The last week of Markelle’s life was the hardest week of my life. Markelle’s health declined dramatically throughout the weekend with her belly continuing to grow because her liver and pancreas were so sick. At this point she had a fever, needed blood transfusions and continuous oxygen. By Monday, Markelle was awaiting a surgery consult to see if we could find out where she could be bleeding in her belly.
That Monday, our day started out very much on the wrong foot when a new resident came in our room to check on Markelle and report back to the GI team before rounds. While she was examining Markelle she casually looked over at me and asked “Do ya’ll have things in order for her?” and I said “What do you mean?” and she said “Do ya’ll have a DNR in place?” I looked at her and said “Of course we don’t have a DNR!!! I was so mad that I could not see straight… I could not believe that she had the gall to ask me that and who did she think she was talking to??? I was so angry and appalled by this.
By late morning I was very unsettled by how rapidly things had changed in the last days and the lack of response to getting Markelle into surgery today. When the GI doctor came in she asked for some extra labs to be drawn because by this point Markelle was not waking up or responding. The MRI we did over the weekend showed that Markelle’s pancreas was very sick and was basically falling apart, the fluid from her pancreas was destroying her other organs. Markelle was not well enough to handle surgery and after talking with her surgeon, surgery would not help at his point. The labs came back showing that Markelle’s CO2 level was very high and we had to make the decision to go to the ICU and put her on the ventilator or sign a DNR….
It was so unbelievable that this day had come for us! I knew Markelle was very sick and she was no longer a candidate for a transplant. This was not at all how I thought we would make the sensitive end of life decisions… Markelle needed time! I needed time! But she was tired and she had already told me the week before that she did not want another transplant… and that she knew she was going to die.
After Brandon and I talked about all that had transpired we decided that it was best to leave it up to God and not to use machines to help keep her alive. My priority had always been Markelle's happiness and the quality of her life, this was a difficult decision, but one we felt was best for Markelle. I asked the doctor if we could be moved up to ICS and be with nurses that knew and loved Markelle for the last hours of her life. I made those very difficult calls and first thing I needed to tell Mikalie that her sister was dying. I had just told her the night before that Markelle was going to be okay just like every other time she was sick and I needed her to know that was not really the case. I have no idea what I said to her I just only remember that it broke my heart that I had to break her heart too!
We moved floors and the flood gates opened with visitors… Allowing everyone to come and say goodbye to her seemed to be the right thing to do, she loved people and it was what she had always wanted.
On Wednesday evening Markelle woke up for the first time since Sunday night and asked for a Popsicle and I wondered if she would once again defy the odds and make it through this time too… But that was not God’s plan.
Friday morning I had to leave the hospital without my precious baby girl, leaving the hospital one day without her was what I had desperately feared her whole life.
Friday, February 10, 2012
Friday, February 3, 2012
To the hospital.... for the last time
Six years ago today, I took Markelle to the hospital; it would be for the last time… That morning Markelle woke up around 6 a.m. with back pain so severe that I immediately knew it was pancreatitis… again. In the four months leading up to the removal of Markelle’s transplanted bowel, she had pancreatitis more often than not, so this was obviously going to be another hospitalization to get the pain under control. I paged her doctor to let him know that Markelle was having enough pain that I didn’t think I would be able to control it at home. Usually, I gave her pain meds at home until the pain was so severe that she had to be admitted in order to receive higher doses. However, this time I knew it was bad enough that we should just go to the hospital and get the pain under control… sooner than later.
After Markelle’s doctor called me back he made arrangements for a direct admission to the floor. My heart sank when he also told me that she would no longer be admitted to our normal unit at the hospital, the Immune Compromised Unit (ICS). Markelle had been on the ICS unit since she was 2 years old but now that she had her transplanted bowel removed, she was no longer considered immune compromised. Now that was about the dumbest thing I had ever heard, but what choice did we have but to be admitted to the Medical Surgical Unit? He let me know when a room would be available for her and I started making the calls to arrange our life beyond the hospital walls. Most times Markelle and I did our hospital excursions solo but this time Brandon decided to leave work and take us to the hospital. I made arrangements for Gage to be watched and Mikalie to be picked up after school. I packed our bags and brought plenty of Markelle’s pajamas with us because she loved her own and hated wearing the hospitals.
By the time we got to the hospital, Markelle was hurting so bad she could not walk and her dad had to carry her. We got settled in our room and I shared with the admitting resident Markelle’s extensive medical history and the long list of meds she was on… not a short process but necessary to understand Markelle’s story and get her the much needed pain medication ordered. I decided to go to the cafeteria to get a Coke before they closed and ran into her doctor in the process; he was on his way to our room to check on Markelle. I told him that he could go see her and I would be right back but he said that he actually needed to talk to me … now. He put his hand on my shoulder in a very sympathetic way and I knew immediately that no good was going to come from our conversation. The last time he put his hand on my shoulder in that sympathetic way was the day he told me Markelle had received HIV positive/inconclusive blood (that’s another story for another day)… The point is, the doctor’s sympathetic gesture told me that I was about to get an emotional kick in the stomach... and I did! He had received the results from the extensive antibody study that we had drawn the previous week. The results showed that Markelle’s levels of these specific antibodies were much higher than normal. I had already talked with the transplant team who ordered the antibody workup and knew these results meant Markelle was no longer a candidate for a second transplant. I felt like we had just lost the biggest fight of our life. I knew that we were out of options once the transplant team officially said she was not eligible. Overwhelmed by this news, I went into Markelle’s room with her doctor and told her that I still needed to get my Coke and would return in a little while.
After telling Brandon the news… news I had so deeply feared, I walked downstairs to call Allie and Amy to have a small “freak out” session. When I was finally able to compose myself, I went back to Markelle’s room to email her transplant doctor so that I could address the test results with him and know what this really meant for Markelle. I believe the exact words of his response to the results were “these results are not favorable.” Everything so far about this hospital stay was different and unsettling to my heart.
When Markelle was in this much pain all I could do was lay in bed with her and rub her back. Nothing took the pain away but rubbing her back comforted her… so I did it non-stop. While I was lying with her, Markelle asked me if I would hold her and I replied that I was holding her. She said, “No mommy, hold me like a baby.” I scooped up her little body in my arms and she snuggled her head in my chest. I cried quietly to myself knowing that my heart was right… this really was going to be different.
After Markelle’s doctor called me back he made arrangements for a direct admission to the floor. My heart sank when he also told me that she would no longer be admitted to our normal unit at the hospital, the Immune Compromised Unit (ICS). Markelle had been on the ICS unit since she was 2 years old but now that she had her transplanted bowel removed, she was no longer considered immune compromised. Now that was about the dumbest thing I had ever heard, but what choice did we have but to be admitted to the Medical Surgical Unit? He let me know when a room would be available for her and I started making the calls to arrange our life beyond the hospital walls. Most times Markelle and I did our hospital excursions solo but this time Brandon decided to leave work and take us to the hospital. I made arrangements for Gage to be watched and Mikalie to be picked up after school. I packed our bags and brought plenty of Markelle’s pajamas with us because she loved her own and hated wearing the hospitals.
By the time we got to the hospital, Markelle was hurting so bad she could not walk and her dad had to carry her. We got settled in our room and I shared with the admitting resident Markelle’s extensive medical history and the long list of meds she was on… not a short process but necessary to understand Markelle’s story and get her the much needed pain medication ordered. I decided to go to the cafeteria to get a Coke before they closed and ran into her doctor in the process; he was on his way to our room to check on Markelle. I told him that he could go see her and I would be right back but he said that he actually needed to talk to me … now. He put his hand on my shoulder in a very sympathetic way and I knew immediately that no good was going to come from our conversation. The last time he put his hand on my shoulder in that sympathetic way was the day he told me Markelle had received HIV positive/inconclusive blood (that’s another story for another day)… The point is, the doctor’s sympathetic gesture told me that I was about to get an emotional kick in the stomach... and I did! He had received the results from the extensive antibody study that we had drawn the previous week. The results showed that Markelle’s levels of these specific antibodies were much higher than normal. I had already talked with the transplant team who ordered the antibody workup and knew these results meant Markelle was no longer a candidate for a second transplant. I felt like we had just lost the biggest fight of our life. I knew that we were out of options once the transplant team officially said she was not eligible. Overwhelmed by this news, I went into Markelle’s room with her doctor and told her that I still needed to get my Coke and would return in a little while.
After telling Brandon the news… news I had so deeply feared, I walked downstairs to call Allie and Amy to have a small “freak out” session. When I was finally able to compose myself, I went back to Markelle’s room to email her transplant doctor so that I could address the test results with him and know what this really meant for Markelle. I believe the exact words of his response to the results were “these results are not favorable.” Everything so far about this hospital stay was different and unsettling to my heart.
When Markelle was in this much pain all I could do was lay in bed with her and rub her back. Nothing took the pain away but rubbing her back comforted her… so I did it non-stop. While I was lying with her, Markelle asked me if I would hold her and I replied that I was holding her. She said, “No mommy, hold me like a baby.” I scooped up her little body in my arms and she snuggled her head in my chest. I cried quietly to myself knowing that my heart was right… this really was going to be different.
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