This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I’m glad to have good news all around after having a Debbie Downer moment following our hectic day at the hospital.

First off, I visited my office this week to take care of various matters. Not only was it great to wear real pants and be out in society, as opposed to my yoga pants uniform and living room bunker, I found out my colleagues formed a running team to support cystic fibrosis research and little man.

The aptly named “In the Lede” is set to run the Color Me Rad 5K in May. The whole race is fundraiser for the Cystic Fibrosis Foundation Sooner Branch.

I’m so honored and inspired that I think I’ll go for a run. That’s what I said last night before polishing off half the cookies Laila and I made together, sure, but I mean it this time. Kidding aside I am really touched they would think to do this. It feels 70 degrees here today so I really will go for a run.

In other news, Eli is all set to receive the second dose of a vaccine called Synagis.

He got his first dose while in the NICU. Babies with cystic fibrosis get this vaccine once a month during RSV season. What’s RSV? This is from the CDC page:

Respiratory syncytial (sin-SISH-uhl) virus, or RSV, is a respiratory virus that infects the lungs and breathing passages. Most otherwise healthy people recover from RSV infection in 1 to 2 weeks. However, infection can be severe in some people, such as certain infants, young children, and older adults. In fact, RSV is the most common cause of bronchiolitis (inflammation of the small airways in the lung) and pneumonia in children under 1 year of age in the United States.

It would be bad news for Eli to get RSV, but especially before his next surgery. Laila got RSV while Eli was in the NICU. We all had to wear masks and protective gear over our clothes for about two weeks, even though we weren’t sick. She obviously stayed far from the hospital and recovered just fine.

I mention this vaccine as good news because I almost had a heart attack at the cost, and then recovered after a kind customer service woman did some clever maneuvering. The woman located a copay program put on by Synagis’ maker, MedImmune, that offsets the cost by $2,000 a year. What that meant for me is that I was about to be charged $1,000 but somehow owed only $50 copay after this helpful woman enrolled me in the MedImmune program.

I also mention this in case anyone else whose baby needs Synagis is quoted something outrageous, has a heart attack, and then Googles looking for answers. It doesn’t hurt to ask…! Or in my case, say “Holy crap! Are you sure!?”

Each dose of Synagis costs (my insurance company) thousands of dollars. Eli will need six doses this year. So, yes, locating this program is a huge deal and a huge relief. I’ve made a mental note to research manufacturer programs like this as we get more into his care.

The fact it’s RSV and flu season is the reason I have barricaded Laila and Eli in our house as we wait for his next surgery. It’s also the reason we have limited guests to family and I (coldly) tell people with colds not to come. I hope to be less psychotic at a later date — once buddy recovers, I get used to the fact he’s got CF, etc. Because we will all need to get back out again. Laila, and eventually Eli, will go to school, Mark and I will continue to work, and we won’t live in a bubble but the big wide world, germs and all.

I love nice customer service people.

I wish I could say similar nice things about the darn chopper company. Eli had a chopper ride the day after he was born to have surgery at Children’s. The chopper co is *really* on top of billing and keeps sending us letters and calling. The customer service reps I’ve talked to are a little…edgy.

I can forgive them this – what a crappy gig. People like me call wanting to know why they just billed my 1 month old child $22,000 and continue to bills addressed to a baby after I told them to bill our insurance. It turns out there was just a minor technical glitch with Eli’s insurance that needed to be ironed out. Now that it is the bill will go to the insurance co, not poor buddy, who can’t write checks, or hold a pen, or write, or make money, because he’s 1 month old.

It’s a beautiful day today and Laila, Eli and I are spending a little quality time in the back yard. I finally had a chance to knock out a few words because Eli fell asleep and Laila started talking to sticks and leaves and dirt after some hopscotch and soccer with moms.

Eli 1.23








One thought on “Little buddy, little update

  1. We did Synergis for Luke, too…. Ah, memories. Are you in this program? I Googled Children Special Health Care Services, which I guess is a state-run program. I don’t know if OK has a similar one. But the Supplemental Security Income was another one we were in. Every bit helps!


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