Medical Updates

Here is a recap of what has happened since we brought Bella home on March 21, 2012.

1. Mid April Bella had a reflux/apnea event that we took her to the ER to be checked out.  That ER visit turned into a 5 day hospital stay.  During that time it was determined that Bella's right lateral ventricle was enlarging.  After much discussion we decided to put in another subgaleal shunt.

Within a week or 2 she went from looking like this to:
 
The right shunt wasn't working properly.  So we decided to remove both shunts and let her brain see what it would do.  The only problem was that the huge pocket of fluid kept reforming on the right side of her head.  At that point we were talking a VP shunt.  Our fabulous neuro. Dr. here found out that we would be willing to go to Salt Lake City verses Denver if we needed to do something with Bella that couldn't be done here in Grand Junction.  Our dr. got in touch with a great neuro dr. in Salt Lake and it was decided that the best course of action was to give Bella every opportunity to avoid a permanent shunt.  So off to Utah we went.

 At Primary Children's hospital, Bella had the following surgeries:

1. Septostomy (connecting the right and left ventricles)
2. Endoscopic Third Ventriculostomy (ETV)
( Endoscopic third ventriculostomy is a type of treatment for some forms of hydrocephalus. It involves making a small opening in the floor of the third ventricle, one of the fluid-filled spaces within the brain, which opens it up to the space surrounding the brain. This allows cerebrospinal fluid to be diverted from within the ventricles to the area outside the brain.)
3. Endoscopic choroid plexus coagulation (tried to find a definition that I could understand, without any luck...so the "Becky" version...they burned off the doo dads inside the ventricles that make the spinal fluid in hopes that they could slow down the rate of production and allow Bella's head a chance to be able to absorb the fluid).  If you have time and are so inclined to research this, it is pretty interesting.
4.external ventricular drain (EVD), also known as a ventriculostomy, is a device used in neurosurgery that relieves raised intracranial pressure and hydrocephalus when the normal flow of cerebrospinal fluid around the brain is obstructed. This is a plastic tube placed by neurosurgeons and managed by ICU nurses and Critical Care Paramedics to drain fluid from the ventricles of the brain, and thus keep them decompressed, as well as to monitor intracranial pressure.  Before we left, this was removed.

SO, here we are 2 weeks out from surgery and Bella's soft spot is slightly swollen.  We went for a head ultrasound on Tuesday of this week and found that her ventricles are about 25% larger then when we left Primary Children's 2 weeks ago.  So we have talked about the VP shunt again.  Both neuro doctors have been in touch with each other, sharing information and the verdict is????  Wait!  Again, hurry and wait.  But they still feel that Bella has a good chance to avoid a shunt and want to give her every opportunity to "figure" things out.  We have a doctor's appt here in town tomorrow and a follow up in Salt Lake in 2 weeks. 

Will you join us in praying for peace and comfort.  Prayers that Bella will not be in pain.  We are ready to accept either outcome (shunt or no shunt) but we are having trouble being patient.  God is good.  We feel we have been led on this path for a reason.  Is it to help Bella avoid a VP shunt OR is it because through her the doctor can gain more knowledge to help a future child in Bella's situation?  We may never know, but we have faith that God knows.  We just need help accepting His time frame.  I am sure one day we will look back and say, "Oh, now I get it!"  In the mean time we are a bundle of nerves.

If you can believe it, this last picture is showing the right side of her head where the HUGE pocket of fluid was.  Yep, it has totally gone away.  Beautiful Bella!!!