Archive for September, 2014

IMG_3511If I said the 11 years of Ella’s life was an emotional roller coaster, then the last 4 days of her life was a high speed, upside down loop-de-loop that kept my stomach in knots for days. As we progressed toward our final decision to put Ella in hospice, the ups and downs of acceptance are like nothing I have ever experienced. Each up and down was felt so fully with all my being.

On Friday morning, Dave and I made the final decision to have Ella placed in hospice and bring her home to die.  This decision was made very early in the day, heart-wrentching and filled with tears. However, after we made the decision we waited. We waited for the paperwork to be filed. We waited while hospice care was set up and we were moved to a larger room on the children’s floor that had drinks and snacks set up on a table in the corner.  The larger room was to accommodate the many doctors and nurses that we had worked with over the years that came to visit us, say good bye to Ella, discuss our decision, their lack of understanding of why she was not recovering and that there really was no more that could be done for her. All of this took time, this time helped us come to relative terms with our choice. However, a few hours later the nurse entered the room and removed Ella from her IV fluids.  You begin to second guess your choice. Wow! This is it! It’s final! She is gong to die. Tears flowed, stomachs knotted and Dave and I discussed our decision once more. Then, you wait some more. We waited for a port to be placed in her leg so we could administer the final medications at home. We waited for the medications to be prescribed. Again, you have time to come to terms with your decision. We finally left the hospital around 4:00 on Friday afternoon. As I mentioned in my last post, this was horrible. Everyone on the children’s unit knew this was it. They would never see Ella again. The staff cried and we cried. As we emerged from the children’s floor, there was a buzz of activity all around us. People moving fast. People moving slow. People commenting on how sleepy Ella was (If you are ever in a hospital and feel like commenting on a sleeping child, don’t, please keep your thoughts to yourself.). People around us had no idea what we were doing and where we were going.  It was surreal. It was horrible and it was very sad. Then, you drive home, 4 pm on a Friday afternoon in traffic. You have time to process once more. Finally arriving at home, out of habit we began the process of opening cabinets to prepare her food. We stopped to realize that we will never feed her again. Again tears flow, my stomach knotted and deep, deep grief set in.

People began calling and showing up at our house to see Ella, lend support and bring food. It was busy that evening with lots of visitors. We told stories about Ella, hugged, laughed and cried. However, at night the grief was deep. The weather was beautiful the weekend Ella passed. We had the windows opened for the first time since winter. Our neighbor has a pond in his backyard and the bullfrogs that weekend were outrageously loud. Now, the sound of bullfrogs is a trigger of sadness that may take years to overcome. Dave and I took turns with Ella the first night. I listened to the frogs, sang Ella’s favorite songs, and told her over and over how much I loved her and how blessed I was to be her mom.  It was a long, long night. Saturday was very busy with friends stopping by. Once again we found it easy to laugh, cry and celebrate Ella’s life. Saturday night Dave and I sat up with Ella listening to the frogs until I finally suggested that we go to bed placing Ella between us.  As I mentioned in my last post, Ella woke for a little while on Sunday morning. I bathed her, changed her and got her back to sleep. She never woke again. Sunday was a little quieter then Saturday, but still many visitors. Our last visitor was at 4:00 and Ella died at 4:30. The moment of her death was quite magical and beautiful. Dave and I both knew at that time we did the right thing for Ella. However, once more you wait. I called Ella’s doctor who came over to our house right away to pronounce Ella’s death. We called the hospice nurse. She was about an hour away. So, we waited. I held Ella for a while but realized I couldn’t do it any longer. She was gone. My amazingly strong mother-in-law held Ella until Dave and I carried her to the hearse.  This part will have to be another post. It was intense. It was terrible. It was everything you could possible imagine and more.

I’ve had a few people say to me, “You had to know it was coming some day, right?” Yes, maybe I did, but that doesn’t make Ella’s death any easier. I loved her with all my heart, each moment of my life was consumed with Ella’s care. Anticipating her death was not something I did. We were living moment to moment. Right until the end, moment to moment. I am not sure if there was any other way to get though the experience. I suppose my grief will progress in the same way, moment to moment.


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birthdaycardMany great teaching masters say that when someone dies for whom you care very deeply all the love you gave them is returned to you upon their passing.

Ella died at 4:30 on a lovely Sunday afternoon, Mother’s day. She was ready. She was tired. She was peaceful. It was quite beautiful. She was in her father’s arms as I held her feet. My sister, my mother, my mother-in-law and a very good friend were with us in the living room. We were all talking about various things and I felt it; her soul depart.  Dave and I began crying and laughing, holding each other and Ella. Dave repeated over and over, “We did a good job.” My sister recalls me saying, “Did the past 11 years just happen or was that a dream?”

It’s unbelievable, unimaginable and no parent should ever have to go through losing a child.

Eight weeks before her death, Ella started having symptoms of severe reflux. We increased her medication. It didn’t work. We treated her for thrush. It didn’t help. We visited the doctor 4 times in two weeks. They checked her lungs to make sure she was not silently aspirating. Two weeks after the onset, I noticed her foot was swollen. When I brought this to the attention of her doctor, she had Ella’s blood tested. Her platelets were very low and she needed a blood transfusion ASAP. We were admitted into the hospital and just to be safe a chest X-ray was taken. She had pneumonia. She was put on a very high powered IV antibiotic and given a blood transfusion. We spent three days in the hospital. The pneumonia seemed to improve. However, her platelets began to drop again. She was still obviously very uncomfortable from the reflux and very hard to feed. We brought her home and continued the high powered antibiotic for the pneumonia. Her whole body began to swell from fluid shifts. We took her back to the hospital for another blood test and the platelets were again dangerously low. We were admitted to the hospital again for another transfusion. By this time the pediatric hematology oncology team became involved. Leukemia was possible;however, her blood tests were not showing any of the markers of the disease. To be 100% sure a surgical bone marrow biopsy was needed. No one wanted to put Ella through this very painful operation and with her respiratory status being compromised from the pneumonia the operation was not safe. This blood platelet drop cycle continued for 6 weeks with no improvement. 6 blood transfusions in 6 weeks. Her final visit to the hospital was supposed to be an outpatient blood transfusion. However, the day before the transfusion Ella fell asleep after lunch and she never woke up. We took her to the hospital early morning for the transfusion hoping the platelets would perk her up. Her vitals were bad, low heart rate and low oxygen sats. We were admitted, another chest x ray was taken and the pneumonia, which had been treated with 20 days of high powered antibiotics, was worse. We asked for palliative care. Several years ago we had hashed out an end of life plan for Ella just in case. Dave and I decided that we wanted a middle of the road approach—no intensive care, no ventilator. When we met with the palliative care doctor, it dawned on us that the past 6 weeks was middle of the road care. The next step was the ICU. It was time to let her go. She was tired. Her arms were bruised from the many blood test and transfusions. The pneumonia was antibiotic resistant and very aggressive. We decided we wanted hospice care at home. We wanted to bring her home to die.

Hospice arrangements were made and we brought her home on Friday afternoon. Walking out of the hospital was something I will never forget. As we wheeled Ella down the halls, life was going on all around us and we were taking our child home to die. At this point my mother and sister had arrived from Maryland and Dave’s mom was due the next day. At first, Dave was very resistant to having anyone visit. Thankfully he changed his mind because with that support Ella was in someone’s arms the entire three days she was in hospice. We were grateful for the visits and support from our community, family, and friends. Our home was overflowing with food, flowers and love.

The night before Ella passed she slept with Dave and me. She woke for a little bit that morning. I bathed her, changed her clothes and held her till she fell asleep. I knew that would be the day she would die.

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