That little miss of ours...
If it's not one thing it's another with her.
Today she can't keep her oxygen saturations where they need to be.
For someone with a healthy heart, normal is the high 90s.
For Emily, normal is anywhere between 75 and 85.
They don't like her higher or lower than that.
When she sleeps at night she drops down into the 60s.
The nurses try to avoid giving oxygen to Emily.
And it's not for the reason you might think.
They all know that Emily's daddy gets annoyed.
Not with the oxygen, but with the stickers that hold the oxygen cannula in place.
In fact, I think it says somewhere in Elimy's chart 'If you have to use oxygen, remove the stickers before Dad gets here for the day.'
The lower oxygen levels are most likely an indication that the little miss is outgrowing the shunt that was put in to bypass her pulmonary artery until she was big enough to have surgery to repair it.
Here's another piece to Emily's puzzle.
The formula Emily is getting is diluted so that her gut can tolerate it.
In order for Emily to get the calories she needs to gain weight she would have to have something like
36 mLs of formula an hour.
But that amount of liquid would cause her heart to work too hard, and her lungs would be flooded.
The plan, as of today (and keep in mind the plan changes pretty much every day) is to get Emily to 26 on her feeds, making sure she can tolerate them, and then to send her home.
Don't get too excited.
It's only temporary.
Emily has an infection that is commonly found in kids who have had long-term hospital stays.
Emily's surgeon feels that Emily will have a better chance of recovering from the infection at home.
Once she has recovered and her body is free of any and all bacteria, they will operate.
The time frame I heard today is 2 weeks.
Our hope...our wish...our goal...our prayer...is to have Emily's surgery and then to have her home by Christmas.
It's a long shot and we know it.
On the chance that you think it's mean and cruel to operate on our little miss during the holidays...
It's actually a blessing, and something we asked for, knowing that Emily is okay to have her surgery now.
Plain and simple?
Our insurance starts over again January 1st, and having to meet our deductible twice in four months?
By tomorrow the plan could be entirely different.
Would you like to see the trend we're noticing?
Oh my honk she's cute.
Thanks for loving my baby girl...