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....
Monday, April 12, 2010
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From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
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There were less than 10,000 deceased organ donors in the US last year. (that's a ratio of 1 organ donor to every 10 transplant patients).
In the time it takes you to shower today, 1 new name is added to the US transplant waiting list.
From the time you woke up this morning to the time you wake up tomorrow morning, 18 people will die waiting for their transplant in the US.
click here to join the organ donation registry
BECOME AN ORGAN DONOR, SAVE A LIFE!
It's amazing how much gravity such a small word can have.
ReplyDeleteI can promise you that your family will be in my prayers tonight. And always.
I am so sorry. I wish I had these magic words to give you, but I don't. Please know we are here if you need anything.
ReplyDeleteHugs.
Oh Sarah. I can't imagine. All of my prayers are with you & Conner. Please, please keep us updated. Stay strong, we're all here for you.
ReplyDeleteSarah, my heart aches for you and Conner and your entire family. Please know that we are standing with you, that we are lifting you all up in prayer, and that we love you guys with all our hearts. You have such courage and strength, and despite all of that it's okay to have a meltdown every so often. During those moments, all of us (your online family and friends and those blessed enough to know you "in real life) will be right here to help you pick up the pieces.
ReplyDeleteMuch love and light your way for Conner to start feeling better soon.
Please feel free to contact me if you EVER need anything, or just to talk.
Well, that hit me like a punch in the stomach, so I can not begin to imagine how you even held on to the phone after that.
ReplyDeleteI just don't get it. How is it possible, that in 2010, after all these advances and treatments and therapies, that there can't be something. Anything. I am so angry that there isn't.
Sarah, you are constantly in my prayers. You, Conner, your husband, boys...all in my prayers. Please keep reaching out so that we can support you, at least with words. Or, don't if you need to pull away. Take care of yourself as best you can. Be gentle with you.
I sent you an e-mail, so I know you know this, but I just want to remind you that all of the attendees of our fundraiser where I shared your words are praying for you too.
I wish there were words I could say to comfort you. But know that your CF family will be here to walk with you every step of the way...I hope that takes a little of the loneliness away.
ReplyDeleteI can't imagine what your going through. We are here for you anytime you need us. You are not alone in this. Sending you lots of love and prayer
ReplyDeleteI dont know what to say sarah, im heartbroken for you. much love, prayers, and hope sent to you, connor and the rest of your family.
ReplyDeleteSarah my name is Cris Jones I am in South Texas and my heart goes out to you, Keep him close to you and cherish every minute you have good awful or heartwrinching that is it, you have your little boy the things he and you go through will in the whole of the picture will be priceless....My story is sad and so horrible but I want you to know I would have not changed it for the world...Mikie was my grandson 17 months old and he was sooo beautiful blond hair light blue colored eyes and a angel from heaven on loan for a short while from god, he got sick on Saturday and the dr. called it blueberry muffin desease and he would die, well he did die the next day, he cought mingenocacaeal meningitis the bacterial form that goes to the blood he litterly bled out I was right there with him through it all and I watched his birth and his death, It hurt so bad I will never be the same but let me asure you god gave you connor and as awful as this sickness is he is still alive and a true fighter I am sure, and with you his story will help others out there and be a beacon or a lite at the end of the tunnel. I promise you it is so bittersweet and I love what time I did get to have and of course if I could of changed places with Mikie or you son I would do it in a heart beat no thinking about it, I wish I could do that or just give you some peace if heart and mind just keep every breath he breaths, every smile he gives you and you will get through all of it..I have added him to a world wide prayer chain and god will be with you two...Love From South Texas Cris Jones
ReplyDeleteMy thoughts and prayers r w/ Conner and ur family <3<3<3 I have a 3yr. old brother w/ CF so I understand. Just remember u r not alone. I have faith one day CF will stand for Cure Found. Please add me on FB koey07@yahoo.com if u ever need anyone to talk to. Much Love & Prayers <3<3<3 Nicole
ReplyDeleteHi Sarah, my name is Kara and I have Cystic Fibrosis. I am so sorry you and your family are going through this. I have never heard of the other disease Connor has, but with having CF, I know that has to be so hard! I am praying for Connor, and will continue to do so! God Bless you and your family!
ReplyDeleteI wish I had some words that would provide a peace that passes all understanding, but I of course cannot. However, I find comfort in the fact that you have a personal relationship with someone who can. I will continue to pray for you and your family.
ReplyDeleteRonnie
As the mother of a beautiful 18 month old daughter with CF...my heart goes out to you. I may not have been through everything that you have been through but...I know, I understand. My thoughts, prayers, good wishes, positive vibes, etc. are with you and your family. Lots of love and strength from my family to yours.
ReplyDeleteI am so upset over this, my heart is aching for you. I am sure that there are no words to properly console you, but know that the entire CF family has their arms wrapped tightly around Connor, you, and your family. You are in my thoughts! ((((HUGS))))
ReplyDeleteKacie Tuck
Hi Sarah,
ReplyDeleteMy name is Amy and I have an 11 month old son with CF. I can't imagine hearing that word and my heart aches for you! Keep fighting for your son and know that above all else, God has a perfect plan for you and your family.
"Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27
Lot's of love to you and we will keep you all in our prayers!
Amy
I'm at a loss for words....just know that your CF community is here whenever you need us. We are all praying for you, Conner, and your whole family to get through this. (((((HUGS)))))
ReplyDeleteM
I will say a prayer for you and Connor...I also want to add that I think it is a bad idea to have this meeting without your trusted Ben...if he is not back until next week, can't you ask them to re-schedule? I think you need to feel like someone in the room is fighting for Connor along with you...Don't give up, don't let them give up! God Bless!
ReplyDeleteSarah, I am praying for you and for Connor and your whole family. I cannot imagine hearing that word for one of my babies! Praying God fills you with His strength and courage!
ReplyDeleteSarah, my name is Chrissy and I have CF too. I am keeping you and your family in my thoughts and prayers. Please keep us posted, and like others have posted. Take care of you.
ReplyDeleteChrissy
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ReplyDeleteHI Sarah, my name is Laura and I am the girlfriend of a CFer in Arizona. I have been reading you blog for some time now, and I am so sorry that you, Conner, and the rest of your family have to go through this. I want to let you know that I work for a nonprofit hospice in Arizona. If there is anything that I can do, or any questions that I can answer please feel free to ask. I know that hospice is such a scary thing to think about, but please know that the nurses and doctors who work in the field have only the utmost compassion. I have seen patients who are for the first times in their lives not in pain, and I have even seen so many patients who actually improve while on hospice care. My thoughts and prayers are with you.
ReplyDeleteHi, I am Gail Frazier. I am the mother of three boys like you! My middle son, who is 8 years old, was diagnosed with CF at birth. Conner is such a dear little boy. I am fighting this fight like you and I will not stop until there is a cure! Praying for you and Conner.
ReplyDeleteMy name is Jackie, a grandmother of a 4yo granddaughter with CF. My heartaches for you, your family and Conner. I only wish I had the words that would bring you comfort in this time. My prayers and thoughts are with you.
ReplyDeleteSarah, you are evidently an amazing Mom and person. I know everyone in the CF community can sympathize with you, but still can't quite understand everything you have been thru. I have 2 girls with cf, one with MRSA and one with psuedomonas. I will pray very hard for you and your family. You are amazing eventhough I am sure you don't feel it. He might be your angel here on earth, but I am sure that you are his angel. Love and Prayers, Megan
ReplyDeletePrayers coming your way! The whole CF community is standing behind you. Much love.
ReplyDeleteI got this in a text message today... "Remain faithful even when facing death, and i will give you the crown of life." Revelation 2:10...
ReplyDeleteDear God, I thank you for blessing the Jones' family and everyone else who has come to know their story with the chance to have Conner in their lives. He is such a blessing to so many. I ask that you give their family the strength to get through this difficult time they are facing. I pray that you give them peace no matter what decision they make. Please let Conner have the most amazing 7th birthday a boy could have and make lots of great memories. In Jesus name, I pray ~ AMEN.
I do wish you the very best, if there is any way I can help, please be assured that I will!
ReplyDeleteI just found your blog. What a story... I will read on to learn more of your son's story. I wish him ALL the BEST!
ReplyDeleteI just can't imagine what you must be going
ReplyDeletethrough Sarah. Please know that I am thinking of you and praying so much for you and Conner. Damn this stupid disease. I worry so much about the future, but try to hope and pray for the cure we need so desperately for our little ones. God bless little Conner.
Love,
Gail Frazier, CF mom and fighter
My Sweet Sarah ..... please know that the entire Otterson/Loucks/Thurman/Totten family has you, Brad & Conner in all of our prayers and thoughts! Stay strong my dear friend and please let us know if you should need any help with the other boys as we are there for you!
ReplyDeleteSarah,
ReplyDeleteI am searching for words of comfort – but I honestly can’t find them. Reading what you have written….it physically hurts. So many feelings – the first being fear – sadness…anger. I know that all of us will encounter the end eventually, but it’s just not fair – not at all - that your sweet baby has to deal with this…that YOU have to deal with this. Mommas are supposed to take care of every hurt, scrape, heartbreak…but this is just beyond our grasp.
My daughter has cf as does my husband. I want them both to die peacefully in their sleep…when they are in their 90’s – but I know that’s not within my control and that makes it so hard. Please know that you and your family are in my thoughts and prayers. I pray also for Connor’s doctors – that they provide the best care and make the right decisions for him.
Sarah-
ReplyDeleteI can't even imagine what that phone call was like. It hurt me just reading it. You all are always in my prayers and I just pray that the time you have as a family will be the most wonderful time so that you all have good memories. Know that I am here if you need me, and we will continue to pray.
Danielle
Praying for your family, I've been thinking of you all day...
ReplyDeleteSarah, my heart aches along with yours. I am here for you and will do anything to help. Please, let me know if I can ever help with ANYTHING!! Give Conner hugs from Mason please. We love you guys so much!!! Stay strong!! HUGS!!
ReplyDeleteSarah,
ReplyDeleteFrom a mom who lost a beautiful 14 month old on Thanksgiving from CF...my heart aches for you. May God Bless you as you and Conner fight this nasty disease!
Jana from Ohio
~In memory of Baby Xander~ http://www.xander-lowe.last-memories.com
Oh my goodness... words just are not adequate to express what I am feeling after reading all of this. My prayers are with you all. God Bless...
ReplyDeleteMy heart breaks for you. I'm a CF mama too. Sending lots of mama love and prayers your way. Elise
ReplyDeleteI am so heartbroken right now. My daughter is 11 and has CF. I, like you seem to be, analyze everything. There has to be something else, some big piece of the puzzle that is missing - or is it just ME that doesn't want to look for it? Cf is agonizing and cruel but then life is so beautiful and wonderful. How can the two coincide? I am rambling as I am hurting so profoundly with you. I hate this disease. Hate it. Hate it. Hate it. You are in my thoughts and prayers. If you ever need anything I am not far away.
ReplyDeleteHi there. I don't believe we've ever met but my husband was a classmate of your husband's, and I have been following your story for months now and just want you to know that I am praying for your fiercely every day. I am a mother too and I cannot even begin to fathom how you must feel, but I just wanted to you to know that my thoughts and prayers are always with you.
ReplyDeletesarah: my heart is broken. i'm so very sorry. there will never be words to say to soothe the hurt. know that you, brad and the boys are always in our prayers.
ReplyDeleteI am so sad. Your family is in my prayers and thoughts.
ReplyDelete37 years ago my best friend, Debbie, lost her battle with CF at age 16...I thought there would be a cure by now.
We grew up together...she was 2 months older than me. Back then the treatment was an oxygen tent. I would crawl in there with her and we'd play with dolls and then later we'd just talk...when she wasn't coughing. When she died it was like losing a sister.
Anyway, I wish I had the right words to offer...stay strong. I can't imagine how horrible it is for your family.
~Diana Nurkowski...CA
Hi, my name is Samantha Loney, formaly Scheller. I went to high school at Ilwaco. The post about the Red For Connor, I was left wondering where the march takes place, and to where we send our pictures? I have several people wondering. If you could let me know, I can pass on the info. Thanx!
ReplyDeleteHi Sarah, my husband and I are missionaries in Indonesia. It is hard to find words to bring comfort for such pain you are experiencing in your life. But we lift your family and Conner up to the Father that He will bring peace and comfort to you in your time of need. That you will know His powerful presence and experience His grace. We are praying for all of you.
ReplyDelete