🙏update: emergency brain surgery successful 🙏
Hayden was released from the hospital Sunday after recovering from the least invasive shunt surgical option he had. His brain pressure is good and his headaches seem to have subsided.
Background: Hayden has had regular MRIs of his brain and spine from the last two spine surgeries this year. Both neurosurgeons at each surgery, as well as radiologists, had reviewed the images and said his brain shunt was fine and operable earlier this year. We have told the neurosurgeons about his headaches and two neurologists about our concerns. The remedy was to increase his pain meds as we thought it was part of his epilepsy. Hayden's shunt is nearly 13 years old. Statistically, there isn't much data on shunt life beyond 10 years so we are once again in uncharted water for longevity and lifespan of the components: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3584674/
A brain shunt can fail in three of the parts, the long tubing into the abdomen, the valve at the base of the skull or in the catheter into the brain. Each has its own issues. Hayden's was only replaced into his brain. All other components were left and we hope they continue to do their work.
Timeline
Here is my account of the events that took place over the past several days
Thursday: Got a call from our home nurse Christine that Hayden was screaming in the bathroom and that the school nurse and staff were very concerned....this has been going on for months...I then asked her to ask Hayden if he wanted to come home or stay for his holiday party. Since he said come home, I decided to pick him up from school...like I said, intermittent headaches coming on without any regularity with screaming lasting for several minutes to several hours and happening throughout the night.
I called our neurosurgery office and spoke with the NP who said to go to the ER as their next appointment for images wasn't until February. Since he had vomited several nights ago in his sleep, that was our one deciding factor to go to the hospital.
I decided Hayden had suffered enough and the trauma of the ER warranted a check-up as we needed more imaging and some answers, so I drove him immediately from school to the ER of our Dell Children's' Hospital.
After a CT scan and several x-rays, they said the ventricles had only increased slightly and that the images were inconclusive. I continually asked for more tests through nuclear imaging to see if there was a block in the shunt that was causing the issue? I was relentless as Hayden kept screaming in pain. The staff suggested keeping him overnight for observation. I held firm that I would not stay overnight to the tune of $10K+ just for observation when we have home health nursing that can do the same thing. I said unless they could guarantee that we would get a "shunt flow" study...This is were I am predicting they have me labeled as an AMA (against medical advise) difficult parent...that we would go home.
We agreed upon the shunt flow study and we were then admitted. Hayden ate a great dinner and went to sleep but woke up with more headaches on and off. The neurosurgeon on call, had never met us, nor did he know anything about the medical complexities of the previous 27 surgeries. To say that I was reluctant about turning my child over is an understatement when thinking about brain surgery with a stranger.
Friday: I called our neurosurgeon in Houston to ask if we could have a medical transport for "Continuity of Care" due to possible unforeseen medical complexities that could arise. He was reassuring saying that if the issue were simply the shunt, he was confident that it could be handled by most any neurosurgeon as it is the most common procedure. He was also concerned about the length of time in transport due to his symptoms.
After the consult with Houston, the on-call neurosurgeon secured the operating room within 2 hours. Hayden's pain was then becoming unbearable again as we waited for the surgeon and OR to be ready. The procedure took an hour to replace.
He stayed overnight when he woke with a fever and had to wait 24 hours before he was released.
Saturday: I went home to be with his siblings Garrett, 7 & Hanna, 14. They continued to pray for their brother and were very pleased that their brother was getting help from the hospital. Medical emergencies take a toll on the whole family and especially the siblings that are left behind. Hanna had cried thinking that Hayden was overreacting and not taking care of himself by drinking enough water. She felt guilty for then being exhausted by his illness. I spent some special time with my other two feeling the comfort of the Spirit telling me Hayden would be OK.
Hayden ate and felt good all day.
Sunday: Released from the hospital to start his first Christmas vacation with the custody of his father.
I was overwhelmed by the supportive prayers that were offered on Hayden's behalf that got him through this difficult time. Thank you for all of those posts on Facebook. They were encouraging and sent positive healing energy his way.
Thursday Facebook Post:
Perseverance over pain
Faith over fear
”God grant me the serenity to accept the things I can not change, the courage to change the things I can, and the wisdom to know the difference.”
Today was Hayden’s special 🎄celebration at school so he got all dressed up in Christmas Buccee’s gear only to go to the ER. After nearly a 13 year life, today we are blaming Hayden’s shunt, for possibly giving him screaming unbearable/terrible headaches.
🧠💣🤯🔥Hayden was born with a condition called congenial hydrocephalus. It means fluid on the brain that creates pressure on the brain tissue.
He has a ventriculoperiteneal (VP)brain shunt, a long plastic catheter that was drilled into his brain and drains into his belly. We have been reluctantly awaiting this moment of eventual failure.
He has undergone a CT scan, and several X-rays. It's our first time here for neurosurgery since our beloved surgeon, Timothy George, passing last year. We don't know what the reason is but we are trying to figure this unbearable headache pain out.🤯🧠💣🥊🔥🙏
🧠 Here is a lesson on hydrocephalus:
The body continuously produces CSF, which is naturally circulated and absorbed. Hydrocephalus is the blockage of this cycle, leading to fluid buildup, and the most common treatment is surgically inserting a shunt, notes the National Institute of Neurological Disorders and Stroke. “This system diverts the flow of CSF from the CNS (central nervous system) to another area of the body where it can be absorbed as part of the normal circulatory process,” it notes.
A shunt is a study plastic tube, but they are “imperfect devices,” notes the source, which warns a shunt can carry complications of its own. They are prone to mechanical failure, and can lead to infections and obstructions, it adds. When this occurs, further surgery may be required to repair the unit.
#protectTXfragilekids #bucees #healthcare #neurosurgery
