RSV Season Advocacy: Tips Sheet, Survey, & More

Sadly I have heard of too many parents with preemies that were denied the Synagis shot and despite their best efforts at hand-washing, isolation and more, they still wound up in the hospital with RSV. As a parent that suffered through a winter with RSV isolation and more but was lucky enough to get the Synagis drug for my daughter, I find this an insult to families everywhere and I am doing my part to speak on behalf of these vulnerable families.

Action Items:

1. Please spread the word about our “RSV Parents Tell It Like It Is” survey here.

2. Please download and use your social networks to get out these tips for Access to Synagis .

2 Comments on “RSV Season Advocacy: Tips Sheet, Survey, & More”

  1. Hello My name is Melissa I am the proud mommy of Jeremy. He was a 25 week preemie. He is now 18 mnhots old and for the most part has no problems. He has seasonal allergies, food allergies and reflux. Jeremy had no brain bleeds, no bowel problems, his heart closed with only the first dose of medication that they give. We did have our share of ups and downs. We went from the vent to the c-pap to the vent back to the c-pap to the Nasal INV to the c-pap and then to the nasal canula and of course back to the c-pap and finally to the nasal canula and then room air. I never thought he would breath on his own but he did. He was in the Nicu for 80 days and then to the regular nursery for 34 more days. I stayed at the Ronald McDonald house the whole time when they could have me. I am a nurse and have worked in an adult ICU so I was prepared for what I would see and what would happen. I found myself wanting to take over his care many times. I was never prepared to be the mommy of the patient though. I was strong and weak. I cryed alot but never felt depressed. I always thought that if I did it was like I was giving up and I never wanted to do that. I took pictures of everything. It wasn’t a great beginning for Jeremy but it was his beginning. I want Jeremy to know that I never gave up on him. I have though started to cry and become very sad when I see anything that has to do with the NICU. I can’t even watch a tv program that has anything to do with a NICU on it. I guess I am just wondering has anyone had this kind of responce at such a long time past the NICU time. I feel like I should have been feeling like this way before now. What do you all think? If anyone would like to talk contact me on facebook Melissa Gunter (Kelley)

  2. One of the most beautiful, inspiring and informative BLOG both for suffering patients & medical professionals.
    Finally when you see the hard work put by so many people and the positive result of growing up kids, its gives SATISFACTION and stimulates to put more efforts.
    THANK You Deb Discenza for your sweet Blog.
    Keep it up.

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