Tuesday, February 7, 2012

Doing well at home!

Emily had trach surgery on January 19th. She was discharged directly from the PICU on January 27th, the day before my birthday! What a great birthday present. She did great during the trach surgery, and was smiling within 6 hours of surgery. She is amazing! She came off the vent in recovery and was off oxygen and on room air within 24 hours. :) She's a rock star!
Being home was a bit rocky at first, but we are settled in now. There is quite a bit more care involved now, and leaving home is quite a feat. The number of pumps/machines/bags that must go with us is a bit nuts. In the end though, she's doing fantastic so no complaints.
Tomorrow is a big day for us. We are meeting with the most involved in Emily's team of doctors - GI, TPN nurse, Neurologist, Palliative/Pain Dr, and social worker. We have been asked to sit down and detail what we want in the future for Emily. What our choices are about her medical care. For example - if she was to become septic and need to be put on a ventilator, I say do it. Give her a chance to fight the infection and recover. But if she is no longer alert and aware and isn't going to recover and come off the vent, I don't want her on it. I am not willing to keep her alive in a shell of herself. Her personality, her facial features, her love - those are Emily. If we lose those, we've lost her. This meeting is not going to be fun. I am happy that my husband has taken tomorrow off of work and will be going with us. Emily has some new nurses finally, and a nurse will be with us as well to keep Emily occupied and entertained. If you have a moment, please pray that we get through this meeting and can come to some decisions. Look at this girl - this is what we fight for!


Colleen said...

It is a lot of hard work getting out of the house with all of the "stuff." Before you know it you'll be a pro at it. I hope the meeting goes well...those kind of decisions are never easy.

Zoey's Mom, Heather said...

So glad you guys are home and getting onto the groove of your new normal.

We love you guys and continue to keep you close to our hearts and in our prayers.

Alison said...

Wow - what a huge meeting. Will be praying for you all.

I Just Love You said...

that is a meeting that no parent should have to do. i can only imagine how tough it's going to be to say your thoughts out loud. sending you thoughts of strength.

The VW's said...

Praying the meeting goes well, and Emily continues to do well too! Love that girl! Hugs!

Junior said...

prayers that the meeting goes smoothly. Happy to hear that Emily is home and doing well.

Kels Anne said...

Hello, I recently started a blog for helping kids and teens who are sick through music. I also have a youtube video for it. I have provided the links below.

Keep Shining
Keep Dreaming
Keep Believing
Don't Give Up

The link to my video:

My blog:


So happy surgery went well. I know about traches as The Boy had one for the first 4 years. Yep.....going to the playground is a little more complicated but perfectly doable!

Buttercup said...

My prayers are with Emily and all of you.