Wednesday, August 5, 2009


We had gone in for Caleb's Cardiology appt. Caleb just got done having his routine EKG and we were waiting to get his echocardiogram done. Daddy was holding him and I noticed he was trying to get Caleb comfortable. I went over to them and knew something wasn't right. Steven said that he just starting pushing out & getting rigid. Caleb had a blank stare on his face and he wasn't responsive. I couldn't bend his arms or legs. I opened the door and told them that I thought Caleb was having a seizure. All of a sudden everyone came running in. It just happens that Caleb's Cardiologist comes to Ocala and holds appts at Dr. Kern's office (Pediatrician). All of a sudden Dr. Kern's comes running into the office too. By this time Caleb was in the postictal period. It took him a couple of hours to finally calm down. They all agreed that we needed to get Caleb to the Shand's to be evaluated. After a great ordeal and many hours later we were at Shand's. We met with the anesthesiologist because Caleb was scheduled to have an MRI in the morning. I asked why we weren't meeting with the cardiac anesth. We were told that he would absolutely...always need to be under the care of a cardiac anesth. I fought with the dr's for hours. Dr.Ivsik (Caleb's cardiologist) came to the hospital and took care of things, he is wonderful. But it took the hospital 20 hrs to get things arranged. I was so angry because Caleb had only had IV fluids.

Caleb didn't do well under sedation and after the MRI he was sent up to PICU to recover. He just wouldn't come out of it. At about midnight he started to go down hill quickly. I watched the monitors and his respirations went flatline then his sats dropped. He would gasp when he came out of what we think were seizures and apnea. It was horrible. I could tell when he was going to crash. It got more and more frequent. I just layed there on him and cried. The nurses & dr's worked so hard to try and stabilize him. They asked me what our wishes were. My stomach just heart hurt so bad. I didn't know what was I did know I just didn't want to think about it. I prayed that God would guide me in these hard choices. I called Steven about 2 am and told him that I thought it was time and for him to come to the hospital quickly. Extra caffeine didn't work. They put him on a cpap. He finally was able to stay stable and rest. Caleb was also put into isolation because he had a fever and they weren't sure what all was going on. The next day he had an EEG done. Both the MRI and the EEG showed that he was having seizures. He was also diagnosed with Dandy Walker Malformation. Caleb hadn't cooed or smiled or acknowledged us for days. I was so sad. I kept thinking what did I do?? I was so afraid I wouldn't get my little mouse back. But we did. After we got home he really started to get back to his old self. Thank you Lord for continuing to keep Caleb safely in Your arms. You are our strength...You are with us always....

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