We checked into Children's about 9am yesterday. It took a while to get situated but we are told we have the biggest/best room on the floor with a good view of the garden :).
She was not a fan of the blower which dries the glue for the electrodes to stick to her head (she freaked out and pulled several off on more than one occasion) so that was a fun couple hours just trying to get set up. The goal is just to monitor her with regular activity and they have this feeding to the front desk with video monitor on her also. We spent the rest of the day yesterday just hanging out- tv shows, movies, play doh, arts & crafts etc. At least had a decent night sleep since they are not coming in every couple of hours overnight like past hospital visits!
The Neurologist rounded this morning around 10 am and gave an update that her brain activity is looking fine. They are not seeing spikes in her parietal lobe, the "abnormal brain activity", that they have seen on the last two EEGs. So this is good and hopefully means her brain has "calmed down" over the last couple months which I think her behavior and lack of "episodes" shows. The problem with seizures, however, is you never know when they may hit so he was concerned they will likely crop up again and suggested prescribing an "emergency medicine" to have handy at home just in case. He described this like an electrical line in a house, the spikes are like the line "sparking" and you never know when or if it could start a fire (seizure). Meanwhile they would like to keep her one more night/day just to continue to monitor. Will discuss more tomorrow morning after more results.
She was getting very stir crazy this afternoon and wasn't allowed to leave the room, the monitor is plugged into the wall with a long cord so she could only walk around in the room :(. Thankfully Breannas Gift org/volunteers (breannasgift.org) came by with a fun mask craft and we were able to get the cord out to the hallway tables so she had fun doing that. A couple of hours ago they came through with a battery pack so she got about an hour in the kids play room also and doing much better now!
Updated pic from today
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.
Search This Blog
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment