It is hard to believe that Destination: Transplant, the COTA fundraiser in honor of Royce, is only 4 days away!! We officially began the fundraiser planning process back in June of 2019. Of course back in June, I never imagined Royce would still be on dialysis come March of 2020. But then again I’ve had a hard time imaging life after dialysis period.
On Thursday of last week, Royce and I both had a rough and emotional day. I had spent a lot of Wednesday night not feeling well from a GI bug/food poisoning so come Thursday morning I was extra exhausted. Royce obviously wasn’t feeling his best either, because he actually cried and asked me to take him to dialysis instead of school. Royce has NEVER ASKED to actually go to dialysis!! My smart boy knows that dialysis is what makes him feel better and that was his way of saying he didn’t feel well. Since it was already a dialysis day, I wanted to see if he would perk up at school so I offered to spend some time with him there. Royce really enjoys having me at school so this offer did perk him up. When we arrived at school they were having a pep rally in the gym. Royce ran off to join his class and I broke down in tears while talking to his teacher. I let Mrs. Carlson and the nurse know to call me if he wasn’t feeling good during the day. Thankfully he made it through the day and went to dialysis with his great aunt Lynn.
Royce’s appetite has been an issue again lately. With permission from his dietician and his primary nephrologist, Dr. Tran, we are allowing Royce to eat whatever he wants and whenever he wants to eat. This means that at school, if he says he is hungry at 11am he will be given lunch then instead of waiting till 11:50 to eat. We have learned that if we don’t feed him when he says he is hungry; then he is beyond hungry and refuses to eat. Dr. Tran didn’t want to prescribe an anti-nausea medication in fear that it may mask something else. However, last night at dialysis we realized that Royce’s appetite seemed to drop after we switched him from taking Tums as a phosphorus binder to a different medication. The Tums was causing his calcium to be high but it seems to also have been helping with some indigestion/reflux issues. Dr. Tran needs to consult the neurology doctors to make sure the medication she wants to prescribe doesn’t cause issues with his anti-seizure medication.
This past weekend Royce enjoyed a slumber party with his cousin Alaina. The two of them slept on a giant air mattress in our living room. This was the first time Royce has slept in a different room than me. He was very nervous about the arrangement but eventually feel asleep after coming to find me in the closet while I was folding clothes. Our kitty Turbo frequently sleeps next to Royce in bed so of course I found him on the air mattress just purring away. This was a very small step in Royce’s journey to eventually sleeping in his own bed, in his own room. I am 99% sure he has NEVER slept in a room by himself and more than likely slept in the same bed as his foster parents in China. Because of Royce’s sleeping arrangement history, for now at lease, our routine of him sleeping in my bed with me will continue.
I plan to post an album of pictures from the month of February so keep an eye open for that in the week or so. And I hope to see everyone at the fundraiser this weekend!!