Started the day early to prepare. 8am they had to stop Morgan's feedings and switch to clear liquids/saline. She had to receive another blood transfusion this morning also before surgery since she was borderline anemic - I really don't like this unless absolutely necessary but they assured me it was. The Neurosurgeon came to speak to Pat and I - he explained the procedure, how it will help and is required now before the fluid build up causes further brain damage. We signed all of the forms and he was on his way.
Waiting for surgery for several hours is the worst. To pass the time away we each did kangaroo cares (held her skin to skin) with Morgan since we probably wouldn't be able to hold her after surgery for a while. The anesthesiologist came in to explain how they would re-intubate her and the localized anesthesia she would be given. Depending on how she did they may extubate before they bring her back up from recovery or might have to leave it in for a while until she is breathing again on her own. Then I just sat by her isolette and talked to her "coaching" her on how to breathe strong when she is done & hopefully not require heavy pain medications and sedation afterward so she can start eating again soon!
OK I lied, waiting for surgery to start isn't the worst, waiting for her during surgery is! The procedure itself I believe took only about a half hour and we waited about 2 hrs from when she went down to when she was brought back up from recovery to her NICU room. The surgeon came out to the surgery waiting room after it was completed and let us know it went "very well". Whew, what a relief. The rest of the evening she was on Tylenol & morphine and slept peacefully. She was still intubated and IV in so looking very fragile again but doing great.
I realized this evening what a sense of relief I am feeling. I think I have worried and hoped and prayed so much for the hydrocephalus to resolve on its own and now that the reservoir surgery is done we can accept this as a solution and move on to focus on her growth to get her healthy and home.
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.
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