Recent content by debs2girls

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I subscribed to Netflix for the purpose of watching it in hospital as well as at home. Our hospital doesn't support streaming videos, so it doesn't do us any good to have it.

My daughter doesnt have a CT scan at her clinic but she does have them when admitted. It was 4 a year but they have decided that is too much exposure so now it is only 2 a year.

Thank you, Teri. We started the Vanco this morning..she is still on two IV antibiotics as well.

We are still in the hospital but hopefully going home soon. I did talk to the doctor about using inhaled Vanco. He said he would try it, along with another inhaled antibiotic on a two week on, two week off rotation. He said the inhaled Vanco isnt for everyone, so we will see.

She is being admitted tomorrow to start IV's....and so it continues.

My daughter is on Omnicef. That is his fallback antibiotic and it doesnt work on her either. So far, she isnt responding to the steroid either. She doesnt have a feeding tube because she is a heavier cf'er for her age. Her lung function is in the low 70's when well and lower when she is...

Thank you, Jenny.

Well, we went to the clinic on Tuesday for all the good it did. Her weight is down some more, no appetite and little to no energy. Despite being on two other oral antibiotics since Oct 19th, he put her back on another one and added a steroid. I am to call him on Tuesday to discuss admit options...

Jen, I am so sorry you are dealing with this too!! We have never met, yet you just described my daughter to a T. Her dr insist on doing a minimum of two rounds of oral antibiotics before starting IV meds. He will agree with me that we are past orals but still prescribe them..all the while she...

I stumbled upon this place 7 years ago. We were waiting for the results that would change our lives and I desperately needed someone to talk to. I usually just went to my sister for support but she had passed away 11 days before. I started searching and found a great place with wonderful people...

Our doctor said we needed to either use a salt filtration system or have it heavily chlorinated or dd has to stay out and definitely no hot tubs ever!

I set an alarm to flush as soon as it is finished...I have on occasion, slept through the alarm. It has never been a problem but I would try to avoid it happening too too often. Good luck!

My 12 yo's lung function is 61%, on a good day

Thank you. I sent her a PM.