The blog I never wanted to write...

Hello! I hope you're doing well tonight/today as you're reading this, I hope everyone in your home is healthy and this new year is bringing you boundless happiness, good health and lots of energy. Life for us has been very difficult this past year, and even more so this past few months. I felt its important to bring everyone up to speed on our sweet Conner, so much has changed.
Conner has still been fever free since we took him off the IV zosyn, and that is wonderful news. Yet, the last two days he's just kinda looked not right. He's pale not eating very much, and his breathing is still noticably difficult, harder, causing his oxygen needs to increase. I spoke with Dr Wall about it today (his cf doc) and he pulled me out of the room to "walk" and he pretty much said that it's just obvious that what we're doing for him isn't enough, it'll never be enough. He doesn't ever really get better anymore w/o IV's, doc says the IV's are just kinda keeping him alive, and no longer fully getting rid of his lung infections. We discussed conners make a wish trip coming up this saturday and he said that some of the other CF docs don't really want Conner to go, they think he's too fragile and this trip might be too much for his health to handle. But both Dr Wall and i agree (and brad too of course!) that this is his one heart felt wish. he talks about it nonstop. and he deserves this trip. his life is no longer about quantity, it's about quality. Dr wall said that if we had any shot in getting him to hawaii it would have to be now, because he doesn't think conner may have too much more time with us. It is very devestating and heartbreaking news. So even though Conner's not back to his old self yet, we're discharging him from the hospital tomorrow am (thursday), we will do oral antibiotics to hopefully tide him over for this trip, we have plenty of oxygen for hawaii, and we're going to have Conners wish fairies come to our house for dinner tomorrow night to present him with his plane tickets and travel itenerary. help to cheer him up. And saturday we will board that plane and even if he only gets there to see the whales and then his health turns, you know what? at least he got to see them, his one true wish. But I truly feel it'll be the relaxing time that he wants it to be. Since my dad and rose will be heading home the day we're heading to the island, the doc and i felt strongly that we have someone there to help out, not only with bradyn, but to be there incase conner gets worse and needs to go to the hospital there, so we have support and help with the other kids as well. I called a dear friend to explain what we're facing today and within 10 minutes she had collected the $450 for my moms flight to hawaii to be with us to help. amazing. it means so much to us how our community and family and dear friends have bent over backwards for us. for praying for us. for letting us cry. for keeping our minds off things. we've been truly blessed.
Dr wall and I also discussed that if we need them anytime, of course i know the oncall number and they're their 24/7 for us, and if we get home from hawaii and it took its toll on his little fragile body i can call and we can bring him back in for more iv's. they've been very compassionate and caring to us.
this is a very hard letter to write, but necessary given the current circumstances. Doctor did not and will not give life expectancies or timelines because cf is so unpredictable when it attacks full force, as we've learned much too well these past months. we are going to go and make memories and i pray that god will allow us some more time with Conner...i'm not done loving on him yet.
Please understand that this was horrific to write. It's even more unimaginable to say these things aloud and talk about them. So please for the time being, please just give brad and i some space with this. we can't and don't wish to talk about it. this is too much to bear right now, and we're still having to put on brave faces for our Conner so he doesn't get scared or give up his fight. And i'm trying my best to keep my attitude positive, yet realistic. I still hold out hope.
this is a letter i wish i never had to write. im glad it's done now.
Love to you all.
Sarah