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Monday, June 21, 2010

TOBI update

We started TOBI again this morning. So far, it’s going well (knock on wood!)! I called to our Nurse Practitioner (NP) today and we discussed our game plan for Ben and his constant culturing of pseudomonas.

We both agreed that since he’s tolerating the TOBI treatments again so well that we should get another month in. At the end of that month (July 19) we will go in for our 10-week clinic visit and reculture him. IF the p-word shows up again, a hospital stay it is. We both agreed that we needed to give it one more shot at home before jumping into a hospital stay but at the same time, I believe a hospital stay would be good for him. He’d be on a 14 day course of IV TOBI and a couple other antibiotics . He would vest 3-4 times a day to optimize our time in the hospital and help get out as much as possible.

I talked to her about continuing the IV’s at home so we don’t have to be in the hospital for 14 days straight. She said that they usually don’t let children as young as Ben go home with IV’s but if I felt comfortable with the care of home IV’s, they would be willing to train me.

That’s what I’ve learned about our CF clinic, I have to ask or go beyond what they tell me to get what I want. Example; they usually don’t order vest’s for CFer’s until they are two but since I inquired about it a couple times and asked them to try the vest on him (which did fit) they ordered it early for me. Same with the eflow system. It was not offered up to me but once I asked about it, they were more then accommodating. They prescribed us an Albuterol inhaler at first but then I asked them if we could do Xopenex, which is also a bronchodilator but it doesn’t have the side effects that Albuterol can have. Once again, they said no problem and quickly changed the prescription for me. I know they aren’t trying to short-change us, they just do things a certain way and automatically prescribe us the same as other kids. This is why I am so thankful for the CF community. By getting out there, I have learned so much. I have learned of other options, not to just take the ones I’m handed. I expect the best care for Ben and I know that I am getting it because I am pro-active in asking/demanding it. Thank you to all the other CF mom’s out there, to Ronnie, and to all the CF chats sites/communities!

I’d also like to send out a congrats to Jen and Casey over at The Groettum Family blog, they got engaged a couple days ago. I also felt very honored to be asked to stand by Jen on their special day. This is one positive thing that Ben’s CF has brought into my life. Phenomenal women like Jen. Mom’s who are in the same boat as me. Mom’s who I’ve never met in person but women who I talk to almost every single day. Congrats to their family!!


  1. Thanks Margaux! I am honored that you said yes!

  2. Hi Margaux, as a fellow CF Mama, I echo your comments about the CF community! I would also like to thank you for all your guidance and support I have received from your blog - your experiences with Ben are somewhat similar to my Tommy, and I look forward to hearing how you deal with the daily grind of CF! Keep up the great work, you are a great Mom! We found out today that Tom cultured PA again (his third time), so deflating and makes me question everything, but onwards and upwards! Good luck with the TOBI, we start another round on Thursday - boo hoo! x


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