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.