• Aboveallislove's Avatar
    Yesterday, 11:02 PM
    Thanks Penny! I'll let him know! He will be relieved!
    2 replies | 24 view(s)
  • Aboveallislove's Avatar
    Yesterday, 06:30 PM
    He wants to know when they remove it if it will hurt? And whether they need to put that sticky protective covering or just a bandaid? A big piece...
    2 replies | 24 view(s)
  • Aboveallislove's Avatar
    Yesterday, 05:57 PM
    Aboveallislove replied to a thread IV protocol in Adults
    How strange. I'd think it would be uniform with CFF. I had argued for 14 days because DS hadn't cultured anything new; definitely had RSV; we were...
    6 replies | 126 view(s)
  • Aboveallislove's Avatar
    04-25-2017, 01:23 PM
    Have you searched pubmed.com? If you have a name for it I can try to find any research on it/how it is treated.
    2 replies | 86 view(s)
  • Aboveallislove's Avatar
    04-25-2017, 10:24 AM
    Aboveallislove replied to a thread IV protocol in Adults
    Than\ks! That ma\kes sense and is helpful
    6 replies | 126 view(s)
  • Aboveallislove's Avatar
    04-24-2017, 10:42 PM
    Aboveallislove started a thread IV protocol in Adults
    Just curious: does your cf center do 14 days IV if you stay in. hospital but 21 if you go home? And do they sa 4 treatments per day the entire time...
    6 replies | 126 view(s)
  • Aboveallislove's Avatar
    04-23-2017, 07:38 AM
    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...
    3 replies | 210 view(s)
  • Aboveallislove's Avatar
    04-22-2017, 02:19 PM
    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...
    3 replies | 210 view(s)
  • Aboveallislove's Avatar
    04-21-2017, 02:19 PM
    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...
    4 replies | 562 view(s)
  • Aboveallislove's Avatar
    04-20-2017, 09:15 PM
    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,...
    7 replies | 462 view(s)
  • Aboveallislove's Avatar
    04-20-2017, 05:17 PM
    Aboveallislove started a thread Heterozygotes in Adults
    Vertex has three or four studies enrolling heterozygotes for the next generation triple combination. Vrtx.com has a list of pipeline and link to...
    0 replies | 308 view(s)
  • Aboveallislove's Avatar
    04-20-2017, 05:08 PM
    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...
    4 replies | 562 view(s)
  • Aboveallislove's Avatar
    04-19-2017, 06:51 PM
    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.
    2 replies | 455 view(s)
  • Aboveallislove's Avatar
    04-19-2017, 11:50 AM
    I love that idea especially since this am a totally forgot the cap and had to leave syringe in and in downstairs.
    6 replies | 652 view(s)
  • Aboveallislove's Avatar
    04-16-2017, 11:12 AM
    Anyone with input on one in Detroit area? Or suggestions on how to research or what to ask (besides if they do Eclipse)? THANKS!
    1 replies | 392 view(s)
  • Aboveallislove's Avatar
    04-15-2017, 09:24 PM
    Thanks Tom. Good to \know esp. on the scar tissue! That would freak us out!!!
    6 replies | 652 view(s)
  • Aboveallislove's Avatar
    04-15-2017, 02:12 PM
    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...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-15-2017, 09:57 AM
    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!!! ...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-15-2017, 12:00 AM
    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?...
    6 replies | 652 view(s)
  • Aboveallislove's Avatar
    04-14-2017, 11:35 PM
    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...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-13-2017, 10:59 AM
    Augh. Doctor wanted admitted for iv antibiotics after tad of blood in mucus. Nasal swab shows RSV. Waiting on cultures.
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-11-2017, 09:33 AM
    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...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-10-2017, 09:12 PM
    So sorry mom. Prayers for you both. I know some older threads had some great info on this. Hugs and prayers Love
    12 replies | 1243 view(s)
  • Aboveallislove's Avatar
    04-10-2017, 07:13 PM
    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...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-10-2017, 07:10 PM
    Aboveallislove replied to a thread Increased cough in Adults
    jshet. I don't have any insights but wanted you to know your DS is in my prayers...as is mom. Hugs Love
    31 replies | 2013 view(s)
  • Aboveallislove's Avatar
    04-10-2017, 06:02 PM
    augh. I'll say some prayers it isn't. big hugs , ,Love
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-10-2017, 04:00 PM
    PS Rebjane so sorry daughter got hit back to back , double wammy PLUS not having her doctor to run things by just adds to stress. Hugs and prayers...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-10-2017, 03:57 PM
    Thanks both. This is our first lung involvement , so while I'm a pro at the GI sh!t literally as DS would say I'm at a lose on the cough stuff. He...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-09-2017, 06:20 PM
    Under "normal" circumstances, how long does it take to return to "baseline" for a kiddo with a cold and doctor hearing something in one lung lobe? ...
    19 replies | 1081 view(s)
  • Aboveallislove's Avatar
    04-08-2017, 11:45 AM
    DS nose has been running so much and blown so much the inside is raw and when he blows he is in excruiating pain and little spots of blood. Is there...
    2 replies | 291 view(s)
More Activity
About Aboveallislove

Basic Information

Statistics


Total Posts
Total Posts
2,001
Posts Per Day
1.08
General Information
Last Activity
Yesterday 11:03 PM
Join Date
03-28-2012
Referrals
0

Friends

Aboveallislove has not made any friends yet