Testing of Faith

Hello everyone...sorry that I haven't posted in a few days, but, things have been very busy and yesterday Nick took a sudden turn for the worse (seemingly out of the blue, but, not really.) I put this picture up to remind me that this is the Nickolas I am fighting for every minute of every day! The handsome, healthy, strapping young guy with the content smile on his face. It breaks my heart every day to see the shell of his body that is left to continue this fight. But, I know his heart and his spirit are still in there...and I will fight for him when he cannot.

I will put the bad news out here in short form...if you want details read on. I know I can be long winded, but, it also helps me to have somewhere vent. So if you don't want to read all that stuff
you can just stop and wait for the next update. Nick started having seizures yesterday! He had several episodes of "mild" focal seizure activity, which prompted an emergency jaunt to CT scan, which showed nothing! Upon returning to his room, he had another episode. During the seizure, Nick wasn't breathing well and he was had to be prompted to breathe. His heart rate dropped a couple times and his color was horrible. The doctors INSISTED HE GO TO MRI, despite my STRONG objections and feelings that he was not stable to travel to the MRI scanner which is about a mile or more from the Weinberg building. I wanted the "critical care transport team" to take him and this team was not available at that moment. Instead of waiting, the doctor decided that Nick should go down to the bowels of the earth with a resident and a nurse who was the "shift coordinator." Glenn went and carried equipment that I asked to be brought (like suction and emergency bag) and I went, unfortunately as the second nurse, bed pusher/puller, elevator holder, monitor watcher etc. Upon arrival at the MRI scanner, Nick began to have another more serious seizure! This was so scary and horrible to watch! They had to give him Ativan to stop the seizure and then his breathing got so low....soon the CODE TEAM was being called. The anesthesia doctors decided it was necessary to put the breathing tube back in due to Nick's extremely low ventilation. A random nurse tried to make me leave...well, I guess you can figure out how that went...Glenn & I stood there in horror praying that our son was not going to die this way, while an Episcopalian minister tried to distract and comfort us.

The MRI could not be done now because they did not have a special ventilator that can go in the MRI. Nick was brought back up to the infamous "ROOM 8," where patients go who are more critical or need more watching. We hate this room, it is cramped and small and it is ridiculous that a room this small is the critical room! Sorry sidetrack...

Nick spent the night on the breathing machine and he is currently off to MRI for the past couple hours! It takes forever because of all the precautions that must be taken. No metal of any kind can go in this scanner....long story.

The latest theories on the cause of all this...toxicity from a medication that Nick has been on for a while...his Tacrolimus (which is his anti-rejection drug). Apparently it can cause this thing called "PRES," which stands for posterior reversible encephalopathy syndrome." The key word being reversible. Basically it cause swelling in and around the white matter of the occipital lobe. It can also be cause by high blood pressure, which Nick has not really had until just the past few days. Although, his pressure has been elevated more since the surgery.

They also think that Nick has this thing called TTP, which stands for thrombotic thrombocytopenia purpura. This is something they think is an autoimmune response, possible caused by the Tacro toxicity, that cause the body to chew up red blood cells and platelets. This explains why Nick has been dropping his counts since the surgery, which I have been telling them all along is not like him. Surprise, they have not been listening. Also, since the surgery and even before, Nick has been having these purple spots all over him and pettichiae, also pointed out to every doctor that comes to his bedside, also ignored! This would explain all the bruising that Nick has been having and worse so now since his surgery is over. Usually this must be treated with a blood "exchange" transfusion and/or plasmaphoresis (different than his photopheresis). This would require Nick to have a huge catheter put in his neck or groin and carries lots of risk due to his low platelets and bleeding. The doctors are waiting for the results of the MRI scan before they make any further plans. Nick has been placed on an anti-seizure medication, his has had an EEG and he has been seen by a neurologist last night and today.

Nick seems to have stabilized somewhat. As far as I know he has not had any more seizures. He spent a quiet and sedated night on the vent. Nick had a good nurse last night in whom I have great confidence. Also, Dr. Frosty was the fellow on call, so at least he knew Nick and his long history.

I have had an uneasy feeling for the past few day, nothing I could put my finger on, but, I just KNEW something was not right. Nick had been having some signs that he was having some memory issues and needing things repeated. We attributed this to his pain pump and his surgery. The chest tube actually came out on Wednesday and the last of his tube (the pee tube or Foley catheter) came out yesterday. Nick was doing OK, but, everything wasn't quite right. Yesterday, when PT came to work with him, he was having visual disturbances, changes in his visual field and seeing things like "baseball players" and "slot machines." He had obvious changes in his field of vision and was even having some trouble writing his name. This was all before the seizures started. Anyway, that is all I can manage to report right now. To say this has been hell, is an understatement. I feel like I am in that numb place where I cannot feel anything. I did have a good cry while waiting in the MRI for them to get Nick stabilized. I am very scared, as I don't know how much more this poor guy can take. He is still in there for he tries to wake up and pull out his tubes, he responds to his name and this is all good. The doctors hope to try to get him off the ventilator today. Although, I am not sure if this will actually happen. For now, Kate & I sit here waiting and praying for continued miracles on Nick's behalf.

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing (James 1:2-4).”

“No one tests the depth of a river with both feet” African Proverb