Last night was ROUGH. From 2 AM onward Brian was not allowed to have anything to eat or drink. He had his last cup of water at 1:50 AM. I was pretty much awake from that point forward. Every time I heard him stir I would bolt up and make sure he wasn't drinking from the facet in the bathroom. A couple of times I just made it as he was pulling back the shower curtain to get the nasty soap scum cup we use to rinse hair in the bath. He was planning to fill it up and drink from it. He was standing there caught with the blue cup in hand smiling like, "What? I wasn't going to drink from this!" Then as soon as I would take it away from him and say he couldn't drink anything he would cry and say "but I'm thirsty". I ended up putting the baby gate in the doorway of his room. During the daytime I am sure he would have just climbed over it, but in the middle of the night it worked.
So, at 8 AM Fred and Brian left for the hospital while I dropped the other kids off at a friends house with a load of food. I couldn't feed them in front of Brian. She was so sweet to feed our kids and watch them for hours, several days in a row!! (Thanks, April!!)
Then I headed to Nemours and met Brian and Fred just in time to take his vitals and access his port. Then we headed over to Endocrinology and got settled in for the long day. Brian fussed a bit and when Fred had to leave for an hour and a half for an appointment for work, Brian fell asleep. He woke up for just a minute and transitioned from the "bed" to the chair. It didn't look comfortable.
Diabetes Insipidus and started him on a low dose of Desmopressin each night. He told us to keep a journal of how much Brian is drinking and how much he is peeing and call him next Tuesday or Wednesday of next week. We had plans to go to Legoland this weekend to celebrate NO MORE CHEMO and Dr. Kummer said that was still OK. Tonight Brian took his first pill (he has to swallow it) and he did AWESOME!!! He popped it in his mouth and swallowed it right down. Fred had made a deal with Brian about a new Lego set. After Brian swallowed his pill he looked at Fred and said, "let's go to Toys R Us right now Daddy!" And we did. :)