Doctor's appointments and Visitors

Throughout June and July we were busy, busy. Morgan was doing very well, but if it wasn't one thing it was another. We battled with her sodium levels for a long time, but once we got that under control her calcium dropped to a scary level. We were almost admitted again, but luckily we were able to get it back under control at home. Every week until the middle of July we had weekly doctor's appointments with both of her nephrologists. This required her to ride two hours back and forth once a week. The more time went on the better I was able to prepare, and that made her trips a lot more comfortable. Finally her appointments slowed down, and it couldn't have come at a better time.

We had a happy and smiling little girl that enjoyed playing and spending time with her sisters and family. With big sister's birthday approaching, came a visit from my sister and her family. This was their first time meeting Miss Moonpie. She was doted on the entire time. We didn't get the chance to travel much with her, but she got plenty of attention. We were all so happy to have visitors that gave us a little bit of normalcy back into our lives. They were able to stay for a week and at the end of the week they took big sister back with them for a visit.

This made for an entirely new week for Morgan and me. During the day Randy would go to work and Morgan and I were able to stay at home alone together. I've always made time to bond and love on Morgan. Her situation was unique. We didn't get to hold her for a week and a half after her birth. We couldn't do skin to skin until she was off her ventilator. Even though I missed her big sister so much, I knew she was having fun, and I embraced the opportunity to have more time to snuggle and play with Morgan. I also knew that this was a taste of what it would be like when big sister started Kindergarten in August.

When the week was up we prepared for more visitors and big sister back home with us. Morgan got to meet my brother and his family. They took a trip to get her labs drawn with us. Every family member got small dose of what life was like in our house, and we were busy and on a very strict schedule. They had a very short stay, but we packed in as much fun as we could with them. When the weekend was over it was time to get back to business.

Morgan had more doctor appointments ahead of her, but she also had plenty of fun as well. She was advancing physically and her big personality was beginning to shine through. She was more than all smiles. She was learning how play games back and forth with us, and she loved picking on us. Not only did her fun side come out, but we got a taste of her temper. Morgan didn't pee at all, but she had no issue with the #2 in her diaper. There were many times we would have to change her in the middle of the night. When we would wake her up to clean her up she would glare at us and stomp her foot in anger. It was the cutest little tantrum I had ever experienced. I could really see a difference in her. We were learning who our little Morgan was and she was beautiful.

She loved each of us, but the bond she had with her sisters was something special. Each of them made her so happy. When it was just her and big sister she would just let everything happen. If big sister was getting in her face, tickling her, or just being a turd Morgan was just fine with it. There were only a few times I ever saw Morgan cry because her sister was just getting too crazy. The bond between the two was heartwarming. Big sister was her protector as well as her best friend. I couldn't pick out just one thing that I miss the most about Morgan, but her relationship with her sisters was something I cherished so much!

Just when you think you get the hang of something

After Morgan was discharged from the hospital on dialysis summer was right around the corner. In early June I had planned to attend a wedding with big sister for my cousin back home. The trip was planned. I spent June 4th doing laundry and preparing Morgan's Nan to watch her while I was gone and Randy was at work. As the day went on I noticed Morgan getting increasingly fussy. She seemed like she was not feeling well at all. I laid her in bed thinking maybe she just needed a little Tylenol and a nap. It calmed her a bit, but I noticed her breathing was labored and something seemed off. I checked her blood pressure and heart rate and realized I was right. Her heart rate was at just over 200 bpm. I called the Doctor's office right away. They had me drain her and her fluid came out cloudy. I knew that this meant infection. At that moment I started packing us up to head to the Hospital. I called Randy at work and told him we were heading that way. I remember feeling so bad for her. She looked like she was in pain. Her heart rate and breathing were very concerning, but nothing as concerning as the infection I knew was in her peritoneal cavity, and possibly in her blood.

When we arrived we were immediately sent back in the emergency room and antibiotics were started right away. Arrangements were made to have her admitted onto the floor in the pediatric unit, and some of the fear began to subside. They attacked the infection from every angle and were able to get it under control. After a couple of days Morgan was back to her normal self, smiling, happy, and wiggling all about.

We were able to be home with her for nearly two months before the infection set in. As a caregiver I felt so responsible. I wanted to know if there was something I was doing wrong to cause this infection. I had a routine, and I never waivered from it. I couldn't even come up with a single thing I had done differently with her dialysis. Her amazing doctors were able to calm my fears a bit after discussing exactly the steps I took that morning and every day. They informed me that even when doing everything right and without change bacteria can still find its way in. One thing I knew for certain was that I would make sure to be extra cautious in her cares and exchanges. Watching her in such pain was something I just could not risk putting her through again.


Learning Dialysis was more than just training. Keeping everything as clean as possible and consistent was very important to her health. After a short time in the hospital we were sent home on antibiotics. Even though I had been trained to insert her antibiotics into her dialysis this was my first time actually putting this training into action. Each cassette that connected to Morgan and her bags had a medicine port that antibiotics and other dialysis related medication could be administered through with a needle. I had to do this for a couple days to finish her cycle of antibiotics. I was so happy all went well.

Upon arriving at home Morgan was welcomed by her Grandma and Papa, who came to visit her for the first time since her second surgery. We got to spend time shopping and playing and just enjoying each other's company. As a family we had a busy and exciting summer ahead of us. Filled with plenty of visits from Aunts, Uncles, and cousins. All I could do was hope that everything would carry on smoothly and Morgan could not only meet everyone, but also enjoy their company.