I will begin this blog by letting you all know, even though I lived through this and it was the most difficult time of my life, it is almost equally difficult to write about. I want everyone to know that this blog is personal, and there are details I won't be sharing in order to keep some moments close to my family's hearts as well as mine. With that being said I also want to finish her story. This is not just a story of a beautiful little girl. This is my therapy, remembering her is important, but trying to let go of the end has been the hardest thing I have ever had to do.
As summer drew to an end, and big sister had been in school for just over a month we were really getting used to our new routine. Little did I know that routine was going to take the biggest turn, and I never could have imagined how my life would change. The day started just as every day had. I had a happy little girl at home with me, and we even took a little trip to run errands. Not an issue in sight. I hooked her up to dialysis at her normal time, and hung out with the family as she slept. Then it began. I knew something was off I just didn't know what. Morgan loved her sleep, and she kept waking up crying. After diaper changes and watching to see if the output from her dialysis was clear or cloudy I began checking other symptoms. I took her temperature and it was up. Even though I was worried I started with Tylenol hoping it was just teething. Her temperature went back down, but she still wasn't sleeping well. I could not sleep. I checked her again, and her temperature had spiked again. I gave her more Tylenol and immediately called the Doctor. We were advised to head to the Emergency Room. Without hesitation we loaded everyone up and went on our way. Through it all Morgan smiled the entire way.
After some time in the ER, I.V.'s being placed, and multiple labs being drawn she was taken to the Children's Hospital two hours away. Big sister and I stopped at home for a nap and to pick up some clothes and necessities, and met Randy and Morgan at the hospital later. After a blood transfusion and some rest she began to feel a bit better. It was a relief. Tests came back positive for Rhino/Enterovirus. Most often this virus has the same symptoms as a cough, but can be very tough on young children. Especially children with weakened immune systems and health issues. Morgan was a fighter. She was in and out of the PICU in no time and onto the Pediatric floor. After a few days she was fever free and ready to go home.
We came home on a Friday and it was wonderful to be home again. We were amazed at how short her stay was. Throughout the day on Saturday Morgan and I hung out and rested. Neither of us were feeling 100%, but I still had my smiling little baby. Early afternoon her fever started to rise again. I stayed on top of it with Tylenol and it was doing the job. At that time I felt her body was just doing its job to fight off the virus. When it was time to set her up on dialysis her fever spiked a bit higher. I again called the doctor. With some guidelines to watch closely we carried on with our evening, and I was again unable to sleep. After keeping a close eye on her and her fever not breaking I knew we needed to head back to the hospital. This time we had all the kids with us. We loaded up again and headed that way.
When we arrived we were tired, but everyone was concerned for Morgan. We got to the E.R. in just under two hours, and they prepared her for admission. After testing she still only had the same virus. We just knew that her condition was making it more difficult to shake this virus. After just a few days she began to improve. She was our happy sweet Morgan again. No fever, and doing wonderful! We played, we relaxed, and we snuggled.
Then Morgan did something I feared. She pulled her g-tube right out of her stomach. Still smiling and happy when I arrived we waited. When she pulled it out it irritated the sight, and caused a small infection on her skin. As the it cleared up a new g-tube was placed and we were heading on the right track. Then she began spiking fevers again. Once again the testing began. This time she tested positive for Rotavirus. A new battle began. She seemed to be handling everything fine. To give big sister a break from the room I took her to the Aquarium and we went back and spent some time with Morgan and went to bed. The next day we stayed most of the day and later into the night with Morgan. When we left she was all smiles and seemed to be recovering well.
The next morning when we woke up we received a call saying they were going to place a central line because she had lost fluid through the night and needed a more reliable I.V. This was very routine to all of us. Sister and I got ready, and as we headed over I received another phone call from the hospital. Morgan was not doing well. We rushed in and Child Life was there to take big sister. As I walked back to PICU I broke down. When the doors were opened I saw what seemed like 50 medical staff standing in and outside of her room. I felt like I was going to be sick. I felt like I was going to pass out. I saw my baby laying on the bed and I couldn't believe my eyes. They were breathing for her, and this was an emergency. The doctor walked to me and told me what was going on. I couldn't hardly hear or focus, but I tried my best. My husband was at work and was on his way as soon as he got the news, but I was scared. I cried and had to step away for a moment.
I couldn't stand to step away from her, but I couldn't hold it together either. I was so scared, but I knew I had to pull it together. I knew that she needed me, and this was not the time for me to lose it. The doctor told me it was not looking good. Those words were like a knife in my heart. I never imagined being in that moment. When I walked in and took her hand everyone around me disappeared. She was all I could see and feel. I held her hand and told her I was with her. I told her I loved her and how proud of her I was because she is so strong and she can do this. I let her know her daddy was on his way, and she can do this.
Time was standing still. I entered the hospital that morning and before I knew it, it was afternoon. Randy had arrived and we were waiting on his parents and my parents as well. We sat with her, and people came in to visit and show her and us their love and support. When everything was calm big sister came back in. She talked to her and loved on her. Just as she always did. I remember Randy and I watching her with her eyes open and her trying so hard to look at us. We knew this wasn't looking good. We stayed all night, taking turns sleeping. All of her sisters and grandparents had come to see her as well as her aunt and nurses and medical staff who cared so much for her. Just before lunch everyone left the room, and Randy and I stayed with her.
The room was silent and peaceful. That morning her heart rate was fluctuating up and down. Randy and I knew this could happen. The doctor told us if her heart went down again it would just be torture to continue to bring her back. She had 3 horrible infections in her blood and they had done all they could to get her through it. When her rate dropped below 100 Randy and I stood by her side. We cried, and kissed her. We held her hand and told her how much we love her and how amazing she is. We told her how proud we are. We both knew this was it and even though inside I was screaming to bring her back, I knew I couldn't do that to her. She was gone. We picked her up and held her unlike we have ever been able to before. We weren't hurting her. No more pokes, no more dialysis, no more pain. She was at peace, and she slipped away peacefully.
Morgan changed our lives. She is our drive to be better people. She is our hearts. She touched so many lives, and she fought a hard fight. I wouldn't take a moment of our year with her back. I would do it all again. I hope her story can continue to change lives. I hope her fight can encourage other families to keep fighting. ARPKD does not always have such an early end to life. There are survivors. Every path is different. Morgan's path was short, but it covered a lot of ground. I wish so much I could have her again, but I don't wish her back to her pain. Thank you all for not only reading our story, but for being a part of it. This is Morgan's story and while our stories continue so does hers. She continues to make an impact in this life.
