January 6th, 2014 changed my family’s life forever.
It started out as a normal day, in fact, it was the day that my son turned 7 months old. We dropped him and his sister off at daycare and went to work as usual. A couple of hours later, we received a call from the daycare center and one of the teachers informed us that something seemed to be wrong with our son CJ. He was usually a very energetic baby, but after he woke up from his nap he just didn’t seem right. He was very lethargic, seemed to have a little trouble breathing (like a chest cold) and was having trouble holding his head up.
I’m not usually a worry wort type of dad when it comes to matters like this but I had a gut feeling that something just wasn’t right. The first 2 symptoms made sense because CJ had a bit of a cough/cold for about week. The fact that he couldn’t hold his head up is what made the alarm bells to go off in my head. Something was going wrong in his nervous system. As a Doctor of Chiropractic I always take that type of condition seriously. So I decided to take him to the local hospital’s urgent care clinic so they could check him out.
He didn’t have a fever, but he was lethargic and his breathing was a bit labored. The urgent care put him through a battery of tests for flu, pneumonia, bacterial infection, etc. 5 Hours and 10 tests later they could not say what it was. All of the tests came back negative except for a slight increase in his white blood cell count. So the best guess diagnosis at this time was a respiratory viral infection. They said that we could go home but if he developed a fever later on that we should return to the ER for more testing. That was about 6pm.
At home we fed CJ and just held him to give him some comfort from the symptoms. His mother put him to bed probably around 8p.m. She checked on him about 9 and everything was good. She checked on him around 10:30 and now his breathing seemed more labored and now he had a fever of 102. We decided she should take him to the ER and I would stay back and watch our daughter who was in her room sleeping.
On the way to the hospital CJ’s fever spiked even higher and he vomited and had what appeared to be a seizure. He was still breathing but now it was very shallow. My wife speed along as fast as she could, when she parked in front of the ER he had another seizure and lost consciousness and actually stopped breathing. The ER staff grabbed him from my wife and went into emergency action.
They brought him back to life but had to use a breathing tube and medication to keep him that way. They logged in his temperature at 106.4 degrees. We were shocked and devastated that something like that was happening to him. Little did we know that this was just the beginning of a 49 day ordeal that would change the entire direction of our life.
At the Elliot hospital in Manchester, NH he was admitted into the pediatric ICU. He was conscious but couldn’t breath or eat on his own. The doctors started vigorous testing to try and determine what may have caused this serious condition. Over the next 30 days, CJ had 43 chest X-rays, 2 spinal punctures, 3 MRI’s, many blood tests, neurological exams, respiratory therapy, and other tests too numerous to count. His condition never really improved.
The doctors had a couple of working diagnosis’s going on but each test that came back negative knocked another potential answer off the list. The only test that had any significant findings were the MRI’s which showed diffuse white matter damage. The white matter acts as a relay and coordinates communication between different parts of the brain. This is not really the cause of his condition but rather a result from his condition.
The finding was puzzling because up to this emergency he had been totally symptom free and hit all of his developmental milestones ahead of schedule. The doctors sent out for additional opinions but no one could really shed light on it.
So after 30 days in the ICU the decision was made to transfer CJ to Boston Children’s hospital where they had more technology and experience to deal with rare conditions.
The first couple of days were spent retesting everything that was done in NH. More MRI’s, x-rays, spinal punctures, blood tests etc.
We scheduled a meeting with the team of doctors for that friday afternoon. They gave us the grim news. Even though they did not have a diagnosis they ascertained that the damage to his brain and spinal cord could not be repaired.
I have never had such a feeling of being alone in a room of 10 people before. My wife and I were totally speechless, full of tears, and our brains were racing with what this all meant.
We scheduled one more meeting for a couple of days later because we asked them to do 1 more MRI just to make sure.
That next meeting ended just like the first. The damage that was visible was extensive. The Neurologist said that this is the type of brian damage that you would see in a 70 year old Alzheimer’s patient.
The next step was to stop focusing on treatment and start focusing on CJ’s comfort.
We immediately called all our family and friends and told them to come visit and hold him one more time. (That is what actually inspired the video I created on this website)
My little fighter lasted a total of 49 days in the ICU before passing away on Sunday February 23rd at 11:30 pm.
The picture that I have included below is how we dressed him hours before his passing. The ER nurses told us that usually babies that pass away are taken to the morgue in just a diaper and a gown.
We asked them if we could dress him in this outfit that his aunt bought him. They said yes and so we dressed sweet CJ like a King because he was actually going To meet the King of Kings.
He took his last breath shortly after while resting on his mothers cheek.
He was 8 months old.
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