I just learned that Chloe was almost denied a second year of Synagis!
Synagis is the shot to help prevent RSV (Respiratory Syncytial Virus). Very young babies are at risk for complications if they contract RSV. But, as you can imagine, so are babies diagnosed with Chronic Lung Disease of Prematurity. For otherwise healthy kids and adults RSV usually presents itself as a simple cold, cough, runny nose, etc. And for this reason, it's very scary to me. Someone with a simple cough could infect Chloe with RSV. I called her pulmonalogists office the other day to ask exactly what are her risks if she got RSV. Bacterial infection, dehydration, difficulty breathing, increased oxygen requirement - and hospitalization. Sometimes I get the feeling people think I'm overprotective of Chloe (not that I care). But if you've ever watched your child bradycardia, go limp, and desat until they turned gray right in your arms...or if you spent 150 LONG days juggling home life while traveling to and from the NICU to visit your baby - then you would probably be pretty scared of RSV, too. Prematurity doesn't end when they come home...
I also learned that the only reason the insurance company approved her was because she's still on oxygen. I've never been so grateful for Chloe's pulmonalogist! Thank goodness for his last order! I just received the letter from the insurance company in the mail. It states that she's approved for 5 doses (they're given monthly) and that will get her through RSV/flu season. We go visit the pulmonalogist on Thursday. I don't think they'd pull back approval if her oxygen status changed but I'm scared to ask. I'm sure they were less than anxious to approve synagis (at $1200 a month).
For now I can take a little sigh of relief. In the safe confines of my house, that is, because the actual Synagis still hasn't arrived for Chloe to get her first dose.
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Good for you! my daughter only got the synagis for her 1st flu season -- then didn't get it last year (she was 15 mo) and of course - she got RSV from her brother (they don't share toys but sure can share germs). We wound up in the hospital tethered to the oxygen tube for 4 loooooooooooong days. And - hospital rooms are NO FUN for toddlers (or their mommies).
ReplyDeleteRSV is such a scary word for preemie moms. Luckily, Olivia has never had it. She was, however, denied her second year of Synagis last year. They deemed her "too healthy." She was, but only because we did everything humanly possibly to make it that way. Some people thought we were too overprotective too. . .they just don't understand unless they've been there. You are doing such a great job!!
ReplyDeleteWe didn't have issues with it being approved last year, but I know some people did. I think it is amazing they will take their chances on a potential hospital bill running tens of thousands of dollars vs paying for the shot. Which incidentally is outrageously priced and it's very unfortunate so many that need it can't afford it. Not to mention that it risks the child's health. Glad you got it approved. :) I don't worry about Rhys getting sick any more (other than no parent wanting their child sick), but when the pedi mentioned she was testing Zoe for RSV the other day I about had a panic attack. Scary stuff!
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