Ok so the flight crew from the children's hospital arrived Isaac was so sick and there were so many people who had come to care for him that there was no room in the helicopter for me. My Aunts Karen and Juli arrived at the hospital, this was a great comfort to me as Juli is a nurse and had helped me through some medical struggles in life; besides Rib and Juli were always a source of comfort to me as a child and even now they calm my center.
Wednesday, August 27, 2008
Isaac was taken to the helicopter and everyone raced to the hospital. Michael's parents were on their way there already. We arrived at the hospital and the trauma team there was just doing their job but I was so offended when they began to question me about what had happened. I got the feeling they thought I had shaken my baby. They did a CT scan and figured out that that wasn't the case and he was admitted to the PICU. Michael and I followed him up stairs and watched as Dr's and Nurses swirled around him asking us questions and working on his little body. We had to leave as they placed several more permanent lines to access his bloodstream. It the time they assumed that he had Meningitis and they were treating him for it. A spinal tap was never performed and all of his cultures kept coming back negative. Isaac had began over-breathing the ventilator in the helicopter but his muscles were stiff and the neurologists told us that 35 minutes was just to long for the brain to go without sufficient oxygen. We were told to be prepared for a child that was either brain-dead or close to it. The neurology team hooked him up to an EEG and the lines were just so flat. The attending thought we should get a consult from a geneticist and they tried to find something but again nothing came up. It was a few days later when Isaac was finally able to get a MRI of his brain. The neurology team was shocked with what they saw. They even had to wait an extra day to try and enhance the images, they had expected to see large areas of dead brain matter, but instead saw only smaller then sxpected patches of dark areas that they had to look hard to see. Also his EEG was beginning to look more normal. They took him of the sedatives and extubated him. It was so good to finally hold him but he was so stiff and like a newborn all over again he couldn't nurse, couldn't smile, couldn't roll over, couldn't laugh had difficulty moving his head and following objects with his eyes. We spent a few more days in the PICU but then we were ready to graduate to the infant floor. Isaac was doing great but the attending still wanted to be able to give us a reason for what had happened. As a last ditch effort she had an ECHO done of his heart. What they saw gave them a reason for what had happened and us a whole new set of worries. Isaac had giant coronary aneurysms, he had suffered a heart attack that night. We were given the diagnosis of probable Atypical Kawasaki Disease. No one knows what causes this disease, it isn't genetic, bacterial, or viral, it responds to IVIG and generally has a whole list of symptoms, none of which Isaac had demonstrated. We were offered the chance to give Isaac and experimental medication that had sometimes helped with the remodeling of the aneurysms, and went ahead with it. We also started him on aspirin and indictable Lovenox, a blood thinner, to prevent future blood clots and heart attacks. We stayed in the hospital a few more days for observation and then we were on our merry way home with a baby whose future was more then uncertain. More later I need to put the boys down for a nap loves Ari