We woke up and drove to the lab for Ethan to have his timed “forever drug” level check with numerous other blood tests. We got home and Ethan was late for school, so he immediately hopped on his classes zoom. He was hungry when he was done.
We then got ready to go to dialysis. He is in a bed here. He was in a chair at the other place. Everyone was really friendly. When I shared my plan of home hemodialysis the pediatric nephrologist told me that pediatrics don’t normally participate with teaching and following home dialysis patients.
You can imagine my surprise as this has been the plan for the last several months. That was the entire reason Ethan got the fistula. I was frustrated that it wasn’t communicated as part of our long term plan to this new team. I felt like I hadn’t been listened to.
We would have to transfer to an adult dialysis center and be followed by an adult nephrologist which is not what is being recommended. We are going to work through this.
There were several people in the room at the time we arrived. I did the best I could answering all there questions. They also did a good job answering my questions.
I am finding it incredibly difficult to plan how my transition back to work will be. Today we left our house at 11 am and got home at 5 pm. How do people do this 3 times a week and work? It’s impossible. I could have someone else drive them but they would not be allowed to go in the hospital with him.
Luckily after that we had no more appointments. We are still trying to unpack and schedule appointments.
Tomorrow is ophthalmologist, school, physical therapy, zoom with transplant team, tutoring to catch up on past schoolwork, and zoom with a renal dietician.
His numbers came back good for phosphorus, potassium, magnesium and sodium. We have a pretty good balance with the diet.
It was chilly out today. We had some snow. It was perfect for our mock Christmas morning that we are having on Saturday morning.
My bright spot is being able to drive Ethan around and go to his appointments with him.
It's crazy, but like you said, the time spent driving around with Ethan is a gift. Lots of time to talk and plan for the amazing future ahead. Think of how far Ethan has come. You've weathered much worse and kicked Hell in the balls all the way. Merry Christmas! 🌲 By (mock) New Year's Eve, it will be summer (80 degrees in the forecast on Wednesday!).
ReplyDeleteI really don’t know how people work and do all these appts and scheduling - I t’s a full time job! Does it get easier? Yes, a bit, but it’s ALWAYS a huge time suck. I completely empathize with you. Keep enjoying the bright spots. So glad you’re home!
ReplyDeleteOh my. You have a lot of coordination and running around. That's completely frustrating about the lack of communication between medical teams. I hope you can get some help! I love that you are celebrating Christmas and got some snow to set the mood. I'm sure many people are complaining about the late snow, but I think it's just perfect and well deserved timing. xoxo
ReplyDeleteChristmas is great anytime!
ReplyDeleteIt’s the “Spirit “that counts
and being Back Home 🏠 is
The Perfect 🎁 Gift!!’
Don’t forget to save some Spirit (and some spirits 🍾) for the
Christmas Etc (All Inclusive Holiday Celebrations )that we didn’t get to celebrate from Thanksgiving to now!!!! Probably won’t have Snow by the time this gets organized but
we will have Fun ii!👍