My Journey with hydrocephalus and Cerebral Palsy

Morgan Grace was born 3 1/2 months early on Aug, 21, 2012 weighing just 1 lb 7 oz and 13 inches long. Morgan was hospitalized at Children's Hospital NICU in Minneapolis, MN for 108 long days. During this time she encountered many medical challenges common to "micro preemies" but most devastating was to hear she had suffered from grade III/IV Intraventricular hemorrhage (IVH / brain bleed). We were told she may never walk or talk and they would not be able to tell the severity of the damage until she is older. The IVH resulted in Hydrocephalus, a condition she will have for life. At two, Morgan was also diagnosed with Cerebral Palsy.

I have found it very difficult to find information online - stories and information on hydrocephalus, shunts and people's experiences - so decided to write this blog to share what we have been through. I hope some day that Morgan can take over writing from her perspective. More importantly I hope maybe it can shed some light for other hydrocephalus and Cerebral Palsy patients and families. We welcome comments and questions.


From Wikipedia, the free encyclopedia:

Hydrocephalus is also known as "water on the brain", is a medical condition in which there is an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, tunnel vision, and mental disability. Hydrocephalus can also cause death. It is more common in infants, although it can occur in older adults.
The cause of Cerebral Palsy is a brain injury that occurs while the brain is developing. As a result of the brain damage during brain development a child's muscle control, muscle coordination, muscle tone, reflex, posture and balance can be affected.

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Wednesday, September 10, 2014

monitoring


We woke up early to meet with neurosurgery when they were on their rounds.  They reviewed the scans and spoke to us about what their concerns are and put in orders to have stomach ultrasound done to look closer at the suspicious area for cyst/fluid buildup.  Apparently an infection can cause cyst to form near the tubing and cause fluid build up, another uncommon issue with shunts.  Typical symptoms would include bulging of the belly and constipation- neither of which Morgan had.  Even though Morgan usually likes to show her “button” she was not that excited about a stranger rubbing the jelly over her stomach and was a bit traumatic to get through.  Great news we found out shortly after is that there is no fluid buildup and they do not believe any issues with the shunt line.  Bad news is that they do want her to stay overnight again just to monitor.  They are not convinced her vomiting is just a “bug” at this point because she had no fever or other symptoms and very similar to her previous shunt revision behavior.  
 
They let her start eating again so we started with some dry cereal and water which she did fine with and then ordered her breakfast- she held everything down.  The rest of the day Pat and I took shifts going to get work done and keeping Morgan occupied & playing. They finally got us a room on the 6th floor (out of ER) that afternoon and Morgan was pretty happy playing with toys in the crib, eating well and holding down her food. Overall it was not a bad day for being at the hospital.

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