That morning shortly after being discharged, but still in the hospital room, his mother noticed that his color looked grey and something just seemed off. Concerned, she decided to wait for her husband to arrive and view him before making their way to the car. Then seconds before he entered the hospital room, Baby Kole stopped breathing, went limp, and started dying in his mother’s arms! He was rushed to the Pediatric ICU and was resuscitated by a team of 14+ people. He was very very sick and required a full blood transfusion and a nurse in his room 24/7 to manage all of the machines he was connected to. Since he was so dehydrated and was resuscitated several times, he was placed on life support and he suffered acute kidney failure and acute damage to both his heart and brain. Doctors said that while they expected all effected parts of his body to heal, the recovery time would be slow and gradual.
Then on Christmas Eve, a day after the breathing tube came out, he suffered a horrific seizure that fortunately was quickly stopped with the assistance of medicine and the doctors who rushed to his side in the PICU. It was then realized that the unusual behavior his parents observed in him for 36 hours leading up to the event was actually him seizing eight times per hour! Baby Kole was given preventative seizure medication and hooked up to an EEG machine, but he continued to seize 4 times per hour for 24 hours. His medication was increased and modified 4 more times over another two days until they figured out the right cocktail to make the seizures stop completely.
Sadly, Baby Kole’s first Christmas was spent in the PICU and his two year old brother and two sisters missed the holiday entirely with their family. His mom & dad never left his side... his father slept in a chair in the PICU room and his mother slept in the tiny windowsill curled up into a ball. It was devastating for them to be apart from their other children under these circumstances and to miss a holiday they worked so hard to make special for their family, but Kole’s health came first.
By this time, he was breathing on his own, his fever was gone, the vomiting stopped, he lost more than 25% of his body weight, and his seizures were controlled with medication, but his white blood cell count was still high, and the persistent unusual colored diarrhea meant he still required fluids. The next step was to try an allergen free formula to improve his stool, but Poor Baby Kole had an unprecedented instantaneous allergic reaction to it. His face turned the color magenta and swelled up, he started crying, and he broke out into a puss filled rash all over his head, face, ears, neck, body and arms. It was awful!!! It took days, baths, and prescription ointments to clear it up. The doctors had never seen this before and were shocked by his response to say the least.
His mother insisted on resuming feedings using her allergen free breast milk that she controlled with her own strict diet and Kole did great on it. Granted, as the neurologist warned... it would take time to retrain his brain how to eat after the trauma of being resuscitated, so it’s been a slow process trying to remind him to eat and increase his milk intake, but it’s a step in the right direction.
At this point, doctor’s still didn’t have a diagnosis, because his symptoms did not add up.... initial respiratory infection followed by vomiting and diarrhea, extreme dehydration, followed by near death & recitation, countless seizures, a rash, then unusual stool that appeared to look like a parasite, so they brought on a team of cutting edge geneticists to see if they could help. None of the pieces fit together and with the exception of a high white blood cell count... ALL tests kept coming back negative. He was evaluated by a cardiologist, respiratory therapist, neurologist, a team of IG doctors, the country’s leading doctor of infectious disease, a team of allergy & immunology doctors, dermatologists and genetic sequencing researchers. The geneticists are doing a complete workup on him using whole genome sequencing to look at markers for syndromes and other illnesses, but those results are still pending. It is uncertain if the doctors are dealing with an unknown ravaging virus, a GI problem, a severe reaction to a food allergy, a parasite, or a genetic syndrome. They call him the little black box in the PICU, because he remains a medical mystery. While he is showing signs of improvement, the recovery will be long and he will remain at Rady Children’s Hospital under close observation until they have a diagnosis and treatment.
His mother had a severe postpartum hemorrhage shortly after delivering him that nearly cost her her life, so it’s been a rough 8 weeks for the Azzeh family and too much time spent in hospitals fighting for their lives. If you would like to help, above all requests, we are asking that you pray for Baby Kole and his recovery. Pray that the doctors find a diagnosis and a cure for his unusual illness, and pray for his entire extended family who is suffering mentally & emotionally during this arduous time.
We are also asking that you consider reposting this in an effort to help raise money to assist the family with mounting medical bills that will cripple them financially. They have already been though so much and every contribution big, or small will help them so that they are not forever haunted by this awful experience.
With all of our Love & Gratitude,
Kenny, Krista, Kane, Kole, Audrey & Ella Azzeh
Jamil & Pam, Miles & Katie, Deena & Danya Azzeh
Kent Raimondi & Nicole Raimondi
Fran Kirby Murdock & Lauren & Jasmin Murdock
Jimmy & Linda Arslanian
Candace Arslanian & Andrew
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