We have had a rough few days, but in a very differnet sort of way! Alex's belly is doing great. His ammonia levels are holding steady. All of the normal culprits are under control.
Yesterday, Alex was visiting his buddy Andrew. He was riding on a little ride on toy. As he rode into Andrew's room he flipped over the front of the toy and landed face first on the tile. He was bleeding quite a bit from his mouth but wouldn't let us look to see where the blood was coming from. He soaked awashcloth with blood. I finally calmed him down enough for him to tell me his lips hurt not his teeth. Needless to say his lips are all swollen. We tried to get a look overnight, but everytime we toughed his lip he flinched and swung his head around. We know he is sore, but it hasn't slowed him down at all. We gave tylenol twice yesterdya and will give him some at bedtime tonight to make sure he is comfortable. I guess after all these weeks he thought we needed alittle extra excitement.
Then today we had a nurse that is unfamiliar with Alex and her trainee. Two separate times they messed up Alex's medications and almost did a third time, but I caught it. This is completely unacceptable. A mistake like this could be fatal in a child like Alex. Luckily we are already double dosing him on antihistamines because of his rash. Luckily, this saved us from a potential severe allergic reaction. I complained to the charge nurse and requested that I PLEASE have one of my "regular" nurses tomorrow. I felt like I couldn't turn my back for a minute. I do not want to have to do that all weekend. We will see what happens tomorrow.
Other then that things are good. We have our favorite night nurse for the next 3-4 nights so that means Mommy will get some sleep which always makes me happy.
About two and a half weeks...