3 days after change in shunt setting...we are having a great summer day swimming in my brother & sister in laws swimming pool, grilling dinner, etc. and suddenly Morgan wants to lay down- I could tell she was getting a headache again. She was laying on the floor in their living room for a few minutes and suddenly starts crying and vomiting :(. Quickly packed up our things and headed to the hospital!
We went to St Paul Children's ER for the first time (instructed by neurosurgeon when we called on the way)- thankful for a quiet night there and fast service. She seemed to be fine by the time we got to the hospital but after several days of her with bad headaches, lethargy and now vomiting we thought best to get her checked. She went in for limited brain MRI again - what an amazing staff there that had her laughing and watching Frozen during the MRI! The ER doctor came in and reported the scans were still concerning and Dr Petronio was on his way in. When he arrived he had reviewed the MRI and said actually that they looked better- her lateral ventricle size increasing which is what he wanted to see. He was also confused and concerned about her symptoms but said sometimes it takes patients a week or so to adjust to the new changes. When I asked if it was normal to have these afternoon spells he sort of laughed and said "nothing is normal with hydrocephalus/shunts"...hmmmm, well that's comforting but so true.
We talked for a while about what to do but in the end he suggested leaving the setting as is and just watching a few more days- hated to reset again before we give her body a chance to adjust. He did advise we stay the night at the hospital for monitoring so we transferred up to a room and got settled about 11pm, hoping all goes well and we can get out of here tomorrow morning early! Morgan was not wanting to sleep in the scary hospital crib by herself so ended up brining in a bed about midnight and I curled up in there with her :)
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.
No comments:
Post a Comment