Well that was a very disappointing roller coaster ride! I hope we never have to repeat the last 24 hours. Getting the call that Royce was second on the list for a kidney was so exciting. I told everyone that it wasn’t a guarantee but we had orders to report to the hospital at 7:30am. I see now that I was acting like it was a guarantee but on the inside it never really felt real. And maybe it won’t feel real until I see Royce being wheeled off to surgery!
Of course I was so excited at the thought of being done with dialysis and being able to allow Royce to eat bananas and French fries. But I also thought about how I only have 4 weeks of PTO saved and how my FMLA/short term disability benefits don’t reset until April 1st. FMLA/short term disability would ease the stress of depleting my PTO, going without pay, and the thought of potentially losing my current position at work. As a single parent and the sole income, of course such thoughts raced through my mind in between the phone calls I made to let my family and dear friends know the good news.
I was very excited but also a little nervous to tell Royce about the phone call. I have told him that his two kidneys are very small and “bad” (thumbs down) which is why he has to go to dialysis. Royce knows that dialysis makes him feel better. When I told him that the doctor called and said he was going to get a new “bigger” kidney, he was excited. Royce asked if they would have to cut his belly open (he signed a scissor going across his belly). I said that he would be asleep and yes they would have to cut his belly open. I could see Royce thinking… Then he stated/asked that he would have three kidneys then?! I smiled and confirmed that he would then have three kidneys. I told Royce that he couldn’t eat or drink when we woke up in the morning. After our little conversation he asked to watch “Go” aka Teen Titans Go and started jumping on his little trampoline.
Just before 6:30am, I heard my phone ring while I was in the shower. My heart sank and I knew it was the call to say Royce wasn’t getting a kidney. I figured that no matter what the person on the phone had to say, it wasn’t going to change during the next 5 minutes, so I finished showering. I read the transcription of the voicemail while listening to Dr. Cramer’s voice say, “as mentioned Royce was second on the list to get the kidney…unfortunately the kidney is going to the person that was first on the list and therefore Royce will not be getting a kidney transplant today. The good news is it appears he is really close to the top of the list…” The first thing I did was call my mom and sister Jackie to tell them the news. I shed a couple of tears but like I said before, inside it didn’t feel real from the start.
After getting dressed and combing my hair, I asked Royce if he wanted something to eat. He looked at me with confusion and concern because he knew he wasn’t supposed to eat this morning. I told him that the doctor called and said he will have to get a kidney later so it was ok to eat. He accepted my explanation and asked for a toasted buttered bun. I crawled back into bed with my wet hair and tried to quiet my mind to rest for an hour before facing the world. It wasn’t long and Royce was on the bed next to me playing his video game and laughing.
Everyone at the school was sad to see us walk into the building. But life had to continue on today. Royce needed to go to school and I needed to go to work. The school nurse emailed me to say he was very tired towards the end of the school day. I’m not surprised because he had been awake and moving since 6:30 this morning. Of course Royce gets a good second wind after school when he can run and play. This evening Royce hummed and sang the entire car ride home. Grandma Rosie could hear him while I was talking to her on the phone during the drive.
And now that it is 8pm…we are heading off to bed! Thank you to everyone for your support, thoughts and prayers during the last 24 hours, days, weeks, and months. There is a kidney meant for Royce and when the day is right, he will have his new kidney!