1/1: A restful day

Hey Folks -- we took advantage of the Holiday and didn't do much today. I took a much needed nap and Diana headed home to spend some time with Annabelle and get some things done at the house.

It's funny that when you rest, you realize how tired you are.

So, we thought that maybe Emily was getting closer to extubation and we weren't sure how that was going to fit into transferring to Wisconsin. We are supposed to hear back from Aetna Wed afternoon, but my guess is we are going to have to call them over and over to get the final word on an approval or denial for a transfer. After the doctors "rounded" we began to feel less confident that Emily is close to extubation, but I have to say that I am not totally sure that they are focused on the right ween settings for Emily. As she nears extubation time the pressures through the tube that are used to give her breaths, the rate of the breaths, and the amount of supplemental oxygen all need to gradually be lowered, as well as her sedation medication -- but there is some difference of opinion as to how those setting need to be lowered and what settings are more important when it comes to SMA kids. Dr. Bach is the forerunner when it comes to noninvasive ventilatory support (NIV) and proper extubation with SMA kids and believes in a very specific weening process.

Anyway, the doctors here foresee at least a few mores days being intubated and we will find out about the transfer tomorrow. Until then everything is kinda up in the air.

Thanks for your continued prayers and encouraging comments and emails.

Peace <><


Anonymous said…
Hey guys,

Thanks for the updates. They help us to direct our prayers. Also for the pictures, they seem to cement things more in my mind.

We are praying for strength for you both and for healing for Emily.

It was good to see a picture of your Mom and Dad. Tell them hey for us.

Coach G and Mrs. G
Anonymous said…
Nate and Diana,

Although we don't know you guys too well, I just wanted to let you know that we pray daily for you, for Emily, for the Lord's comfort, wisdom, healing and peace. I imagine there are more people out here praying than you know about, and I hope that is encouraging.

John and Jen Sigmon
Anonymous said…
Hi Nate and Diana,

I'm following your journey and again pray for wisdom and grace for you both as you care for precious Emily.

Happy New Year!
Maureen Foley