger Blue, or the brave and witty Piper Beatty, and the remarkable Josh Mogren with CF, etc etc...see what I mean? Lets give CF a face...30,000 to be exact...
we have to do everything for a cure...
meeting all of you and learning of your loved ones has moved me so much this past week and i feel honored to be a part of your journey as you are a part of ours...
Please if you have CF, or a loved one with cf please email me a pic of them/you to connersfightagainstcf@hotmail.com and include the name, age, where you/they live and one thing they love the most to me...lets give CF 30,000 faces AND names
Sunday, April 18, 2010
God, Love, and lifes true meaning...
We have admitted Conner to the childrens hospital now. I woke up, read some of my great book which I HIGHLY recommend to those with end of life kiddos called Glorias Angels at Starbucks, attended church and then brought Conner man in to the hospital. Uhg. The smell of this place. Gets me right in the stomach. Is it bedtime yet? I'm emotionally exhausted. My mind is racing around 1,000 times a second...thinking of things I wish nobody had to think about, worrying, wondering, sadness...overwhelming sadness. I believe in God, and I fully know He's holding us so close to him that he's carrying us right now...but man...I wish that gave me peace. A sense of relief, anything...but the never ending "why's" don't go away just because you know and trust God. Kids shouldn't die, plain and simple. Parents shouldn't have to be thinking these things and filling out DNR's and shopping around for fairly priced funeral services. It's not natures order. It's the complete opposite of order. I feel very loved from my friends, family and the CF community as a whole...I really do...but I need to allow myself some honesty.
I'm pissed.
Beyond pissed.
Why in Gods name is my seven year old son dyeing...while there are so many other idiots in this world trying to kill themselves selfishly? Why is that dumbass down the street smoking, and KILLING his lungs to look cool yet MY SON is lyeing in a bed, barely breathing, because he doesn't qualify for new lungs. Why do people complain about the stupidest, small, insignificant things....I mean really?! Lets put life into perspective people. Stare at the face of your precious child, or your very closest loved one...gaze DEEPLY in their eyes...study them, feel the absolute LOVE that you have for that person...feel how you'd do ANYTHING for them...really FEEL IT. Close those eyes of yours and reopen them and now see them as desperately ill...and feel the helplessness in not being able to do one damn thing for them but watch. It's a feeling so hard to explain but allow yourself to feel it. It is horrible. And no words could ever do it justice. People stop complaining over the stupid, insignificant small shit. STOP IT. it doesn't matter. Don't allow yourself to get caught up in the unimportant parts of this world. You and I were made to love. Whole heartedly love. To have amazing relationships. To put another before yourself, well ALL others you meet above and before yourself. This isnt a dress rehearsal and it sure as hell isn't high school anymore people. We are not indestructable. We bleed. We hurt. We die. It's true and it's horrible. but yes, it's true. Accept it. But don't accept the untruths of life. Don't accept that life is about stuff. It couldn't be farther from the truth.
Life is ONLY about one thing....LOVE.
I'd do anything humanly possible for my son...but truthfully...I'd do anything humanly possible for anyones son. For anyone. I've learned more in the last horribly stressful year about life and I know for SURE that if God gave his sons life for us, that we had better start respecting that. Start living in that. Each and every single person you see every single day is someone who God knows, created and loves deeply. He would do anything for them...every single one of them. So I've learned that our job...(well I can't speak for you...)but that MY job is to do any and EVERY thing possible for anyone. anytime. always. I see someone crying and I pray for them, not much but something. Someone drops a paper, well gosh the LEAST i can do is show them love, Gods love, and pick it up for them. See this is all that matters.
Acts of service.
Acts of respect.
Acts of pure love.
I hate being stuck here in this hospital, and I'm scared to death about whats to come, MUCH sooner than I ever thought acceptable or possible...but then I look around and I'm stuck here in this huge hospital and there are hundreds of people much worse off then I am. Much. So how can I waste a day complaining about everything...
Heck, even looking at my son is a slap in my face. I have breath. You and I were made for something that cant and won't make any sense until our last breath. It doesn't make sense now. but one day it will.
I can't allow myself to get caught up in all the unimportant parts of life. It's not what life is about. I feel your love. I feel your support and your prayers. I feel it. Deeply. With every fiber of my being I feel Gods love and trust in His plan even though to me, it's so cruel. and so heartbreaking and devestating. but I know it will make sense.
In the matter of one week I've met over a thousand new people. I've recieved thousands of emails, messages, and phone calls filled with love and support. My blog went from maybe 3000 views to over 14,000 views...Conners story is being told and he's being prayed for in many MANY countries and in many states and in many different languages, people have shown up in their truest form, doing everything they possibly can to bring a smile to my dyeing sons face...showing him LOVE. If thats not Gods hand, I don't know what else is. My heart is breaking...yet at the same time it's being restored. So complicated. So confusing.
So God....
I'm pissed.
Beyond pissed.
Why in Gods name is my seven year old son dyeing...while there are so many other idiots in this world trying to kill themselves selfishly? Why is that dumbass down the street smoking, and KILLING his lungs to look cool yet MY SON is lyeing in a bed, barely breathing, because he doesn't qualify for new lungs. Why do people complain about the stupidest, small, insignificant things....I mean really?! Lets put life into perspective people. Stare at the face of your precious child, or your very closest loved one...gaze DEEPLY in their eyes...study them, feel the absolute LOVE that you have for that person...feel how you'd do ANYTHING for them...really FEEL IT. Close those eyes of yours and reopen them and now see them as desperately ill...and feel the helplessness in not being able to do one damn thing for them but watch. It's a feeling so hard to explain but allow yourself to feel it. It is horrible. And no words could ever do it justice. People stop complaining over the stupid, insignificant small shit. STOP IT. it doesn't matter. Don't allow yourself to get caught up in the unimportant parts of this world. You and I were made to love. Whole heartedly love. To have amazing relationships. To put another before yourself, well ALL others you meet above and before yourself. This isnt a dress rehearsal and it sure as hell isn't high school anymore people. We are not indestructable. We bleed. We hurt. We die. It's true and it's horrible. but yes, it's true. Accept it. But don't accept the untruths of life. Don't accept that life is about stuff. It couldn't be farther from the truth.
Life is ONLY about one thing....LOVE.
I'd do anything humanly possible for my son...but truthfully...I'd do anything humanly possible for anyones son. For anyone. I've learned more in the last horribly stressful year about life and I know for SURE that if God gave his sons life for us, that we had better start respecting that. Start living in that. Each and every single person you see every single day is someone who God knows, created and loves deeply. He would do anything for them...every single one of them. So I've learned that our job...(well I can't speak for you...)but that MY job is to do any and EVERY thing possible for anyone. anytime. always. I see someone crying and I pray for them, not much but something. Someone drops a paper, well gosh the LEAST i can do is show them love, Gods love, and pick it up for them. See this is all that matters.
Acts of service.
Acts of respect.
Acts of pure love.
I hate being stuck here in this hospital, and I'm scared to death about whats to come, MUCH sooner than I ever thought acceptable or possible...but then I look around and I'm stuck here in this huge hospital and there are hundreds of people much worse off then I am. Much. So how can I waste a day complaining about everything...
Heck, even looking at my son is a slap in my face. I have breath. You and I were made for something that cant and won't make any sense until our last breath. It doesn't make sense now. but one day it will.
I can't allow myself to get caught up in all the unimportant parts of life. It's not what life is about. I feel your love. I feel your support and your prayers. I feel it. Deeply. With every fiber of my being I feel Gods love and trust in His plan even though to me, it's so cruel. and so heartbreaking and devestating. but I know it will make sense.
In the matter of one week I've met over a thousand new people. I've recieved thousands of emails, messages, and phone calls filled with love and support. My blog went from maybe 3000 views to over 14,000 views...Conners story is being told and he's being prayed for in many MANY countries and in many states and in many different languages, people have shown up in their truest form, doing everything they possibly can to bring a smile to my dyeing sons face...showing him LOVE. If thats not Gods hand, I don't know what else is. My heart is breaking...yet at the same time it's being restored. So complicated. So confusing.
So God....
Thursday, April 15, 2010
a 7th birthday celebration
pictures speak better than any words ever could...here are a few from yesterday
father and son
honorary fire fighter of the day...and balloons in his favorite color
the firefighters brought him his birthday cake
and loves with mommy
We had our meeting with the doc today, Brad and i are filling out advanced directives and DNR forms today...and considering admitting him after his bday party this weekend and restart IV's and have meetings with hospice coordinators and social workers.
today his fever is still present. motrin seems to keep him comfortable. i am beyond exhausted at this point and am looking forward to a nap soon.
thank you all for your love and kind words and prayers. Each time I open my email I have over 500 new messages and thats about 3 times a day...so I haven't had time to go thru them all, so even though I know you don't, but please don't take it personally that I haven't gotten back to everyone. But know that I feel so much love and support...
pray.
father and son
honorary fire fighter of the day...and balloons in his favorite color
the firefighters brought him his birthday cake
and loves with mommy
We had our meeting with the doc today, Brad and i are filling out advanced directives and DNR forms today...and considering admitting him after his bday party this weekend and restart IV's and have meetings with hospice coordinators and social workers.
today his fever is still present. motrin seems to keep him comfortable. i am beyond exhausted at this point and am looking forward to a nap soon.
thank you all for your love and kind words and prayers. Each time I open my email I have over 500 new messages and thats about 3 times a day...so I haven't had time to go thru them all, so even though I know you don't, but please don't take it personally that I haven't gotten back to everyone. But know that I feel so much love and support...
pray.
Tuesday, April 13, 2010
No time like the PRESENT
what a day.
a day full of love. thank you to Ronnie for posting our story out there, the outpouring of love and support from the CF community has truly kept my head up a little higher than i could have thought it could be under these circumstances. my head is spinning. my phone is ringing. i hear the doctors voice in my head over and over again. "it's time sarah...it's time" "i need to discuss with you what the end of life with cf entails, you have many decisions to make...." i just can't believe it's all real. i mean, can it be? how can it be? my son is sitting up, talking, sometimes laughing...when his fevers are broke he looks alright, not great, but alright....but definately not like he's dyeing. but hey what does dyeing look like? you see these pictures in movies of people dyeing and it's so unrealistic that maybe he is truly dyeing right now in front of my eyes but i can't see it. i've got mommy goggles on. i don't want to see it. i don't know what i'm supposed to be seeing or looking for. i just don't know. don't know anything anymore.
can he really be dyeing? someone pinch me. i've been crying so much, but then all of a sudden i'll look at him and think..."no...he's not dyeing. he's not leaving me...." it just can't be. he's my child. my firstborn son. my life. my love. my every breaths fight. one of my main reasons for existance. i know he's only on loan to me from God...and I count each day as a blessing...but how can this all be happening so fast? why wasn't there any warning to it....? maybe there was and nobody told me. maybe i didn't wanna fully see it. i don't know. had i known that he was only gonna be here with me for seven short years i wouldve made them better. i wouldve been better. i would've done more for him. more smiles, more family memories...but now...it's all moving so swiftly in the other direction that all i have are the undones and the what ifs. theres not more time for the shoulda and wouldas...and thats devestating.
hug your kids for me. love them. not just say you love them but truly love THEM. each and every moment. Life changes in the BLINK of an eye. Gods plans are not our own. And now I'm just wondering where things are going and when...and how much more time I have to make the best of the situation that I can. thats no way to live. Live each day to the fullest, how cliche but DO IT. kiss. love. hug. hug some more. cry. scream. dance. laugh. play. make messes. have arguments. have pillow fights. make the most of every single moment.
time here is so short and so precious. and i know he's not gone and is still with me, but with the prospect of losing him hanging over my head all i can think about is the what ifs. the i wish i could haves...the regrets. theres nothing more helpless then that.
bless you for your love and your support. you keep me going. the cf community is the most amazing and the most heartbreaking community i've ever been a part of. the group i wish i was never a part of....but because I am, I'm so thankful for each and every one of you. my family. my friends. my fellow sufferers. I pray for a cure. such a miracle that would be.
But for now, my eyes are heavy. there are no more tears to cry for tonight. we've spent the day in the sun with our family and with the grandparents, and conner laughed and smiled and struggled and all of it was just beautiful. i had the clinic call in a strong oral antibiotic so that he can enjoy his bday tomorrow (wednesday) and maybe be home for his bday party this saturday. that is my prayer. brad and i are meeting with the team on thursday am to discuss home vs hospital hospice and advanced directives and intubation, etc etc. until then we're just going thru the motions. i'm ready for bed. i pray i wake up tomorrow and this is all just one horrible nightmare.
i wish...i wish...
a day full of love. thank you to Ronnie for posting our story out there, the outpouring of love and support from the CF community has truly kept my head up a little higher than i could have thought it could be under these circumstances. my head is spinning. my phone is ringing. i hear the doctors voice in my head over and over again. "it's time sarah...it's time" "i need to discuss with you what the end of life with cf entails, you have many decisions to make...." i just can't believe it's all real. i mean, can it be? how can it be? my son is sitting up, talking, sometimes laughing...when his fevers are broke he looks alright, not great, but alright....but definately not like he's dyeing. but hey what does dyeing look like? you see these pictures in movies of people dyeing and it's so unrealistic that maybe he is truly dyeing right now in front of my eyes but i can't see it. i've got mommy goggles on. i don't want to see it. i don't know what i'm supposed to be seeing or looking for. i just don't know. don't know anything anymore.
can he really be dyeing? someone pinch me. i've been crying so much, but then all of a sudden i'll look at him and think..."no...he's not dyeing. he's not leaving me...." it just can't be. he's my child. my firstborn son. my life. my love. my every breaths fight. one of my main reasons for existance. i know he's only on loan to me from God...and I count each day as a blessing...but how can this all be happening so fast? why wasn't there any warning to it....? maybe there was and nobody told me. maybe i didn't wanna fully see it. i don't know. had i known that he was only gonna be here with me for seven short years i wouldve made them better. i wouldve been better. i would've done more for him. more smiles, more family memories...but now...it's all moving so swiftly in the other direction that all i have are the undones and the what ifs. theres not more time for the shoulda and wouldas...and thats devestating.
hug your kids for me. love them. not just say you love them but truly love THEM. each and every moment. Life changes in the BLINK of an eye. Gods plans are not our own. And now I'm just wondering where things are going and when...and how much more time I have to make the best of the situation that I can. thats no way to live. Live each day to the fullest, how cliche but DO IT. kiss. love. hug. hug some more. cry. scream. dance. laugh. play. make messes. have arguments. have pillow fights. make the most of every single moment.
time here is so short and so precious. and i know he's not gone and is still with me, but with the prospect of losing him hanging over my head all i can think about is the what ifs. the i wish i could haves...the regrets. theres nothing more helpless then that.
bless you for your love and your support. you keep me going. the cf community is the most amazing and the most heartbreaking community i've ever been a part of. the group i wish i was never a part of....but because I am, I'm so thankful for each and every one of you. my family. my friends. my fellow sufferers. I pray for a cure. such a miracle that would be.
But for now, my eyes are heavy. there are no more tears to cry for tonight. we've spent the day in the sun with our family and with the grandparents, and conner laughed and smiled and struggled and all of it was just beautiful. i had the clinic call in a strong oral antibiotic so that he can enjoy his bday tomorrow (wednesday) and maybe be home for his bday party this saturday. that is my prayer. brad and i are meeting with the team on thursday am to discuss home vs hospital hospice and advanced directives and intubation, etc etc. until then we're just going thru the motions. i'm ready for bed. i pray i wake up tomorrow and this is all just one horrible nightmare.
i wish...i wish...
tomorrow marks conners 7th and final birthday.our family is gathering today, and making plans and preperations for whats next to come. Conner is getting worse and I can't stand to see him in pain. We need to decide where we'd like him to become an angel, at home or in the hospital. God bless you for helping us thru this journey. I pray we have lots more time to share the latest on whats going on with our family of 5....I'm not ready to be a family of 4.i will keep you updated as i can.in gods grace,sarah
Monday, April 12, 2010
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....
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....
Thursday, April 8, 2010
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.
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