We had the unfortunate event of an 18 year old cousin, Anna, in England suddenly passing out last week from an unknown AVM. She had an EVD placed, then went to IR to have coiling and the angioseal done after the AVM ruptured in her cerebellum. After 24 hours of rest, Anna was able to move her left side only and the decision was made to continue to sedate her until today. Unfortunately, things started to spiral downwards for her--she required a second EVD after a re-bleed (on Saturday) and an emergency craniotomy yesterday. If not for the craniotomy, the surgeons stated that she would be brain dead in two days. The surgeons stated that if Anna survived 24 hours, she would make it through, though there was a strong likelihood that the swelling would be too much for her. Anna passed on this morning at 2am, Chicago time.
On Saturday, when I was at work, I called the unit asking to speak to the charge nurse to get more information about the deficits related to an AVM and the bleed in the cerebellum. I was fortunate enough to speak to a very kind, calm Maria Jamison. She gave me as much information as she knew though wanted me to feel like I've been able to speak to everyone to achieve a degree of comfort and possibly have our Rush surgeons speak with Anna's surgeons in England if the need arose. Maria promised me that she would have someone from the neurosurgical team of Dr.L or Dr. M call me, even at home. She patiently listened to the unfortunate situation of Anna and gave honest feedback delivered with the compassion you find in nurses that love what they do. Maria's heart is truly made of gold and is an excellent nurse. From my experience as charge nurse on our unit, I know that time is not always easy to attain as it is easy to be pulled in several different directions at the same time. Maria made time to find people to speak with me and continued to follow up. She did not tell me how busy the unit is (which I know is always busy) or whether or not she even had time to eat or not...she listened and reacted as though I was one of the nurses working side-by-side with her. Saturday evening came around and when no one was able to get back to me, Maria called me to let me know that someone would be calling me the following day (on Sunday).
I worked on Sunday and was extremely nervous after finding out that Anna had to undergo the emergency craniotomy. Maria called to check on me and handed the phone to Carter, a level III neuro surg resident. I explained the situation to him, and he graciously listened and responded to all of my questions. He answered questions thoroughly--everything from, "could we have seen this coming?" to "what were the signs and symptoms?" to "what do they mean about living past the 24 hours, and she will be fine?" He answered questions that plagued me such as, "Would it have been better if they had gone to the OR first instead of IR?" Carter answered many serious questions with integrity and wished our family the best.
We got the phone call at 8am Chicago time Monday that Anna had passed on. This was so unexpected that our family is heartbroken---she just graduated high school six months ago. Young, beautiful, creative, and vivacious--all spells out unfair. Today has been a day of out-of-town phone calls, e-mails, and Facebook messages, but what was unexpected was a phone call from Kiffon Keiger to call at 7pm tonight. I told her that Anna had died at 2am today and rather than just say, "I'm sorry; have a good night," she asked me about the situation. I told her and it allowed me the opportunity to have more questions answered that my family nor I had thought about---questions that come up after someone has passed. I asked her about the genetic component of AVMs, and she answered questions that I had but did not even know how to phrase them. She even said that I could have called her on the cell phone over the weekend---this left me in awe. How dedicated!! The fact that she took time out to call me when she was probably ready to go home after a busy day speaks to who she is as a person and as a nurse practitioner. I can imagine how wonderful she is with the patients and families in your unit, especially when sudden, devastating things happen. She even said that Maria left her a message to call me at home.
Being a nurse in the family has meant that the family has looked to me for things---open ears and hearts. They have taken comfort in everything that these three angels with invisible wings have said. All of these staff members were so kind to me---they even said that we are all here for each other; we have to support our own. It really makes you feel good to know that you can count on people not only in your department but in others.
I wanted to take the time to let you know of this situation that has left me speechless and in awe of the kindness and compassion the NSICU staff had treated me. Maria, the charge nurse from this past weekend, Carter the level III neuro surg resident, and Dr. L's nurse practitioner went above and beyond for me, which I am so grateful for. The concern and empathy was genuine; their support was not only felt by me but it was felt by my family as well. Our family both in the States and in England where most of our relatives are have felt a sense of peace from these staff members. The impact was deep, and they provided support not even knowing what my face looked like.