Sunday, January 23, 2011

What we are waiting for

The Neurosurgeon visited with us on Friday to let us know what the plan is over the next few days. While it is his theory that the pressure on the brain stem is what is causing Faith's low oxygen levels. He wants to be absolutely sure that there is nothing else that could be causing this issue before considering surgery. The pediatric team has ruled out that there are any issues with her airway. Today they ruled out that there is anything wrong with her lungs, but  Pulmonologists (lung doctor) would like her to undergo a sleep study for apnea.

There are two kinds of apnea. The"obstructive" sleep apnea common in adults is a result of there airway collapsing while they sleep. The "central" apnea the doctors will be looking for in Faith is different in that it is a result of the brain's control center sending the wrong signals regarding the carbon dioxide levels in her body. If this is the case, the problem could potentially be fixed by medication and no surgery would be required at this time. This study will be done sometime this week.

If the result of the study is that Faith does not have apnea and there are no other potential cause for the low oxygen levels, the neurosurgeon will then have to consider performing the decompression surgery. This surgery is the only way to medically assist in relieving the pressure off of her brain stem. The only other option is to send Faith home on oxygen and wait for her to grow. Her skull getting bigger might provide her brain stem the room it needs on its own. The neurosurgeon would then reassess her at a later time to see if the surgery would still be necessary.

Thanks for checking in.

Oh yeah and Im sure most of you are aching for some more here you go.


  1. Thanks so much for the update. Faith and all of you remain in our prayers. peace, Aunt Stephanie, Uncle Les and the peeps!

  2. Thanks for the pictures, she looks lovely in lavander! Praying for you guys!

  3. She is a beautiful little girl. I am praying for you and Faith daily. Sending love and hugs.