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Thanks! He loves gateroade and salt water and has had a ton of both. He also loves all \kinds of potatoes (other than mashed or ba\ked). So I'll just \keep them going.

Is this "normal?" DS has been as\king for much more water/gateroade than normal. He doesn't have too bad stools and isn't peeing more than typical , or if so, only slightly. He didn't have much to drin\k in the 2 wee\ks leading up to it so I'm thin\king his body is trying to ma\ke up , but...

Thanks all! I asked nurse when following up on the PICC line remove in a couple weeks and she said the doctor thought it was likely because he's never really been on antibiotics (only once at 3 months) and is likely just hitting down the stuff that was lingering there , and of course your...

I'm. It a runner and as such have discovered one non shoe related reality: if you try to run as a non runner a mile is hell. But if you run a block, walk a block , etc. you will get better exercise, less painfully and thus more like.y to endure...so says she sitting on the iPad eating in the...

Vertex has three or four studies enrolling heterozygotes for the next generation triple combination. Vrtx.com has a list of pipeline and link to clinical trials in case you haven't heard about these.

So DS had both a CF and an asthama excerbation after catching RSV. We we in hospital from Wednesday to Monday on IV antibiotics and home the finish course. His FEV was down to less than 60% but back to 77% before we left. He is complete recovered from the surface. I am waiting another day to do...

I can't quite get away in time sometimes...I wonder when DS will realize that my happy tears because I love him so much aren't always happy.

I love that idea especially since this am a totally forgot the cap and had to leave syringe in and in downstairs.

Anyone with input on one in Detroit area? Or suggestions on how to research or what to ask (besides if they do Eclipse)? THANKS!

Thanks Tom. Good to \know esp. on the scar tissue! That would freak us out!!!

thanks Michelle. DS turns in June. While he's had bad GI stuff we've been blessed lung wise and this is actually his very first cold!! So ditto on Picc line. he will be sedated and they've wal\ked us through it all. just nervous but \know he needs. His lung function is down to 60%from...

Than\k you so much. DS doesn't li\ke sweets so that's good. And also helpful to \know b/c his blood sugar was up. And he is a emotional burst!!! So another good thing to \know. Than\ks for all the input.

Autumn shared Eclipse pointer. any others for PICC line or Home IV time? What do you wish you knew? Things to watch for? Ask? Do? Don't do? THANKS!

Thanks for the notes. So DS is hanging in there. Cough improving and lung sounds. Xray was pretty clear to start so ended up being good decision to nip in the bud so it didn't get horrible. PICC line Monday or Tuesday and home if his FEV improves. He was down to 50% but they hit with steroid...

Augh. Doctor wanted admitted for iv antibiotics after tad of blood in mucus. Nasal swab shows RSV. Waiting on cultures.

thanks. we do xopenex before hyper-sal and we are only doing a tad now. I have a call into center where to plug through or move to 3%. He does have productive coughs and sometimes stuff comes up but clear. other times it seems his asthama irritated cough. He is continuing to improve and no...

So sorry mom. Prayers for you both. I know some older threads had some great info on this. Hugs and prayers Love

Can you all share what's a "normal" CF cough when sick with a nasty chest cold? How often? What intensity? I was/am still hacking (obviously away from him) but of course when he coughs it sounds more and worse and just wonder if that's the "normal" for a sick CFer? He went last night without...

jshet. I don't have any insights but wanted you to know your DS is in my prayers...as is mom. Hugs Love

augh. I'll say some prayers it isn't. big hugs , ,Love