CCHMC Day 23, October 13, 2010

It is now day 23 in the hospital and I must say it has been a true experience.  Gabby has been introduced to many new physcians.  I met a doctor yesterday and I must say it is really scary that he is responsible for teaching our future doctors of the world.  He came and met Gabby yesterday and was interested in her story as to what brought her to the hospital.  Well to make a long story short, I filled him in on her spasms and how she had a 104 temp and was rushed to the ER and was treated for all kinds of things including seizures.  He made a comment in regards to children needing to have a brain to have a seizure.  Aproximately 75% of children with Hydranencephaly do in fact have seizures.  They are more difficult to diagnose then cortical seizures due to the fact that EEG's aim more towards reading the cortex of the brain.  In a child like Gabby, seizures occur in the brainstem and are usually more difficult to treat than cortical seizures.  Its amazing, I really don't mind the fact that doctors don't understand much about Gabby's condition.  What I do mind is when they make inconsiderate remarks about a disrorder they know nothing about.  I wish doctors would just be more open to listening to the parents when it comes to their child.  Learn by observing the child, don't always rely on those textbooks.  Anyways, enough of the venting.

Now on with Gabby.  She continues to have 20 cc's of fluid taken off every 24 hours and she responds well afterwards.  As of right now, it looks as if all infections are clear.  They have been adjusting her meds and her formula to better meet her needs.  She continues to refuse to eat by mouth so we have to put her feeds in her tube.  I have been doing most of the feedings.  I try to offer her the bottle by mouth, but she is just not interested.  We are hoping that this is temporary and that she will decide to take the bottle once she gets home.  I do know that upon discharge they will release her home with a feed tube in place.  The feed tube that is being used is the same type when she was newborn.  It is called an N-G tube and is placed in your nose and goes down your throat into your stomach.  These are not surgically placed as the feed tubes that go directly into the stomach.

Gabby has been more alert the past two days and I believe it has to do with the fluid being removed and her getting two good days of nutrition.  We are looking forward to her getting her shunt and hope for her to be home soon.

Love to all and thanks for continuing to pray and support our little miss Gabby