Help Nico fight meningitis
Donation protected
A note from Niko's mom:
In January, our three year old son, Nikolai (everyone calls him Niko-Bear) fell and broke his nose. The Emergency Room physician excitedly informed us that the Xrays showed a clean break, and something "cool" (his words): a Chiari malformation. He explained that the lower part of Niko's brain was hanging out of his skull and into the spinal canal. He referred us to a neurosurgeon.
The consult went well, and we were told that many people live with this condition undetected all their lives. Just to be safe, doctors would take some scans and monitor his condition over time.
Our brave boy was sedated for a series of MRI scans to establish his baseline degree of malformation. We arrived at our follow up appointment with the expectation that this was the end of the story. Instead, the physicians met us with questions. Does he snore? Yes... he's seen an ENT specialist for snoring. Does he choke on his drinks sometimes? Yes... we keep telling him to slow down when he's drinking from his sippy cup. Does he have delays in speech and coordination? Yes... but the pediatrician said that these delays were normal for a third child.
As we explained away every symptom, the mood of the appointment shifted. The neurosurgeon told us that the MRI showed a much worse chiari than expected. Coupled with our answers, it was clear that Niko-Bear's spine and cerebellum were being compressed. The condition would worsen as he aged and could cause serious damage to his central nervous system. The solution was surgery.
On May 2, 2019, Niko-Bear had brain surgery (a laminectomy and decompressive craniectomy). Basically, the hole at the base of the skull was widened, and some of the spinal bones were shaved down to make room for his brain. After a couple of days in the hospital, we scheduled a 6 week follow up and got discharged. He was prescribed pain medication and a very strong steroid that he would be weaned off of over 10 days. This process is called a "steroid taper".
Back at home, he was (understandably) cranky and lethargic. We thought that it would wear off as he healed. Instead, his condition declined. Less than a week post-OP Niko woke up with a headache, fever, and vomiting. We rushed him to the ER, and he was admitted for observation. Doctors treated the fever, gave him fluids, and preformed an MRI. His condition improved slightly. The MRI showed brain swelling consistent with post surgical irritation. The doctors stated that some kids need extra help to reduce swelling. Another 10 days of steroids should have him good as new. He was discharged again.
Unfortunately, Niko-Bear's condition did not improve much. Within a week, we were back in the ER for vomiting, headache, and fever. Again, he was admitted, given fluids, and taken to MRI. Some tests pointed to a possible infection (his white count was very high). He was being prepped for a lumbar puncture when the MRI results came back. They showed another increase in swelling. The doctors decided that he was likely suffering from intracranial pressure and not infection. The lumbar puncture was cancelled, and he was discharged with steroids that would decrease over 21 days.
For the next two weeks, we saw our sweet boy deteriorate further. His head ached incessantly. He was exhausted. His body swelled. Perhaps most painfully, we saw his mischievous, wild, and joyful personality disappear. He spent his time sleeping, crying, or staring into space. The little boy that loved everything Thomas The Train and Paw Patrol was completely gone. He didn't laugh or play anymore. We were told that steroids and surgical discomfort affect kids
differently. We needed to maintain treatment with the steroids and pain medication.
On Friday June 7, we awoke to a familiar scene. He had a fever and extreme headache. The doctors told us to increase his steroids over the weekend. They scheduled another MRI for Monday June 10 at 9am. His condition worsened over the weekend. By the time we arrived at the hospital for the MRI, he was vomiting and extremely lethargic. The nurses fast tracked him through MRI and sent us directly to the neurosurgeon's office. The results were terrible. There was a large increase in CSF and pressure on the brain. Our baby had hydrocephalus. Steroids could not fix this. He would need a shunt. Two hours later, he was wheeled into his second brain surgery.
Seeing Niko after shunt surgery was shocking. He had two new incisions on his head and one on his belly. He had a large knot shaped bulge on the side of his head. We were told that this would cure him of any more problems. His personality and energy should return quickly now that the intracranial pressure was gone. Two days after surgery, he was discharged with pain medication and a final round of steroids. We were so excited that this painful situation was finally over.
Sadly, Niko's health didn't improve. One week after surgery, on June 17, he was readmitted to the hospital. He was still lethargic and his fever had hit 102. After testing the CSF in his shunt and his blood, everything pointed to an infection. Unfortunately, none of the tests could pin point what kind. He was immediately moved to the ICU. The difficult decision was made to remove his shunt and begin treating for meningitis. On June 20 Niko had his third brain surgery to remove his shunt and install a drain that would remove his excess CSF (called an EVD). This would buy the time needed to diagnose his exact ailment.
After relentless testing, the lab work showed that a rare bacterial infection called Mycobacterium fortuitum is causing his meningitis. On top of that, the extended use of steroid medication has caused his adrenal glands to stop working. He will have to stay in the ICU for a couple of weeks of antibiotic therapy. After that, we will begin to discuss options for the shunt replacement (his fourth brain surgery).
Niko is still in serious condition, and his road to recovery is very uncertain. The doctors don't have an exact treatment for this situation, so much of it is trial and error. The goal is to eventually get him out of the ICU and back home to recuperate. He will need antibiotic therapy and steroid therapy (to retrain his adrenal glands) for the next 3-6 months. A home nurse will teach us to care for his central line and to administer his medications.
The last couple of months have been painfully difficult on our family. To watch your child suffer is unbearable. You feel absolutely helpless. It's been especially difficult on Niko's five year old brother and seven year old sister.
The emotional toll has been great, and the financial toll has been nearly as bad. Niko's dad, Billy, is the sole provider. After five hospitalizations and three surgeries, it's been difficult to make every end meet. Often, we have to decide to skip paying a bill or forego Niko's father being present at a procedure. This last surgery and hospitalization came as a complete surprise, and again we had to choose between the bills and the baby. His dad made it back just in time to hold him before surgery.
There are many more difficult procedures ahead for our Niko-Bear. He (and his siblings) need both parents right now. Unfortunately, the world doesn't stop when your baby is sick, and his dad will be going back to work. It's difficult to share this painful journey with everyone. Pride makes it even harder to ask for help, but we are asking. Any assistance (and especially prayers please!) Is so greatly appreciated right now
Thank you, Amanda (Niko's mom)
In January, our three year old son, Nikolai (everyone calls him Niko-Bear) fell and broke his nose. The Emergency Room physician excitedly informed us that the Xrays showed a clean break, and something "cool" (his words): a Chiari malformation. He explained that the lower part of Niko's brain was hanging out of his skull and into the spinal canal. He referred us to a neurosurgeon.
The consult went well, and we were told that many people live with this condition undetected all their lives. Just to be safe, doctors would take some scans and monitor his condition over time.
Our brave boy was sedated for a series of MRI scans to establish his baseline degree of malformation. We arrived at our follow up appointment with the expectation that this was the end of the story. Instead, the physicians met us with questions. Does he snore? Yes... he's seen an ENT specialist for snoring. Does he choke on his drinks sometimes? Yes... we keep telling him to slow down when he's drinking from his sippy cup. Does he have delays in speech and coordination? Yes... but the pediatrician said that these delays were normal for a third child.
As we explained away every symptom, the mood of the appointment shifted. The neurosurgeon told us that the MRI showed a much worse chiari than expected. Coupled with our answers, it was clear that Niko-Bear's spine and cerebellum were being compressed. The condition would worsen as he aged and could cause serious damage to his central nervous system. The solution was surgery.
On May 2, 2019, Niko-Bear had brain surgery (a laminectomy and decompressive craniectomy). Basically, the hole at the base of the skull was widened, and some of the spinal bones were shaved down to make room for his brain. After a couple of days in the hospital, we scheduled a 6 week follow up and got discharged. He was prescribed pain medication and a very strong steroid that he would be weaned off of over 10 days. This process is called a "steroid taper".
Back at home, he was (understandably) cranky and lethargic. We thought that it would wear off as he healed. Instead, his condition declined. Less than a week post-OP Niko woke up with a headache, fever, and vomiting. We rushed him to the ER, and he was admitted for observation. Doctors treated the fever, gave him fluids, and preformed an MRI. His condition improved slightly. The MRI showed brain swelling consistent with post surgical irritation. The doctors stated that some kids need extra help to reduce swelling. Another 10 days of steroids should have him good as new. He was discharged again.
Unfortunately, Niko-Bear's condition did not improve much. Within a week, we were back in the ER for vomiting, headache, and fever. Again, he was admitted, given fluids, and taken to MRI. Some tests pointed to a possible infection (his white count was very high). He was being prepped for a lumbar puncture when the MRI results came back. They showed another increase in swelling. The doctors decided that he was likely suffering from intracranial pressure and not infection. The lumbar puncture was cancelled, and he was discharged with steroids that would decrease over 21 days.
For the next two weeks, we saw our sweet boy deteriorate further. His head ached incessantly. He was exhausted. His body swelled. Perhaps most painfully, we saw his mischievous, wild, and joyful personality disappear. He spent his time sleeping, crying, or staring into space. The little boy that loved everything Thomas The Train and Paw Patrol was completely gone. He didn't laugh or play anymore. We were told that steroids and surgical discomfort affect kids
differently. We needed to maintain treatment with the steroids and pain medication.
On Friday June 7, we awoke to a familiar scene. He had a fever and extreme headache. The doctors told us to increase his steroids over the weekend. They scheduled another MRI for Monday June 10 at 9am. His condition worsened over the weekend. By the time we arrived at the hospital for the MRI, he was vomiting and extremely lethargic. The nurses fast tracked him through MRI and sent us directly to the neurosurgeon's office. The results were terrible. There was a large increase in CSF and pressure on the brain. Our baby had hydrocephalus. Steroids could not fix this. He would need a shunt. Two hours later, he was wheeled into his second brain surgery.
Seeing Niko after shunt surgery was shocking. He had two new incisions on his head and one on his belly. He had a large knot shaped bulge on the side of his head. We were told that this would cure him of any more problems. His personality and energy should return quickly now that the intracranial pressure was gone. Two days after surgery, he was discharged with pain medication and a final round of steroids. We were so excited that this painful situation was finally over.
Sadly, Niko's health didn't improve. One week after surgery, on June 17, he was readmitted to the hospital. He was still lethargic and his fever had hit 102. After testing the CSF in his shunt and his blood, everything pointed to an infection. Unfortunately, none of the tests could pin point what kind. He was immediately moved to the ICU. The difficult decision was made to remove his shunt and begin treating for meningitis. On June 20 Niko had his third brain surgery to remove his shunt and install a drain that would remove his excess CSF (called an EVD). This would buy the time needed to diagnose his exact ailment.
After relentless testing, the lab work showed that a rare bacterial infection called Mycobacterium fortuitum is causing his meningitis. On top of that, the extended use of steroid medication has caused his adrenal glands to stop working. He will have to stay in the ICU for a couple of weeks of antibiotic therapy. After that, we will begin to discuss options for the shunt replacement (his fourth brain surgery).
Niko is still in serious condition, and his road to recovery is very uncertain. The doctors don't have an exact treatment for this situation, so much of it is trial and error. The goal is to eventually get him out of the ICU and back home to recuperate. He will need antibiotic therapy and steroid therapy (to retrain his adrenal glands) for the next 3-6 months. A home nurse will teach us to care for his central line and to administer his medications.
The last couple of months have been painfully difficult on our family. To watch your child suffer is unbearable. You feel absolutely helpless. It's been especially difficult on Niko's five year old brother and seven year old sister.
The emotional toll has been great, and the financial toll has been nearly as bad. Niko's dad, Billy, is the sole provider. After five hospitalizations and three surgeries, it's been difficult to make every end meet. Often, we have to decide to skip paying a bill or forego Niko's father being present at a procedure. This last surgery and hospitalization came as a complete surprise, and again we had to choose between the bills and the baby. His dad made it back just in time to hold him before surgery.
There are many more difficult procedures ahead for our Niko-Bear. He (and his siblings) need both parents right now. Unfortunately, the world doesn't stop when your baby is sick, and his dad will be going back to work. It's difficult to share this painful journey with everyone. Pride makes it even harder to ask for help, but we are asking. Any assistance (and especially prayers please!) Is so greatly appreciated right now
Thank you, Amanda (Niko's mom)
Organizer and beneficiary
Jessica Borrero
Organizer
Virginia Beach, VA
Amanda Webster
Beneficiary