Overnight and Q & A

Our goal last night was to keep her off oxygen...

When we arrived, she was at 1 liter of oxygen.  Yesterday they had her down to .5 liter.  They decided to turn it off and see how she did...not good.  I recommended that we do it point by point, since she seems to think that she needs the smallest bit of oxygen.  We got her down to .1 last night...which is like NOTHING, in case you were wondering, but we just couldn't get her completely off!  THAT is not enough to keep me here another night and I will express that when the doctor comes.  They took her off completely this morning and she is doing great.

This is mostly for Daddy, but this is her sleeping stats right now...

I'm not packing yet...but hope to be soon!

Q & A

1.  How do you do it? 

               With lots of help!  Woody and I each have our roles and mine is hospitals.  He would rather do ANYTHING other than hang out here...even over night and it would tear me up to be away from her when she is so needy...so it works out.  While our immediate family is far away...we have a wonderful "family" here who step in at a moments notice to help watch kids, which is sometimes our biggest need.

                Faith...We trust God's plan and purpose for all of this.  Another Dad wrote on his son's blog today about something he had read in a book this week and it says exactly how we feel...

(Matt is the lead singer for Sanctus Real and he blogs about his son's heart surgery and hospital stay here.)

“I hear religious minded people say all the time with good intentions. ‘God will never place a burden on you so heavy that  you cannot possibly carry it.’
Really?
My experience is that God will place a burden on you so heavy that you cannot possibly carry it alone. He will break your back and your will. He will buckle your legs until you fall flat beneath the crushing weight of your load. All the while He will walk beside you waiting for you to come to the point where you must depend on Him.
‘My power is made perfect in your weakness,’ He says, as we strain under our burden.
Whatever the burden, it might indeed get worse, but know this-God is faithful. And while we change and get old, He does not. When we get weaker, He remains strong. And in our weakness and humility, He offers us true, lasting, transforming, and undeserved grace.”

-Greg Lucas

2.  What are they doing for Aubrey?
             She is getting the drug Tamiflu for her flu bug.  She has some virus/cold that is making the breathing harder and so they have had her on oxygen.  They are doing Respiratory Therapy every 3-4 hours.  She is little and things tend to settle in her lungs and she can't get them out.  It is better this year, because she can actually have a "productive" cough and get some of it out herself.  Therapy consists of nebulizer treatments and CPT-cardio-pulminary-therapy.  It is an ever evolving therapy and they try all different things.  This time we have a vest that fills with air and then "shakes" her!  Whatever works I guess.

(pardon the look--it has been a few days since a bath happened and the hair is getting out of control:)

3.  What will you do for the rest of the season/holidays?
             It is 77 in Dallas today-not that we would know since we haven't left our room since Tuesday-but it is hardly winter here and she is already getting sick.  We will go under strict house SANITIZATION.  I have to admit I have been a little lax about the girls coming home from school and playdates and washing up before playing with Aubrey--but that will change and we will be strict about all who come for therapy and visits.  It is important...so it must be done.
            While we don't / can't hold up completely in our house all the time, we will do the best we can to at least keep her away from germs when we go out.  So if you see us and we scoop her up and don't let you hold or touch her...it isn't cause we don't like you...but we are just trying to keep her healthy.

4.  Are you used to the hospital thing?
             You never get used to it...you do get better at it.  I know what we need to have here, to make it easier.  I know how to better advocate for her and to TELL them how to make their lives easier, because we have done this before and I KNOW what has worked in the past.  There will likely be a bag packed in the car all the time now...just in case.  Being prepared and organized is key and makes life easier on the man who has to take my list of demands requests and gather them each night to drop off!

Thank you for all of your prayers and words of encouragement and help.  We appreciate it so much.  Along with the Lord, we couldn't do this without all of you either.

We'll let you know what the doctor says later...