Tuesday, June 28, 2016

DAISY Award and Jeremy Update

During Jeremy's fight for life in January I shared updates on here frequently to keep everyone up-to-date. I typically kept the updates to numbers and facts without much else added because it was just too painful. I mentioned in this post that they were starting Jeremy on a new medication, pentobarbital, to sedate him in a different way. Rather than simply keep his body in a coma, pentobarbital limited his brain function. Now that we know the outcome of Jeremy's situation, that he survived, I would like to share the story that explains why he ended up on that medication. Mostly I want to share this story so you can understand the immense impact one nurse in particular had on Jeremy's survival. Jeremy's accident occurred on January 2nd. The first two weeks he was in the hospital there were constant ups and downs where we feared we were going to lose him. The scariest came on the evening of January 7th/early morning of January 8th. The evening of the 7th Thomas and I were visiting Jeremy toward the end of visiting hours and saw his intercranial pressure (ICP) climb into the high 30's and then into the 40's. As visiting hours came to an end his nurse had gotten his ICP down into the 30's again which was still well above where they wanted it to be, under 20. We left with heavy hearts and worried about what the night would bring for Jeremy. I began to feel dread that our hours spent with Jeremy that evening may have been the last hours we would spend with him alive.

My mom arrived to spend the night with Jeremy and reported that our nurse that night was Nicole. We all felt an immense amount of relief as Nicole had come to the rescue of Jeremy's nurse the first night he was in the hospital and helped her organize everything and get Jeremy in the best position he could be. That night was a constant battle for Nicole as Jeremy had maxed out on all the medications he was currently receiving. He was on the highest available dosage and his ICPs were still dangerouly high above 40 and even higher at times. Without the option of increasing Jeremy's medication, Nicole experimented with different strategies to bring Jeremy's ICP down. She adjusted the positioning of the head of his bed. She turned out the lights to decrease stimulation. She only moved him when he had recently been given a breathing treatment. My mom said she was constantly moving about the room, adjusting and working, making little adjustments here and there to lower Jeremy's ICP. Had it not been for Nicole and her quick actions and thoughtful plans which kept Jeremy's ICP from climbing too high, he would not have survived the night. Jeremy's ICPs were high enough that they would not be able to do a craniectomy, where a portion of the skull is removed in order to give the brain more room to swell. Had they done the procedure at this point it would have acted as a vacuum and his brain would have been sucked out of his skull. When my mom returned the following morning with an update from the night before I felt hopeless. I knew Jeremy had survived the night, thanks to Nicole, but I wasn't sure he would survive the day. That morning I did what I had feared I would have to do for days, I sat Carter down and explained to him that his Uncie J might die. He sat in my lap as tears ran down my face and we held each other. My mother-in-law happened to call that morning for an update and I had to share the information that things weren't looking good. Thankfully, the decision was made to switch Jeremy to pentobarbital and his body responded well to it. Instead of January 8th being the end of our journey, it was the last major scare in a continuously terrifying path toward recovery.

Every day after that terrifying night where Nicole amazingly kept Jeremy alive, I walked through the hospital toward his room and saw a sign about the DAISY Award for Extraordinary nurses and thought of Nicole. I thought of how hard she fought, how she never gave up, how she requested to be Jeremy's nurse even though we knew he was the most difficult case on the floor. As Jeremy began to make improvements Nicole would meet my mom at the door, running with excitement to share Jeremy's improvements. She was a nurse who was not only the best at what she did, but was an amazing support and ray of hope for my family. My dad wrote a beautiful letter nominating Nicole for the DAISY award and she won. Our entire family was able to go for the reception. I was excited to see Nicole again and hadn't thought much about it other than getting to see her. We found out she won on a Tuesday afternoon and the reception was to be held Wednesday afternoon so there wasn't much time to think about it. Thomas and I rode together to the hospital. As we climbed the stairs toward the Neurotrauma ICU (NTSICU) I began to feel increasingly more and more emotional. I remembered running up those steps to get to Jeremy's room when things weren't looking very good. I remembered racing dad up the steps feeling optimistic on a night when things had been going well. As we walked into the waiting room, I pictured Carter sitting on the bench watching Curious George as I waited to go back to Jeremy's room the night of his accident. We had almost a month of memories on the floor of that hospital and every single one of them was emotional and most were tinged with a great deal of sadness and despair. They came to get us for the reception and pulled us into the same office we sat in the night of Jeremy's accident as we waited to hear news at 2 am on whether Jeremy would need a craniectomy and discussed the possibilities of survival. At that point I was an emotional mess and came to the realization that the moment I saw Nicole I was more than likely going to weep. Thanks to her all these terrible memories led to a positive outcome. Thanks to her, my brother is alive. Nicole was in a different office under the guise that she was having a meeting. When they went to get her and she turned the corner to see Jeremy standing there, the look of shock and amazement on her face was greeted with the tears that rolled down my face. Here was the woman we could thank for the life of our beloved brother, son, and friend. There she was with tears of joy in her eyes, seeing the patient she had worked so hard to keep alive, standing in front of her looking simply amazing. It was a great moment and one that I will remember for the rest of my life. We are so grateful that we got to see Nicole again and that we got to show our deep appreciation for what she does every day by nominating her for the award and for being present as it was given to her. We continue to be thankful every day for what Nicole did for Jeremy along with what everyone in the NTSICU did for him during his stay. There is really no way to thank someone enough for saving the life of someone you love.
Nicole and Jeremy in the middle with her DAISY Award.

I thought it would be fitting to also give an update on Jeremy as I shared this story with all of you. I've been wanting to give an update and this seems like the perfect time. Jeremy had surgery on Friday, June 17th, to remove the filter that was placed to catch any possible blood clots so they wouldn't travel to his heart. The hope is that his circulation will return to normal now that the filter is gone. It is possible his circulation issues are due to his brain stem not functioning properly due to his TBI, so they may be a lifelong issue. Due to Jeremy's issues with circulation he is at risk for infection. He also has more swelling which makes it easier for his skin to break open. Due to all of these factors, his skin broke open by his toenail and his toe became infected. It was treated, but the infection never fully cleared up so he had to go back to Urgent Care and was given another round of antibiotics. The concern with infection is that since he has hardware in his body (the rod in his femur), infection will travel to the hardware. They want to ensure any infection is treated quickly to prevent that from happening. Jeremy was having strange sensations which he described as water running through his body. The doctor said what he is feeling is his nerves beginning to function again which is reassuring but was a terrifying feeling for Jeremy before he knew what it was! He has been struggling with bursitis in his hip which has made it difficult to walk. He is using his cane to help him walk with less pain and without favoring that side too much. Physically things are going pretty well. The infected toe has kept him from being able to run, but other than that he hasn't had any set backs.

Cognitively things are also going well. Jeremy was struggling initially with basic math and became frustrated when attempting problems. Recently he remembered how to do problems without a calculator. He has voiced frustration with his comprehension and attention span when it comes to reading. If he reads for longer periods of time he cannot remember what he has read. My parents have encouraged him to just read for short periods of time and take breaks. We feel confident that it will return with time. We notice a deficiency in social skills that we are also confident will improve with time. Big groups and loud places are overstimulating for him and we've also noticed he gets frustrated easier and does not like shaking hands especially when the hand shake is overly firm. One of the therapists explained to my parents that after a TBI reactions become more extreme, referring to post TBI reactions as a big R (big reaction) rather than a small r (small reaction). In a situation when he may have not liked something before, but just went along with it or made a quiet comment on the side, he now reacts very vocally and in ways that would seem rude to those who do not understand his situation. He is unaware that his behavior is inappropriate so I see that as the task that will be most difficult to work on. It's easier to work on deficiencies when we realize they exist.

So many times I have people ask how Jeremy's recovery is going and if I share the positive along with some of the difficulties, they quickly shut me down acting as though I have forgotten how lucky we are to have him here. That is most definitely not the case. I am thankful for Jeremy's presence every single day. I just feel like if I don't share the struggles, it gives a false sense of what recovery from a TBI is really like. That is not only a disservice to Jeremy, but also a disservice to others recovering from TBI along with their families. There is a misconception in the general public about what it is actually like and I had no idea what to expect going into this life change. I read lots of articles and searched out information so I could be informed and know what to expect as we traveled this road to what doctors expect will be a full and complete recovery. If more people understand, it will make the recovery process easier for patients as well as family members of someone with a TBI. It is hard and scary and can be worrisome that the person you knew pre-TBI will not be the person you know post-TBI. But my dad made a very astute observation one day when he said, "I'll never be the same person I was before Jeremy's accident, why would I expect him to be?" And, boy, is that so true!


  1. All so true. And even in all the literature, you don't read about the swelling caused by trauma or the feeling of water running under the skin, etc. And Nicole said she and the pharmacist actually made a concoction of their own like pentobarbitol when the pharmacy didn't have any and they needed it for Jeremy. And she said normally people are only on it for two or three days, so no wonder they weren't sure if his brain cells would wake up when they weaned him off of it.