Wednesday, August 27, 2008

WOW part II

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.

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

Sunday, August 24, 2008


Ok so for anyone who doesn't know I am going to post a little bit about my little Kicker and his story. I have found that for some reason writing things down makes them seem more real to me and maybe that is why it has taken me so long to write this but here goes.

Isaac was born at 36 weeks by emergency c-section, my liver was not functioning and he was in eminent danger. Isaac  aspirated amniotic fluid and his immature little lungs were just to weak (I hate to use that word to describe anything about my little man but..) to handle it. He spent the first 8 days of his life lying in a warmer at first he was struggling so hard to breathe that touching him was too much. One day after he had had a particularly long struggle Michael was sitting with him all night. (We couldn't bear to leave the hospital.) He placed his hands around Isaac's fragile little body and sang to him for hours. Isaac's heart rate and breathing settled and he grew stronger. We brought our 5 pound wonder home on IV antibiotics ad figured that was the end of God's lesson on strength for our family. " small and simple things."

Isaac was a healthy baby for the next four and a half months. Toward the end of July I began to feel uneasy about Isaac's behavior. He had a low grade fever, irritability, and no other symptoms. I just didn't feel good about it. I took him on Saturday to see the on call pediatrician. He looked Isaac over and figured he must be teething or maybe had a bit of a virus. I was holding him in the bath Sunday night when I had an overwhelming feeling that Isaac was very ill and that I was to watch him closely or he would die. I called for Michael and discussed my concerns he said I should take Isaac back to the Dr. on Monday. I did Dr. Esham did a very thorough check but again didn't find anything, I went home frustrated and confused. I took Isaac back to the Dr. again on Thursday. Dr. Esham always listens so well to me and she decided to draw blood and do chest x-rays. The blood work came back that he was fine his platelet count was a little off but nothing that was concerning. Dr. Esham also had a radiologist read the chest x-ray he thought he maybe saw something so we started Isaac on antibiotics on Friday. Friday night we traveled to my parents home because Miles had a horse show the next day. That night (as we had been doing for about a week) Michael and I were taking turns "sleeping" with Isaac on our chest so we could be sure he was breathing. Dr. Esham had given us specific instructions that if anything changed we were to take Isaac directly to the Children's Hospital. Isaac woke up at 1 am and didn't want to eat he woke up again at 3 and refused to nurse. I almost felt panicked. We made the decision to take Isaac directly to the hospital. My mother and I both felt that we should no put Isaac in the car seat and that I should carry him on the 30 minute drive to the hospital. We hurried to the car and Isaac was behaving so strangely about 10 minutes into the drive he turned his little head and looked at me. I felt in my heart "OK he is going to stop breathing now" Breathe baby breath I called and then I started rescue breaths. Michael made a smart decision to hurry to the hospital and called 911 on the way. I could tell that my little man still had a heart-beat and he was pinking up as I was breathing the 911 dispatcher said that we had to pull over and let the police officer that we had passed at 110 miles an hour evaluate the situation. He came up to the car and I though my rescue breaths trying to tell him what was going on he took Isaac and gave him two back thrusts. I yelled "He isn't choking," grabbed my baby back and Michael and I left. We picked up another officer on the way but we were outrunning them. Michael was an amazing driver. We made it to the hospital and I ran in they were expecting me I lay my baby down on the table and he turned gray. I realized that his heart had stopped beating. They were working on him and I gave a medical history, then they ushered Michael and me out the door. We waited in the hall my parents arrived, we had called them on the way. We cried together and then Dr. Halliday came into the hall to tell us that Isaac had a heartbeat again. It had been 35 minutes of decreased oxygen and 25 minutes of CPR. We were told that he would be transported by Helicopter to the children's hospital. Ok this post is VERY long so I will post more tomorrow night about what happened next. Loves Ari