We are trained to handle many emergency scenarios with Elias. We have had to save his life repeatedly over the past 2 years as he stopped breathing, but nothing had prepared us for today. We experienced a fear and sense of helplessness that words just can not adequately express. This was the scene outside our door at 1:18pm yesterday afternoon. One we never thought we would need and hope to never again. Elias had to be rushed to the hospital via ambulance.
As we updated earlier this week he has been having another round of breathing issues. Overnight we had to put him on oxygen and the vent was breathing for him. Through the morning he had periodic spells and we dealt with them as we always do. Shortly before 1pm he stopped breathing again. Katharine was bagging him and we had oxygen on. After nearly 2 min he still wasn't breathing on his own. We decided to move him back upstairs to place him back on the ventilator. We placed him in the bed and had the oxygen and ventilator in place when we noticed that Elias was looking off with his eyes to the right. He was unresponsive to touch or hands in front of eyes. Then he began to shake and shiver all over his body, eyes still not moving. The shivering became worse and we knew what was happen, even though it had never happened before. Elias was have a full blown seizure. We called 911 and requested a squad. Elias worsened as we waited for the ambulance to arrive. Our concern grew into a bit of panic. We were watching him slip away. We were frightened beyond belief. Once Elias was moved downstairs and loaded on the ambulance they raced him to Children's Hospital. As the driver told me, don't worry we will get him there loud and fast. Katharine rode with them while I finished gathering his equipment.
Once in the ED he was taken to the trauma bay. He was continuing to seize and had not stopped. It is estimated that the seizure lasted roughly 45 minutes. While the doctors can not be certain about possible brain damage, the trach and our ability to keep him oxygenated may have saved him, not only his life, but the brain damage or at least minimize it. Sadly it is too early to tell for certain. Only time will tell us what if any is there. One positive is his reactions when they touch and pull on key points of his body. Within 50 minutes he was having a brain CT and we were rolling into the Intensive Care Unit. Initially his glucose levels were 300+ in the ambulance and had risen to over 500 in the ED. The glucose in the PICU was trending down to about 300. Seizures will cause glucose to rise, but not like that. So endocrinology moved up the ranks of priority. It was so nice to see Dr Rose walk in who is one of the most active researchers and knowledgeable endocrinologist when it comes to Fanconi Anemia. She assured us that given known FA patients glucose and insulin regulatory issues it was indeed possible that the 500 reading was all caused by the seizure. They would follow up on this, but in a day or two when he was less medicated and more stable. It is another example of the unique and pragmatic tendencies little known and understood issues within FA create problems for medical professionals who do not know about this rare disease. At least for now we can focus and worry less about that problem. The PICU team has been great and immediately sprang into action with contacting and consulting many of Elias primary specialist. Several of which personally came into evaluate him. Often times the politics and egos of the hospital interfere with that, but given the circumstances and the mystery it has been extremely reassuring thus far that all the folks that know Elias the best are on this. It makes us feel so much more confident about his chances. Right now Elias has every culture and blood test known to medicine that could remotely apply being done, including cultures. A lumbar puncture was done to test for meningitis which he is already receiving proactive antibiotics to treat should that come up positive. He is also receiving a wide spectrum of antibiotics to treat any potential infection that may have gone undetected and cause this issue. They also have an EEG hooked up that will run for sometimes. He is of course on the ventilator and it has been back and forth on the vent breathing totally for him. His settings are higher than normal and he is struggling a bit with CO2 issues. For the lumbar puncture they had to sedate him so as of now at least Elias is out. There still is a lot of uncertainty mainly is this a new problem and concern to add to the list or is this the result of the breathing issues that have evaded us? Too early to tell and Elias certainly has an uphill battle the next 24 hours and not out of the woods yet.
We are exhausted and emotionally drained. Thank you to everyone on facebook for your absolutely amazing outpouring of support and prayers. It is so amazing how many peoples lives Elias has touched. We are humbled and grateful to have such amazing family and friends. You all are the greatest and you all have helped us stay strong through this. We may put up a good front, but believe us the tears of fear have been flowing today more than ever. We will keep you updated as we can. We have no idea what is going to happen tomorrow, but we will continue to pray that Elias will pull through yet another tough battle.