Our little man has been nothing short of incredible since he was born on September 11, 2016. It is amazing how many lives he has touched, from family and friends to complete strangers. He has a perpetual smile on his face and effortlessly lights up those around him.
Tuesday, March 28 we noticed that our Super Cade was not himself. He seemed to be a little more fussy and his cry was not typical for our little man. We thought that he was likely teething or growing and figured we would keep a close eye.
Wednesday, March 29 Cade was staying with Nonnie when she noticed him to be more needy than normal. He didn't engage with his toys or have any appetite. Slowly over the day this developed into increased lethargy and poor muscle tone. We decided it would be best to get him to Kaiser Hospital for evaluation in the ER. After a gamut of normal testing including blood panels, x-rays, CT scans, ultrasounds, and even a spinal tap it was suspected to be infant botulism. His care needed to be escalated so he and Mom took an ambulance ride to the Pediatric Intensive Care Unit at Kaiser Sunset in Los Angeles.
Thursday, March 30th the team here at Kaiser Sunset, agreed it was infant Botulism, but when we started the treatment - Cade had a scary allergic reaction.- so no treatment for him. At this point Cade's body was completely paralyzed including his respiratory system. They decided Cade needed intubation and sedation to keep him stable. They also found out a few days later, that he did not have Botulism- but if not Botulism, what? That was the most traumatic, saddest, frustrating and longest week I can ever remember. It was torture.
Finally, on Wednesday April 5th, after days and days of research, doctors, professionals and testing, the neurologist suggested another spinal tap. It was later that day that we had an answer - Guillain Barre Syndrome. They did not catch it earlier because this is not a syndrome typically found in kids, and even less typical in babies. They started an IVIG treatment and now it is just a waiting game.
Currently, Cade is resting in his crib on supplemental oxygen, being fed by a feeding tube through his nose, and given fluids through an IV. He cannot move his eyes, arms, or legs (similar to Locked In Syndrome). As you can imagine he is very frustrated because he wants to interact, smile, and talk to all who come near him. He has specialists working the safest and most effective care possible while trying to keep him comfortable as his body slowly (hopefully) heals.
Thank you all for your prayers, positive thoughts, support, and love for our sweet baby boy. Cade's parents are focusing on taking care of our Super Cade and will do their best to provide frequent updates on his condition through this website.