The morning after Christmas and I was cleaning stuff up, putting gifts away, just finished breakfast with Morgan, etc. when she started vomiting profusely. I immediately called Pat and asked him to get home (he was working) and called neurosurgery. They advised us to head into Children's ER to get head scans. Still her fontanel felt & looked fine but just glossy eyes, tired and vomiting and since the pediatrician couldn't find any illness it is quite possible something is not right with her shunt.
We got her admitted into the ER and brought her down for CT Scan & X ray. I am almost 14 weeks pregnant so I couldn't go in with her so felt terrible but Pat was able to go and be with her. Having scans is not fun- she typically cries hysterically through the whole thing and its difficult for them to get the photos they need because she won't be still.
After her scans were completed the doctor working in the ER came in and told us her 4th ventricle was enlarged. I didn't want to believe it but the neurosurgical team came in shortly after and confirmed. They said this is unusual but in some instances the lateral (1st and 2nd) ventricles stop "communicating" with the 3rd and/or 4th ventricles for whatever reason and causes CSF build up there even though her laterals were still draining fine with her current shunt (the shunt has not malfunctioned). Also why we did not see her fontanel bulging as a symptom.
They had two options to resolve this- either place a 2nd shunt directly to the 4th ventricle or place a tube from the existing shunt to the 4th ventricle so that it would function for the laterals and the 4th. They chose to do the latter, admitted Morgan to Children's PICU unit and scheduled surgery for the next day. Here we go again :(
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.
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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