T-11 Happy morning, quiet afternon, rashy evening

Sarah here at 9:36 pm at the hospital. Ethan just finished his second dose of Campath and has dropprd off to sleep. As predicted, the rash started flaring up more on his arms and legs and is starting to show some on his trunk and face. The rash starts out looking like he's been slapped around, then progresses to being a bit raised and redder and you can actually feel that the rashy skin is hotter than his other skin.

I arrived with Caleb this morning around 10am to find Ethan having a good time playing on the parent bed with Todd. We all ended up climbing on the bed together and Ethan jumped from the narrow window seat on top of all of us. Todd attempted to lie down and have a bit of rest while we waited for the doctors to arrive on rounds, but Caleb loves to tickle and be tickled and Ethan joins right in. Todd and I talked with the nurses and updated each other, and we filled the white board with lists of Ethan's meds, questions for the doctors, what and when he last ate, etc. Then Todd and Caleb took off to grab some lunch upstairs at the hospital restaurant. Caleb discovered last night that they have Cheetos there, plus a very nice view.

Today was also our ERT day, so it timed out well that Ethan ate some jar food and got sleepy just about the time they dosed him with Benedryl before starting his enzyme infusion. He slept from 1-4pm, and I had to work at it to wake him up. He stayed pretty sleepy and snuggly all afternoon, though he ate a good late lunch (or early dinner). We mostly watched videos and I read my book on my iPhone. We had planned to give Ethan a spongebath and grease him up, as one of his meds is some stuff called Derma-Smoothe that helps with the mild dermatitis he has, but the hospitsl pharmacy was out of the stuff. todd and Caleb came to the rescue, arriving with fresh spring haircuts (very short and cute) and our bottle of Derma-Smoothe from the House. Todd helped me bathe Ethan and Caleb helped me use the room phone to order in some dinner, then they headed off to grab some dinner and maybe some ice cream.

Ethan refused to eat anything but the french fries and apple juice from dinner, but he ate about all there were. He left me the cheeseburger and carrots and fruit. Then we had fun putting a blnket over us while we watched movies, like a tent. A little after that, today's dose of Campath started hitting him and he started getting fussy and clingy, we noticed the rash was spreading, and he seemed a little shivery. Our night nurse asked if I wanted the doc to take a look, and when she had, we decided to give him an extra dose of Benedryl to help with any itchiness the rash might cause and knock him out a bit. Seems to be working so far, though he's turning over a bit more than he usually does as if he's not in a true deep sleep.

Ten o'clock now, and time for me to sign off and hopefully get some rest. The next checkin is due at about 10:30 though, so I may just read until that's done. Goodnight, all, and may all our angels sweetly sleep.


Good to hear from you Sarah, hoping you all had a restful night with the aid of Benadryl! Has Ethan ever reacted to the ERT? Big hugs and lots of love x