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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Thursday, March 7, 2019

MRI & Shunt Tap

This morning we arrived at Children's ~7am for her sedated MRI & shunt tap.  The pictures are the before and after the IV placement, the during was a bit traumatic!  They can never find a good vein and I try to warn them but got it in after multiple attempts and additional pain spray (that was a new one).  At least Morgan was able to find a good vein on her Hydrocephalus Bear, Boozle.

We brought her back for sedation kicking and screaming a bit and I held her as she dozed off.  The MRI took about an hour and I met with her neurosurgeon after and he tapped her shunts (insert needle into the shunt valve to pull Cerebral Spinal Fluid from in order to measure the pressures) and reset them after the MRI while she was still sleeping.
Her brain MRI shows stable and slightly decreased ventricle size which is great, her pressures are both measuring as expected which means the shunts are working as expected.  Could be a little low so if she starts to get more headaches we may increase the setting a bit. Her spinal MRI gave him a good picture of her spinal cord and he does believe he can do single level laminectomy at the conus which is least invasive and hopefully allows her to be on the shorter end of the recovery spectrum :)
Overall exactly the results we were hoping for her to be best case going into surgery and Dr Petronio reiterated he thinks she is going to see some very positive results from this.

Morgan needed a little bit of oxygen while waking up due to some congestion but nothing to be concerned about, just need to keep her healthy over the next 6 days!  Got her some food and water after and let her walk for a bit and she did really well and went into school this afternoon with only a bit of orange hair (residual from Betadine)!

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1 comment:

  1. Carolina GeisslerMarch 11, 2019 at 7:08 PM

    Love these pics of Morgan! She looks cheerful! I hope everything goes well tomorrow. I'll be praying for her :)

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