Wednesday, August 3, 2011

Update from last post...

Faith made it 3 weeks without passing out!! Then Sunday night she had another episode.  This time we are shooting for 4 weeks!!!!

The ENT appointment went really well, actually better then I thought.  Dr. Julie Wei said all positive things about Faith.  She said that her neck and trach site looked really good and really clean. Go team Pfeifer for keeping it so clean! :)  She also said she was going to scope her and I just looked at Dr.Wei and she said don't worry Faith taught me last time who's in charge. (last time faith turned blue and passed out) Dr.Wei went on to say she will be scoping her threw her tach.  She won't feel a thing that way.  It was really neat, I got to look in the scoop and see what she was talking about.  Dr.Wei said Faith's skin color and airway looked "gorgeous".  She thinks the larger trach is fitting well.  As she was looking in the scoop she also said that it looks like Faith has some what of a  floppy skin, which can be normal on some people.  She said it could be a possibility that the floppy skin could be covering up the trach when she is baring down.  Which would be like someone putting tape over your mouth and nose.  Which then would lead her to passing out due to no air/oxygen passing through.  That is just another theory but still no one knows for sure why she actully turns blue and passes out...

The OT appointment went really well too!  So fun to see faith getting a spoon!  She is getting thicken water.  Sounds boring but it is a great start to hopefully getting rid of the feeding tube!  Her at home therapy or practice before her swallow study is to have 5 spoons of thickened water every other day.  We don't want her to aspirate (the water go in her lungs instead of her tummy) the water.  We also put food coloring in the water so when we are suctioning her if we see the food coloring we know she is aspirating the water and will stop the the feeds and call the OT.  So far NO aspirating!! We all take for granite that our tongue knows what to do when we put something in our mouth, we are retraining hers. She can eat/drink with the trach.  The trach is down her airway or trachea and you swallow food/fluids down your esophagus.

Below is a picture of her with the blue thickened water and her spoon!  Here she is about 6 1/2 months old.

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