October 10, 2020
How quickly things change!!
Even though Marlon had several naps yesterday, he slept well last night. Best in a long time. When he woke up he was grumbly and saying he felt horrible. In a short while he said he wanted something like a croissant or cinnamon bun. I got him something and he ate it and enjoyed. He had another popsicle.
Talk of discharge came about and it was decided Marlon was good to be sprung today. Yay!! Not long after that Marlon took a bit of a nosedive but not that bad, just low. He made it through the whole day without throwing up. That is a big deal. He thought he would several times but stuff stayed down.
They checked his blood, it seemed ok. They checked his urine and noticed a trace of blood but perhaps it was just remnants of whatever it was the day before (they aren't sure). Marlon's uncle, Peter, came and picked us up. Marlon was nervous about the ride, about leaving the hospital, about going home, about feeling worse again. He did well. Plugged into his audiobook for the ride. Got home and asked for a late lunch. The house was cool and Thomas started the fire for Marlon.
Just amazing how different the days can be. Marlon was a bit chatty. He did some origami, put together his monthly science/physics kit. He ate dinner and he was even able to drink orally (something he has really struggled with).
What a difference being home for me. I have to figure out which medications to take. I have to measure them out. I don't have the help I had at the hospital. I have to get the evening feed set up. We did have a nurse make a quick visit to set up the pump and make sure I know how it works.
I can only hope the days continue like this but I see that every day is so different. One day we can look in the mirror and like the person looking back at us, the next we wonder why we can't switch out for a different model, personality, whatever. One day we feel like we can take on the world, and the next we just want to bury our head in the sand. One day we feel like we can't get up off the chair and the next we are ready to do so much. There is talk of us going apple picking tomorrow and this is something Marlon has really wanted to do this fall so we will hope it is a day that he can come along. He can't climb a tree, he can't even walk that much, but I hope he is well enough to enjoy the day.