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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Tuesday, March 5, 2019

Pre-Op

We are back from a much needed week and a half vacation in Florida (see pic) and reality of this upcoming surgery and hospital stay is setting in!  I never made it to the "nesting" phase in my pregnancies because Morgan came so early unexpectedly and again went on bed rest with her brother at 26 weeks but I imagine this is similar!  Trying to get everything taken care of at home I possibly can in advance and preparing to spend my weekend meal prepping, errands, etc (in between school parties, hockey and music lesson of course)!
We got up bright and early this morning for her pre-op appointment.  She is healthy and cleared for sedated MRI & Shunt tapping this Thursday morning and for surgery next Wednesday.  Keeping her healthy in this brutal MN winter over the next week now is the challenging part!  Will post an update after Thursday, I am bit curious/worried about her shunts function so this should be interesting but as we discussed with her neurosurgeon they would be unlikely to make any changes with them at this point anyway if she is not symptomatic. 
Next Tuesday afternoon we are scheduled at Gillette's in St Paul where she will have her surgery with OT, Childlife, Extremities fittings, tour etc.  We received a preparation package in the mail with Dyna-Hex CHG solution we will have to bathe her in Tuesday night and Wednesday morning to prevent infection.  Her surgery is scheduled for 1:15pm on Wednesday and should take 3-4 hours (we have to be there at 11:45 am) and unfortunately we could not get the morning slot so will be trying to keep her occupied all morning without food or water- wish us luck on this ;)




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3 comments:

  1. Avram's Parents (Jose & Nancy)March 7, 2019 at 8:25 AM

    Our thoughts are with you and Morgan. Avram speaks of her at home. We hope all went well yesterday.

    ReplyDelete
  2. Tina MischkaMarch 7, 2019 at 3:56 PM

    Tatum’s Parents (Tina & Rodney)
    Jessica, thank you for sharing. Last night Tatum and I prayed for Morgan. We will continue to pray for her prep and surgery. And that you will be in good hands with her surrounding doctors

    ReplyDelete
    Replies
    1. Tina MischkaMarch 7, 2019 at 4:48 PM

      Jessica, I have also shared with the 'Mom's in Prayer' group at LODL. Looking forward to hearing the outcome next Thursday!

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