Today has been a rough day for Eman. He started out with a low heart rate but was stable. He even had a new little buddy come to play with him. It was great to see him interact and act like a normal child... then things suddenly changed. Just before his buddy and his parents left, it was evident to me that he was in distress. I gave him CBD and an Attivan right away as he began to shake and tried to keep him calm..hoping that it would prevent what was about to happen. He calmed briefly but it began again so I gave him another Attivan and called Hospice. It seemed like I had it beat but then it hit with all force. A Grand Mal seizure. As my heart exploded in my chest, I worked to soothe my angel. Meanwhile, I tried to hold back my tears. Per instruction, I administered his Diastat and it finally passed. It seemed like forever during those short 15-20 minutes. His hospice doctor is ordering phenobarbital to help stop them from happening again. We are very close now, Maria. I could only sit helplessly as the hospice nurse administered the phenobarbital suppositories and advised that he would now sleep. The doctor told me the amount ordered was not for intent of an induced coma but in my heart, Im fearful. I dont normally show my fear in front of others but before I knew it, I could hear the sobbing in my ears and I couldnt stop. Ethan is my world and Im am so afraid that my world will soon end. It is getting so hard to stay strong. I have worked so hard to accept that this going to happen but now that it is here, every fiber of my being is wretched with fear.
Posted on: Sat, 28 Jun 2014 23:12:09 +0000