Evie & The Purple Dinosaur

Evie is still sick with the Metapneumo virus , which landed her in the ER and a weekend hospital stay two weeks ago. This upper respiratory infection really kicked it up a notch over the last few days and she began a thick cough the day after Christmas and having more difficulty breathing through her nose, which makes feeding difficult because she gets very frustrated trying to breath while taking a bottle; nearly every breath is a "snort." Sometimes she spits up a bit after a longer coughing session, which has us scrambling to hold her bib up (we've gone through more bibs than I can count in the last two days).

Watching Evie's little self cough so hard and struggle to clear her airways is one of the hardest things I've had to watch; even more so than everything I've seen happen to her at her hospital stays.

We've been shooting the saline solution up her nose and sucking out the loose mucus quite often, but she hasn't been sleeping well, and I needed to stay up with her last night on the couch to make sure she slept in an upright position becuase she cried immediately as soon as we tried to put her in a bouncy seat. As you can see, I didn't even get a chance to change clothes.




Sharon took this pic of the two of us around 9AM.

We saw her cardiologist for a checkup Thursday afternoon and her oxygen levels were pretty good (around 74-83). She cannot have her first heart surgery for at least a week or two after her virus clears up, so we were disappointed that she seems worse than ever two weeks after the diagnosis. I took Evie to see the pediatrician this afternoon, and she gave me a script for Xopenex, which is administered via a nebulizer (a nebulizer uses forced air to turn a liquid medication in into a mist that can inhaled deeply into the airways). Although the Metapneumo virus--like all viruses--cannot be treated with antibiotics, hopeful the Xopenex will break up the mucus and help her breath better.


The pediatrician gave me a baby-sized mask (that was still too large for her face) for the nebulizer that makes it look like she's wearing novelty animal snout mask, only this one looks like a purple dinosaur (or maybe an iguana?). The medicated mist is orderless, but Evie hated having the mask against her face and screamed bloody murder for half of the 15 minute treatment, and then oddly fell asleep for the last part. I posted a picture below of the mask and a short video of the treatment. I'll spare you the first video I took where she was screaming the whole time. She is supposed to get a treatment every 6 hours.

We really hope this treatment works!

[UPDATE] After just that first treatment at around 8PM, I think we've already seen some results. She is "snorting" a lot less with each breath and I have not heard her cough very much through the monitor. She was breathing very calmly after her midnight feeding. Hopefully she'll be in much better shape after a weekend of treatments for her Monday morning follow-up appointment.


Evie says, "I am a champion sleeper! ... when daddy is holding me, that is."




The purple dinosaur nebulizer mask. It's too big for her face, so we have to hold it and try not to mash it into her eyes.



Here's Evie with the mask after she's fallen asleep half way through the treatment. The machine is quite loud.