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, March 13, 2019

Post Op

Surgery started a little before 3:30 pm and they called with an update about 15 mins in, then again at 5pm to say everything was going well and they were about half way through.  At 6:40 they let us know they were closing and her neurosurgeon, Dr Petronio, came out to speak with us probably about 7:30pm and said she did great and all went as planned!  A LONG 4 hr surgery!  The procedure involves identifying which nerve rootlets are causing the spasticity using electrical stimulation and he was able to cut about 37% of her nerve rootlets which is right in the range he expected. Her incision is about 3-4 inches in mid-lower back but covered with a bandage.  She had minimal blood loss and did great breathing etc.  He talked to us for a while regarding the longer term benefits, temporary tingling in her legs, and discussed her recovery time and time to get back to baseline (~6 months), etc.
It took a while to get back to the PACU but we finally got to head back and she was still very sleepy and woke up a few times crying and in a lot of pain.  She kept asking us to take her shoes off (but wasn't wearing any of course) so thinking her legs/feet were maybe tingling or painful- taken care of with a couple of extra doses of valium which made her very slow to wake up and required a longer time in the PACU.  I believe she is on some form of morphine also for the pain.  We made it up to her room in the rehabilitation unit around 10:30pm, got her all settled and she is now heavily medicated to keep her comfortable and sleeping peacefully.
It was long day but thank you again to everyone for all of the thoughts and prayers, texts & messages!

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1 comment:

  1. MelanieMarch 14, 2019 at 2:58 PM

    Keeping you all in our thoughts!! So glad she was a rockstar during surgery!!
    Love,
    Mel & Pete Cermak

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