Please lift up Bennett and the Johnson family

Hello everyone, my name is John Salvatore and I'm fundraising for Bennett Johnson. A beautiful 5 year old boy who has come down with a very rare disease. He is the Son of Marlin and Laura Johnson. I know Marlin as his manager at World Wide Technology. When I heard the story of his son becoming ill, my heart broke. No parent should ever have to go through the events this family has had to endure. The Johnson family has set up a carrying bridge at https://www.caringbridge.org/visit/bennettjohnson Please visit this webpage for an up to date status of Bennett's progress. I have no idea how much money to raise, so please just do what you feel in your heart to help support this family and please lift up Bennett in your thoughts and prayers as warriors in his cause. Thank you.

I am copying Bennett's story as it was posted from the caring bridge.

https://www.caringbridge.org/visit/bennettjohnson

Journal entry by marlin johnson on December 8, 2022.

During the beginning of the last week of November, our younger two boys had started getting sick, but Bennett had full strength as we played in the snow and shoveled the driveway. It wasn't until Laura texted me while i was working the morning of December 1st that we knew Bennett was coming down with what the other boys had. Thursday he was uncomfortable with a fever. On Friday he kept getting worse, and by Friday night he was really sick with vomiting and fever.

Saturday morning (December 3, 2022) he seemed really sick as he was crying a lot and asked that i help him to the bathroom. This had been normal with Bennett so I didn't think anything of it. Bennett when sick will often asked to be carried like the younger boys. We turned on a TV show as both boys were sick and I proceeded to make breakfast. I found it odd that Bennett wasn't using words and cried louder than usual as I got off the couch. Odd but again not out of the ordinary. Bennett is dramatic, especially when sick, so I told him to use his words, and tell me what hurt. He couldn't, but he was drinking all the water and juice I put in front of him, so i didn't think anything of it.

At 1pm he took a turn for the worse, and started vomiting again, and really started to look bad, so I called Laura's cousin and ICU nurse Jenn and asked her thoughts. I told her about how our neighbor had similar symptoms just 2 weeks ago and went to the Maple Grove Hospital, was treated with fluids then sent home. I gave her the symptoms and she quickly noticed the odd behavior and had me perform some neuro tests on him. Bennett couldn't squeeze my fingers or move, and was non-verbal, so Jen suggested we take him to the hospital. And not just Maple Grove but down to Children's in Minneapolis in case anything was serious he would have to be transferred there.

I quickly packed, Bennett fell asleep in the car, and we made it down to the hospital. Right when we walked in to triage, Bennett threw up all over me, which I laughed off, but when I got him in a chair he looked awful, which had me worried. I just thought he was really dehydrated. We waited for 5 minutes when a nurse called us. He asked Bennett a few questions and took his vitals. Everything looked normal, but he could tell something was wrong. He rushed us to a room where a doctor came in 5 minutes later.

They took blood and did some tests right away. They originally thought he might be diabetic since they assumed he would be dehydrated. His tests came back that he wasn't dehydrated and he wasn't diabetic. We did find out he was positive for influenza A.

Next, we went in for a CT scan. Everything looked normal. Since he was wincing and in a lot of pain at this point we did an ultrasound of his mid section. I really thought we had found something, because he was wincing in pain so much, but they had multiple eyes look at what was completely normal.

We really started to get worried now. They informed us we would be there for the night and that we would schedule an MRI . At this point, Bennett was really struggling with pain. I spent countless hours Saturday night comforting Bennett through screams of pain and crying. He couldn't answer any of my questions and they seemed to upset him so much I just tried to comfort him.

They sedated him for the MRI and we awaited the results. We were consulted with neurosurgeons that suggested because of a cyst found in his brain, that he may be having seizures. They also thought the cyst was blocking CSF fluid in his brain and building up. They decided to do an EEG to check his brainwaves and to see if he was really having seizures. They came in to do the EEG and glued all of these nodules to his head and put him in front of a camera so that a neuro team could monitor his outbursts and check for seizures.

We were originally informed of Bennett having nodules or a cyst in his brain when he was in Utero. We had Bennett participate in a Brain study for a year and a half after his birth where they also noticed a cyst in his brain. We met with Neurologists to talk about the Cysts/Nodules and no one could say if they were normal or not. His child development seemed normal, so we forgot about it, until now.

So they monitored Bennett overnight on the EEG and from about 1am to 5am he had multiple episodes. After analyzing the data from the episodes, they concluded he wasn't having seizures. So the doctors were really wondering what was happening. They went back to the CT and MRI scans to see if there was something they missed. It was then that they noticed inflammation around his brain and thought that it might be Meningitis. To test for that, they had to do a spinal tap and test the CSF fluid for signs of Meningitis infection.

Once the spinal tap concluded the nurse was shocked by what the relief of pressure did to Bennett's cognitive ability. Bennett could better respond to questions, nod or shake his head yes/no, and nodded yes when the nurse asked if he was in pain.

The results of the spinal tap came back that Bennett didn't have meningitis but they did find the influenza virus in the spinal fluid. The doctor had an answer and informed us that Bennett had encephalitis. The virus was causing inflammation in his brain.

There was an additional CT scan done later on Sunday which showed no difference from the previous one the day before. He was supposed to have an MRI on Monday to check for changes, but his neuro scores were improving with his ability to wiggle his toes and give a thumbs up, so they decided to wait until Tuesday to do the scan.

Monday was hard but Morphine helped and we got through the day. Tuesday we did another MRI and hopefully awaited the results. We scheduled friends from church to join us that evening, to lay hands of Bennett and pray for him. We were hoping for decreased pressure, no damage, and no swelling in the brain from the MRI.

I'll never forget the diagnosis even though I'll never be able to pronounce it correctly. The neurologist asked if i wanted to sit down and said the news wasn't good. Bennett had Acute Necrotizing Encephalitis. The MRI was now not only showing inflammation, but it was showing brain damage now. The neurologist had tears in her eyes as she explained this to us, because of the typical high mortality rate associated with the disease. She told us the odds are basically 30/30/30. A 30 percent chance it is terminal, 30 percent chance he survives, but with severe disabilities, and a 30 percent chance he survives and recovers, but with an extremely long and painful road to recovery. She also said she's never seen anyone in the last 30 percent category. I asked her questions and consoled Laura. We were left without much hope.q

Our friends that were here to pray for Bennett had stepped out of the room while we got the news. They helped us get through the moment and if you can believe it made us laugh. He asked if he could anoint us with oil, anoint Bennett with oil, read some scripture, then pray for us. We agreed, and he proceeded to pull Burt's Bees lip balm out of his pocket. We all looked at each other and then he apologized and said that this wasn't the oil. We all laughed until we cried. That stitching of humor is just a drop in the bucket to how God constantly amazes me.

He then pulled out some olive oil and we read from James chapter 5. We then laid on hands and prayed for the recovery and healing of Bennett. It was all so powerful and heart breaking at the same time. Dreams and hopes shattered, but ultimately reminded of God's plan, which is in control, and not mine. I'm so weak but hope I can constantly remind myself that it isn't my plan that God has in store for my son, but His plan, and God has an amazing plan that He will use to impact everyone around my son for the entirety of his life.

Laura decided she needed to stay with us at the hospital that night so her family took care of the house and boys overnight so that we could spend time together. The night was hard. Screaming. No sleep. But I awoke to a neurosurgeon telling me he didn't agree with the prognosis and he believed he could help our son. They reviewed the MRI with many other doctors and determined that they could see some extra fluid in his brain on the MRI and possibly some pressure behind his eyes or swelling of the ocular nerves. They wanted an eye doctor to look at the nerves in his eyes to see if there was swelling, but one couldn't come until 3pm, so they wanted to do a surgery right away to release some of the extra fluid and possibly get him some relief. They wanted to relieve that pressure, reminding me of the benefit the spinal tap had on his cognitive functions just the day before. He told me not to wake my wife, and that he would send in an eye doctor shortly to consult with us. OK doc, don't tell your wife, and I'll be right back! Gahh! It's hard to describe what I was feeling.

Another neurosurgeon came in, and woke up Laura. He explained to us the plan of inserting a tube in to a part of his brain that they think will help relieve the pressure. They said there is a spot open for surgery that morning at 10:30am and with our okay, wanted to get started right away. So they started prepping him for surgery shortly after and he went in for Surgery at 1030am on Wednesday (12-7-22). Surgery took about an hour, and they left him sedated and intubated so that they could put in a PICC line for easier access of fluids and labs. After the PICC line was placed they slowly took him off sedation and removed the breathing tube. When the tube was removed, the nurse and doctor both felt like he was more alert looking and had better eye contact. He was very tired the rest of the evening, but we did get him to nod or shake his head to a few questions, but no physical movement responses. We still couldn't have been more happy seeing the progress and comfort he seemed to have after the surgery was done. Rest and sleep was found that night and much needed.

12/8

On Thursday, December 8th, Bennett had a CT scan in the morning and everything showed no change, so we'll hope the next MRI, which shows a lot more detail, shows the same. We met with the neurologist and she was so happy for his new level of consciousness. Poor guy is really plugged up from all of the Narcotics, but he responded to his tummy hurting and tried pooping on a bed pan. We are just thrilled at this level of communication. We will meet with rehab today to get started with physical therapy, occupational therapy, speech therapy, and feeding therapy. Bennett is currently being fed through a feeding tube in his nose.

The last few days, Bennett did gain the ability to answer questions by nodding and shaking his head, but it seems he has lost some of his motor functions for his hands and feet. He used to be able to occasionally squeeze the nurse's or our hands when asked, wiggle his toes when asked, or give a thumbs up. While this wasn't every time, it was still occasional enough to give us encouragement. One of the neurology team and nurses explained that the brain damage they saw on the most recent MRI shows damage to the cerebellum, which is an area of the brain that controls motor function, so this could be consistent with his loss of these abilities.

We are constantly praying that we've reached the peak of the inflammation and that it will start subsiding. It is going to be a very long road ahead with a lot of ups and downs. There won't be a long term prognosis for his recovery for quite a while. No one can really say what abilities he will or won't be able to regain with a lot of therapy and time. He is young, so they say young brains have a much better chance of creating new pathways and relearning how to do things.