Good read
http://neonatalresearch.org/2013/02/22/post-hemorrhagic-hydrocephalus-when-to-drain-the-ventricles/
Posts
Hart Senate Building
Have you ever sat down with parents and people with Rare/Neglected, conditions/diseases? One woman here created a foundation called "Syndromes without a name". Learning so much from one another!
A cousin's perspective
My niece drafted a great story and nomination for Hawke as her hero, touching to say the least! When you hear the word hero, I bet you think of a guy with a cape on in a comic book or on TV? I did until my little cousin Hawke was born on May 14 th , 2008. Hawke and his twin brother Jaxon were first pronounced dead at birth. Doctors had to make many resuscitation attempts to revive both boys. Finally a fter twelve long minut es, Hawke took his first breath! Sadly Jaxon did not survive. During the resuscitation attempts, a hemorrhage formed in Hawke's brain causing Hydrocephalus. Hydrocephalus is a rare condition where there is an excessive amount of fluid that builds up in the brain. Doctors , then figured out they had needed to place a shunt in his head , to help drain the excess fluid that builds up in his brain. Unfortunately for Hawke, this would not be the only surgery he would have to have done. H e has had a total of fourteen brain surgeries due to shunt fail
On the plane behind me was a woman whom was flying to see her husband whom recently arrived from Afghanistan. She had two beautiful girls with her an infant and toddler. What a sacrifice our military families make every day. This infant has yet to see her dad in person. Thank you vets, active duty and there immediate family members! God please bless them!! Greatful.
Voice
Washington DC in the morning to learn how to advocate for hydrocephalus! Meetings with Congress members and staff this week.
Blessed
Our first stay at U of M Children's. Still evaluating our opinion on Nuerosurgery but the facility is amazing. Single rooms with bathroom and fridge. Awesome. Meanwhile many third work countries just place a child with hydrocephalus in a ward leaving hydrocephalus untreated leading to brain damage and death. We need breakthroughs !
Images
As a hydrocephalus parent when you receive a picture like this (a more obvious red spot in person on shunt area) you become concerned. Just monitoring, behavior is near baseline and he is playing, were watching and praying.
5 years
5 Years ago today - Carmen took a courageous step to save Jaxon & Hawke's lives. Our identical boys had Twin To Twin Transfusion Syndrome & required surgery to save their lives. The doctor was one of only a few in the nation that performed this type of fetal surgery. The doctor we were referred to (a separate story but a miracle in itself) was going inside the womb with a laser to burn blood connecting vessels the boys were sharing via the placenta. Carm had to remain awake during the surgery in order to make the surgery safer for the babies. I prayed and paced the hallway impatiently. It seemed like eternity to me and I was not even enduring the surgery. Prior to the surgery we watched the boys on ultrasound what seemed to be more than once a week. After 1hr 40min, the surgery was successful! The surgery caused pre-term labor and bed rest... that story is a separate chapter. Grateful to God for the gifts He has given us! www.tttsfoundation.org
The Hill
Traveling to Washington to meet with congress members and advocate for hydrocephalus in less than a week!
We have to make a difference
We need better treatment and a cure! This article is from the Pan America region, tragic a child can't even have a shunt replaced in a timely manner. "the son, Ahmed is still alive, eight months after his surgery, money to pay for other corrective surgeries is not available" http://leadership.ng/nga/articles/47992/2013/02/18/parents_hydrocephalus_children_complain_neglect.html
Educational read
"Hospital care for children with hydrocephalus in the United States: utilization, charges, comorbidities, and deaths" http://thejns.org/doi/pdf/10.3171/PED/2008/1/2/131?noFrame=true&
Learning more about the shunt & hydrocephalus
HAVE YOU EVER WANTED TO MEET A SHUNT “COMPANY” REPRESETNATIVE/SPECIALIST? HERE ARE SOME HIGHLIGHTS FROM OUR MEETING: The meeting yesterday with the shunt/medical device representative could not have gone better. The representative or “Nuero specialist” provided me with some great insight. Additionally he offered to help in any reasonable way possible. Some key points from the meeting included: What we call shunt failures are typically the proximal catheter (Catheter from the shunt to the ventricle) acquiring a buildup of protein and blocking CSF (Spinal fluid) flow from the ventricle to the shunt. This particular representative expressed how from his perspective it’s viewed as a condition or by-product of hydrocephalus, not necessarily a “failure of the product”. But stated that we need to have innovation that would prevent the buildup and stop the blockage. This representative named Frank showed serious passion for innovation and the patient (It was nice t
Weather
With all the weather changes Hawke has been doing fairly well! Most of you know weather changes can cause many symptoms in people with hydrocephalus.