×

Benny’s story

Jessica Howling Wolf

Twin Buttes

I am writing to you on behalf of our son Benny who is currently 5 years old and contracted West Nile in Aug 2016 and had survived what was told to us should have killed a boy of his age and with everything he went through; he should not be here. Also to share our son “Benny’s” survival story for the following reasons: to help those unaware of the very deadly virus, help advocate for a human vaccine for the West Nile virus, ask for help from anyone to set up a foundation to support families affected by the virus, and for West Nile research, also to help fight for accurate testing and reporting for people who are seen with meningitis/encephalitis.

Our mission is to not upset anyone or ask for pity, but to try and bring awareness, comradery with our sons story and survival, to let other know that are affected by this virus there we are fighting for correct and accurate treatment and reporting, also we are asking for help from anyone who can help us in this courageous challenge for a vaccine and fight for funding or set up a foundation for the vaccine and be a voice for the voiceless.

In August 2016 in the rual parts of Twin Buttes ND; our son Benny was a normal perfect little boy who loved to play outdoors, swinging on the tree swing, and spending time with his 5 other siblings, and listening to his grandmother read him night time stories. Benny was so smart and was preparing to start his schooling that fall. He was supper excited for the big yellow bus to finally come and pick him up.

On the weekend of August 26, 2016 Benny woke up with very red cheeks and had a slight fever, but nothing to slow him down. I had planned to take him to the clinic that morning at 9am (45 min drive from our home) to have him checked just to make sure it wasn’t anything serious. The appointment was routine, no signs of anything alarming to his pediatrician that morning and we went on our way to participate in the Hazen (ND) City wide rummage.

As the day went on Benny became more and more lethargic. the redness on his cheeks came back and had gotten worse. At that time it was 3pm in the afternoon and I decided to take him back to the clinic because he was so lethargic he could not sit up and support himself in the back seat and was burning up. We proceeded to the clinic and pediatrician was waiting for Benny. They swabbed his throat, and drew blood. I waited for the test results and Benny rested. Finally results come back and they came back normal beside the white cell count slightly elevated. Nothing the doctor seen that was necessary for prescribed medications. Dr sent us home and told us to have him rest and give ibprofen and Tylenol. Benny slept (he was twitching in his sleep, or what we thought was twitching)the whole time until the next day. He woke up around 8pm and was happy, lively, and off and running. I wanted to feed him because he slept and refused to eat the day before. He wanted to run around and play with his 3 sisters. Around 10:33 p.m. that evening he came to the room and told me and his dad he was tired and wanted to go to bed. So we got him ready and he laid next to me and his dad on our bed that night.

Next thing I know (4 a.m.) my husband is shaking me telling me to get up! Jessica, get up he’s seizing! I jumped up trying to catch my bearings and process it all in a matter of seconds. My husband picked him up in fire mans carry and took him on to our deck to see if the crisp cold would break his fever. Little did we know, it was way more serious than just a fever.

From the time we woke up to the time we arrived at the hospital (50 miles away) he seized for over 2 hours. My husband began to take control of the situation and somewhat calm me down to call 911. I was belligerent to the operator and wanted my son to stop seizing and for someone to help him. The operator tried to talk calmly and walk us through everything. The operator dispatched the local ambulance who could not serve us due to county lines, and the county ambulance that served us was on another call, so we had a ambulance dispatched from 70 miles away…which got lost on the way to our home. In the meantime Benny didn’t stop seizing but stopped breathing all together and we lost his pulse and heartbeat.

My husband began recesitation and Benny gasped for air and began seizing again. By then a off duty fireman heard the dispatch and came to our house from 20 miles away. He was not equipped nor was he much help, but he sure tried to do his best to give Benny air and give my husband a break during recesitation. We sat on our living room floor for 48 plus minutes waiting for a emergency vehicle to get him to the hospital. Finally the ambulance arrives and we load Benny up and is still burning up, so the paramedics placed ice around his body to help bring down his body temp. It was no help, he seized until he would stop breathing, and they would recesitate and get a pulse and he would start seizing again. On the way to nearest hospital 50 miles away, the ambulance driver got lost. We go down the road another 20 miles and a paramedic intercepts and jumps in the ambulance to assist.

The 2 paramedics start to argue about getting a airway or not…I yelled for them to stop and please just help my Son! As Benny seized his mouth filled with aspiration (saliva-thick) which then he inhaled into his lungs which was causing his airway to be blocked and him to stop breathing. At this time his mouth was clenched shut and they could not open it. This continued for another 10 minutes. I knew paramedics were feeling a bit overwhelmed at that time. We started pulling into the town of the hospital, then Benny flat lined and I panicked!

I started releasing all the straps on him and started to pick him up as we pulled into the ambulance barn of the hospital. I pushed open the doors to the ambulance and jumped out with Benny. The female paramedic grabbed Benny from me and ran with him inside the hospital. Just as she grabbed him he was completely lifeless and blue. I felt myself losing hope and faith, I felt I was going to bury my child, my baby, my son in that moment of seeing his poor innocent lifeless body. I ran with the paramedic behind screaming to anyone in the hospital who could hear “please, somebody help, he’s not breathing, my son is not breathing, please help him!”

Doctors and nurses began working on Benny trying to stop the seizures and injected 4 different anticonvulsant medication and to no avail did not stop the seizing. His temperature was 109 degrees upon arriving. The next thing they needed was to get a IV in him to see if that might work to administer the meds. He was seizing so bad they couldn’t get a vein because of the seizures and his rapid movement. They decided to drill a hole by his knee cap to get a main line directly to his marrow. It worked, they got a IV! The doctors on staff we were consulting with other doctors through another screen on the wall in Bismarck 2 hours away to help treat benny. After all possible measures were taken they dispatched air ambulance to bring another anti-convulsing med, and have him transported to Sanford hospital in Bismarck. When air medics arrived they administered the anti convulsing medication and he stopped seizing and slipped into a coma. Then they sedated him heavily and got him ready for transport for Bismarck.

We arrived in Bismarck and did a spinal tap immediately and scheduled a MRI that morning at 9 a.m. His results came back showing his entire brain was inflamed and severely swollen. After the sedation wore off Benny didn’t wake up and he was struggle to breath on his own and was then intubated. He also had very low brain waves on his 1st EEG test. The whole day his fever was 109 and never reduced no matter what doctors tried. They then decided to airlift him to Fargo children hospital.

When we arrived In Fargo they had everything ready for a spinal tap and administered more sedation medication and he remained on ventilator machine. We never left his side the whole 2.5 months of hospitalization. 3 days later the results came back and his results confirmed West Nile encephalitis.

Since there is no cure we had to wait for Benny to wake up. The next week he slowly started breathing on his own and they disconnected the breathing machine. He started waking up. I remember it very well because it was on my birthday Sept 11th, 2016. I got see my sons eyes and hold him without any wires and no machines. The same day doctors told us they wanted to place a feeding tube in him the next day. The next morning at 10 a.m. he goes for surgery under sedation but doesn’t wake up and goes into a coma. Doctors told us to prepare and start calling family and start making arrangements for our son’s last days. As at his bed side, thinking of all the things he will not get to do, see or experience, I remembered my husband telling me a dream he had of Benny. His dream was of Benny around the age of 12 standing by his grandpa Theodore “Benny” Stone. At that moment I said to my husband…“No, it’s not true Dennis, because you saw him when he was 12 years old.” He will live, he’s meant to survive.

From that moment on, I made a promise to Benny that I will do everything and anything to help him and anyone affected by this virus. The next month I worked with stretching his hands (spasticity) legs, arms, feet, fingers. Moved his legs, arms, finger, toes to music, sang preschool songs and read him every single day until his discharge. I refused to give up, or feel sorry for myself. I thought of Benny and became his voice and mind in the moments that were so hard, we questioned our faith, beliefs and self. Benny fought and is still fighting every single day to just speak a word, to express himself without help or guessing. We will continue to fight with him to be heard, and advocate for everyone affected by this deadly virus.

Benny now goes to therapy 3 times a week, to 3 therapies a day. Upon being discharged we were told by specialist Benny will never walk, talk, hear, and will have a severe learning disability. I do not believe this and Benny has showed us and his doctors it was not true. He has crushed his year goals in 6 months.

He still has severe seizures and around 20 a day. He has laughing seizures. Benny has overcome something that could have been devastating but is now becoming a person I never knew existed only in movies, a hero.

Thank you for your time and attention to this very personal matter. If you have any questions please don’t hesitate to contact me. We want to take something tragic and turn it into something helpful; Whether it be Benny’s story being shared, being advocates for a vaccine, setting up a national foundation for West Nile research, or helping our fellow American/ND people in fighting for accurate testing and reporting for people seen for meningitis/encephalitis.

Newsletter

Today's breaking news and more in your inbox

I'm interested in (please check all that apply)
Are you a paying subscriber to the newspaper? *
   

Starting at $4.62/week.

Subscribe Today