I started this as a Facebook status and then was like, whoa, this is going to be WAY too long. So blog post it is!

Kind of a rough night last night. Ike was up to 4 liters per minute on the nasal canula for a bit, which was Not Cool so I had a long talk with the pulmonolgist on call about hospital versus no hospital. We decided on no hospital but only because our house is still (thankfully) like a hospital (and Ike's liter flow per minute went down). We have the oxygen. We have the proper regulators for the tanks. We have a concentrator if the tanks run out before we can get refills. We have a pulse oximeter. We have two different kinds of nebulizers and enough saline bullets and xoponex to last a while. We have a nurse on Fridays (and can get more nursing if we need it). Etc.

I say that, just because this is not for the faint of heart. I don't want someone who's kiddo has lung issues (or is a former preemie or whatever) to stumble on this blog and see that Ike has RSV and is at home and have them think it's easy and safe to manage. It is not easy. And it's only safe(ish) because we have the equipment and staffing we need, and we have two years of crash-course at-home medical treatment experience. The hospital can only provide therapeutic care for RSV, which is the same care we have here. The only benefit to being at the hospital is if he crashes, we're minutes from the ICU instead of an ambulance ride. That's a pretty big benefit, but after our visit to the pediatrician and the pulmonologist, everyone agrees that Ike will be more comfortable and hopefully get better faster with constant care at home.

I didn't even tell you guys that after we got home from the pediatrtican's office on Monday with the RSV diagnosis I got a call from the ER (we had been there on New Year's day) and they had re-reviewed his chest x-ray and wanted to treat him for pneumonia. Well, the ER never tested for RSV and our pediatrician said that Ike's x-ray looked like an asthmatic with pneumonia because that is exactly what an x-ray looks like when you have RSV. So lots of back and forth between the ped and the ER about whether Ike needs sntibiotics. His CBC was normal, so it would be a viral pneumonia. But his ear is infected so we decided to opt for some Omnicef.

Crazypants, right?

THEN, we saw the pulmo today and he showed us the x-ray. Ike's lungs are overinflated (which looks like ashthma) because of the bronchiolitis from the RSV. The white patch does not show pneumonia, it shows an area of collapse. Too much mucus = atelectasis, which is a fancy way of saying the middle part of his right lobe is kind of collapsed in on itself.

This kid. RSV, atelectasis, oxygen, ear infection, and he's in the doctor's office saying Bye to everyone and choo-chooing because he saw a train out the window.

So we're home. For now. No one is sleeping. We're doing a million saline nebs (because the xoponex/albuterol drops his sats), lots of banging on his chest, steroids (both oral and inhaled), antibiotics and motrin here and there because it is magic.

Bad: RSV

Good: No additional pneumonia right now

Bad: collapsed area of lung

Good: still wanting to sort of play and yell at people

Bad: Stupid medical supply company sent the supplies requiring a signature and we were not here when UPS came so we won't get the supplies until tomorrow.

Good: At least we can get supplies delievered to the house

Tired. Scared. But happy to be avoiding the hospital for now.


6 thoughts on “Update

  1. Our daughter was just in hospital for 5 days with RSV (she was a preemie too, 3 yrs ago and has chronic lung issues) and anyways my point is – they had this awesome new pediatric pulmonary jiggle vest thing that worked wonders on her. She wore it for 15 minutes at a time, immediately following breathing treatments. She didn’t love it, it’s loud and mightily rambunctious, but it did the trick. You can search it by “cystic fibrosis vest”. Wishing Ike a total and super speedy recovery.


  2. I had a similar issue at Dell’s. Dell said my daughter’s lungs were collapsing after pedi said it was just pneumonia.


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