Tomorrow is the big day. My plan was to go to the hospital this morning, get you pre-admitted for tomorrow, and be home by noon to get things done and for you to nap. When we got there it seemed as if everyone had the same idea, and we were stuck waiting for a long time for each phase of the process. Honey, you, and I didn't get back until almost 5:00 and by then the entire day was gone.
Daddy came home, ate dinner, and the three of us spent some time together. We cuddled and read books--you think Daddy's sound effects are funny. In fact you thought most everything was funny today. You talked more than you ever have, and were very interactive with us. Ironic how that always seems to happen right before a surgery. Then I almost feel guilty taking you into the hospital because you are just so innocent and unsuspecting, and afterwards I feel like we are set back a bit. But I am still praying that this surgery is just what you need to jumpstart your growth and development.
We are doing something new this time--trying fresh frozen plasma (FFP). It is a blood product that is recommended for SLOS kids when sick or for big surgeries. We have never used it before, I guess because by the time you were diagnosed with SLO we had already been through several surgeries on our own, and discovered many of your issues through trial and error. At that point we had never used FFP before and things went fine, so I didn't look into it for the rest of your surgeries. But this is a big one, and with the flu going around I thought it was probably a good idea. Our surgeon spoke with Dr. Porter, an SLOS specialist and learned the protocol for dealing with FFP.
ARDS stands for "accute respiratory distress syndrome" and is often fatal for SLOS kids. A child could develop ARDS from an illness such as the fu, or even just from the stress of a surgery. Cholesterol (which you severly lack) in the lungs protects surfactants from oxygen damage. The loss of these surfactants cause ARDS. FFP has been found to quickly restore the lungs levels of cholesterol to normal. In several cases it has been life-saving for children who otherwise would probably not survive and in your case we are using it as a prevenative measure. I am grateful our doctor agreed to consult with the specialist on this issue, because I think it will be a really good thing for you.
Well Sweetness, it is now almost midnight and Daddy and I are finally finished packing up for the next few days in the hospital. How such a little girl can require so much luggage is beyond me. We are about to switch you from formula to Pedialyte then it is time for us to get a few hours sleep before we all head to TCH early in the morning.
Goodness I love you.