I want so badly to write that things are going better… sadly they are not. Supportive medicine, that is the term that Dr. R is using to describe what we are doing for Lucy. We are trying our best to manage her pain, and let me just say that has NOT been easy. I believe that we have adjusted Lucy’s morphine dosing six times since starting her on it. Most recently we have decreased the duration of time between doses from every three to every two hours. She continues to whimper and moan in pain, it is almost too much for this mama’s heart tonight. Please pray that this change in dosing is what will keep her comfortable tonight as she and I are in need of a good nights sleep.
There was a party of yellow masked and gowned (infectious disease precautions) doctors and nurses in Lucy’s room this morning at 7:20 am, Lucy and I were the only one’s not appropriately dressed for the party. Dr. R came in and discussed her need for oxygen and then proceeded to turn it down only to have half of the room ask him what he was doing. He watched as her numbers quickly plummeted and then said that he wanted a chest and abdominal x-ray ordered bedside. He was reluctant to order an abdominal x-ray because he said that he was not going to replace her j-tube if it was out of position. I agreed to not replacing it today if it were out of position, but rather we could do it later when she is feeling better. He admires my persistence and ordered the abdominal scan too. We also discussed Lucy’s obvious cognitive decline and talked about doing a CT scan of her brain. After talking it over, we agreed that a CT scan was warranted based on her lack of responsiveness.
After getting her chest x-ray we learned that Lucy has a pneumonia, she was started on IV antibiotics this afternoon for treatment. We are not sure if she has an aspiration pneumonia or an acquired pneumonia, so Dr. R put her on an antibiotic to cover both types. The abdominal scan showed that Lucy’s j-tube is in position, good news there for when and if we go back to using it. We stopped enteral feeding a little over two weeks ago in an effort to alleviate the chronic daily pain Lucy was experiencing with feeds. Based on her manometry study results, enteral feeding is going to be challenging, but we are not giving up just yet, just taking a break for a while.
We went down to CT this afternoon, it was quite the ordeal moving Lucy across the hospital with all of her various pumps, monitors, and tubing all the while trying not to agitate her. Soon after her CT scan we received great news, her scan came back NORMAL, thank God! Dr. R told me this morning that Lucy is his sickest patient at the moment, he is worried and shared with me that she is not moving in the direction that he would like to see. I know this, but to hear it from him makes it all the more real.
We want to thank you for all of your thoughts and prayers, love and support. Words can not express how much you have touched our lives. We love hearing from you and share with Lucy all of the prayers being said for her. Times are tough, but we feel so embraced, and for that we are so thankful!