Day 14: Home at last (#SMA)

We are home at last! 2 weeks ain't bad to be sick ad infected with Human Metapneumovirus + ear infection + pneumonia, intubated, extubated, and back home. We faired well and are grateful to God that all went as well as it did. This part of our story with Emily could have easily had another ending.


So we learned a few things this particular stay:
- Breast milk can be given to kids up to two hrs before operative-type procedures b/c it is considered a "clear liquid." This is phenomenal for folks like us who need to maximize Emily's nutrition surrounding intubation/extubation procedures and can not afford to fast their child for more than 4-6 hours.
- hMPV sucks. It is somewhat uncommon and there is no vaccination or treatment - it needs to run it's course - and it sometimes kills perfectly healthy kids with it's veracity. Also, hMPV almost always coexists with other respiratory viruses like RSV, or the Flu. Another good reason to keep your hands washed, coughs and sneezes to yourself, clothes changed if you've been at work or school and live with someone who has a fragile respiratory system, and clean items that person may come in contact with.
- Sinai: a) can intubate and extubated Emily successfully and works with us in the process b) continues to have the best hospital food around c) needs a Cough Assist in their PICU!!
- We continue to be blessed by our community through meals, prayer, visits, caring for Annabelle and our house
- Dr. Schroth continues to be a God-send for families with Spinal Muscular Atrophy
- So many other things....

Thank you for your thoughts and prayers. If I don't remember to thank you specifically for something you have done for us, thank you for that thing as well. :)

- Posted from my iPhone

Comments

eva said…
Amen! and Praise God she is home well! :) I have been praying for the Lee family and especially little ms. Emily Lee. I am so happy to hear she is home :)
Jenna said…
Special, Precious, and beautiful Emily!
My name is Jenna and I came across your site. U are an amazing, brave,courageous, strong and determined. fighter! U are an inspirational hero.
I was born with a rare life threatening disease.
www.miraclechamp.webs.com
Lia Renee said…
That's great.Good your home and Emily is better a big kiss Veronica and Lia
Lance said…
i hope that all goes well for her...