A Second Long Day

Today, I finished the actions that were at my disposal to complete my record that will be evaluated for promotion later this year.  I feel good that I've done what I can at this point.  Truth be told, I'm not really sure I want the promotion, but I've decided to turn that decision making over to others and the universe in general. There are a few reasons for this that involve a sense of duty or obligation, but mostly I believe that letting my will take charge and removing myself from the running at this point would be an exercise of ego for the most part. I'm not really confident that declining to compete would be a good decision, so I've put that call in the hands of fate.

I got a late start this morning, and my walking for the day suffered a bit.  I probably needed the rest more than I was willing to admit, and since I'm still on track for the threshold goal this month I suspect things worked out just as they should have worked out.

Anacostia sunrise with the USS Barry

Because I was running behind, I passed my usual picture spot in the magical moments just before sunrise. The air was brittle with cold and and there was not a hint of a breeze. The sun was rising just behind the ex-USS Barry, the reflection off the calm water was magnificent, and the waning moon and Venus cut through the inky blue twilight like a couple of magnesium mirrors.  This is one of the most spectacular vistas that I've ever observed at this location

The second day really started for me when we met with our daughter's neurologist and one of the residents from the Pediatric Intensive Care Unit (PICU) to discuss her injuries and prognosis. It seems to me that this was just after rounds near 0830, but this is just an impression and could be entirely wrong. The news we received at that meeting was not at all hopeful.

The neurologist related that the brain damage that was typical in cases with similar CAT scan findings twelve hours into the ordeal was almost certainly fatal. It was hard news to hear, and because our daughter appeared to be resting peacefully and might at any moment open her eyes and resume being a normal five year old (or at least normal for her) it was difficult to believe and accept. We asked some probing questions, and the neurologist admitted that certainty was impossible, but within the limits of medical knowledge there was zero real hope for any meaningful recovery. The swelling of her brain had probably not yet reached the maximum magnitude, but the damage that had already been done had reduced her neurological function down to the most basic subconscious functions required to maintain clinical life.  In fact, they had removed her from the respirator, and her breathing rate on her own was ultimately insufficient to sustain life had they not put her back on the machine.

The neurologist suggested that we may want to start considering the possibility that a decision to remove her from life support might be required in the future. She was on the respirator, she was being given a host of medications to moderate vital functions like blood pressure, she was sedated to block pain to the extent that we understand how that process works, but her life had been taken by the experience she had endured and her death was inevitable in the short term.

I don't remember the details of what happened over the next couple of hours. I think we talked about how we didn't want to give up too early even in the face of what we'd been told. We talked about the removing life support and things that we wanted to do before making that decision. We talked about sadness and disbelief. We asked for another CAT scan, and it was performed. The diagnosis of a fatal anoxic brain injury was confirmed. At some point in time one of us mentioned the possibility of organ donation and what that process might entail. I think we asked our nurse in the PICU about it. I believe he took our question to the doctor. More questions passed between us and the doctor. We decided to get more information. We decided that we did not wish to delay the inevitable outcome any longer than necessary, but we wanted her brothers and sister the chance to say goodby. We called my wife's brother and mom, and we made arrangements to bring the siblings to the hospital.

At some point in the process we spoke to a social worker about the possibility of organ donation, and she also agreed to interact with our daughter's brothers and sister when they came in. She arranged for us to meet with the hospital ethics advisor to be interviewed about the possibility of organ donation. We cried, and laughed, and joked, and cried.

A little after noon we talked to the hospital ethics advisor. She interviewed us and asked a series of questions that puzzled me a little. She did ask the standard questions about whether we understood our daughter's condition and the extremely unlikely possibility for any recovery. She asked about where we'd heard about organ donation. She asked if ANY of the hospital staff had mentioned the possibility of organ donation. Throughout the whole ordeal, none of them had mentioned a word about it. Organ donation was not raised once, and I found this also to be a little strange. I finally asked the hospital ethics advisor why she had basically interrogated us (gently of course) on this topic, and she told me that if any of the hospital staff had mentioned the possibility that the hospital would not have allowed us to pursue this option.

After about an hour of discussion, the hospital ethics advisor cleared us to talk to the non-profit organization that coordinates organ donors and recipient candidates in that geographic area. We'd signed numerous documents at this point, spoke to two hospital chaplains, one of whom we dismissed and asked to never see again. That request was honored. The other chaplain happened to be Muslim, and she was exceedingly comforting for me. I think my wife liked her as well.

More decisions about organ donation were presented to us. After a fairly long time considering the matter we made the decision that we would pursue an unrestricted path to donation. This cleared the path for any part of our daughter that might be used to help someone else could be used. Corneas, organs, bone marrow, bone, ligaments, and skin were going to be made available for transplant.

We were presented with the decision to remove life support or wait for a declaration of brain death. Due to hospital protocols, a diagnosis of brain death had the potential to take weeks or months to play out. We decided to remove life support, but first had to consider how this decision would impact the decision to allow organ donation. Removing life support would likely preclude a diagnosis of brain death and lead to cardiac death if her breathing rate proved insufficient to sustain life. Both of these paths impact the potential for viable organ donation. An organ recipient would not be able to use our daughter's heart if she experienced cardiac death. Also, if she sustained her own life for greater than one hour after being removed from life support, none of her organs could be considered viable for transplant. A diagnosis of brain death would potentially take weeks or months, and if at any time, she experienced cardiac death waiting on the required protocols to be met to permit that diagnosis, it was very likely that an operating room and the right surgeons would  not be available in time to permit her other organs to remain viable. We decided that we would accept the uncertainties associated with removing life support. I know I felt that was the more predictable outcome at the time we made that decision.

At about 1630, we brought her brothers and sister in to say their goodbyes. Hugs and kisses were exchanged. We held our sweet girls hands. We loved her. We gave her cards and some of her favorite stuffed animals. We cried, and laughed, and smiled, and cried.  We whispered to her and told her we loved her and that we were proud of her.

We expected that we would remove life support later that evening, and once we'd completed that hard and soulful exchange of farewells, we went out to the hospital flagpole.  Our daughter's brothers and sister were given the opportunity to raise the "Give Life" flag in honor of the sister's upcoming gift of a better life to someone else. The flag would fly as long as our daughter remained in the hospital and for twenty four hours after her death. If you ever see that flag outside of a hospital it probably means that someone there is having one of the hardest days of their lives and that someone else is getting some of the best news they've gotten in a very long time. It tore at the heart, but also gave hope. The mixture of sadness and triumph is the most spiritual thing I have ever experienced.

During our goodbyes and the flag raising, the organ donation coordinator had arranged for a series of lab tests and medical measurements to be taken and transmitted to the organ donor and recipient network to find possible matches. When the results came in, life intervened. A potential recipient's surgeon had asked if we could delay removing life support until the following morning to allow the best opportunity for a successful transplant to their patient. The doctors and organ donation coordinator told us that we did not have to wait if we did not want to, and that all involved would try to make things work in accordance with our wishes.  Life intervened, and we decided to spend one more night with our beautiful girl.