Day 5 and Counting

Hi again. Avery rested well yesterday evening, except between 4-5 pm when she had more activity. Neuro came around and we talked a bit. They were still very positive thinking (although the attending neuro was not Avery's regular neuro) and not too concerned. The team indicated that the seizures activity from the second EEG was decreased from the first, which was a great thing. They also indicated that all the activity she had was from the left side and was not generalizing (meaning, not spreading to involve the other side of the brain and then body). So, I left late last night (actually early morning) with her resting and me feeling pretty positive. How quickly things can change. Jon went in early this morning. She was doing pretty well early on, with only some limited activity during the morning hours. Once my mom and I got in during the afternoon though, things began to go poorly. Avery had seizure after seizure from about 3:15 PM until almost 7 PM. I tell you, I was nearly at my break down point. The protocol they had in place for such episodes (which is an extra does of Ativan) did not work, nor did her regular dose at 4 PM stop them. So, at 4:30 I told the resident that it was time for them to figure out something else to do to help her. She called the attending and got an order for a loading (large) dose of Dilatin (her blood levels of this drug have been consistantly low - non-therapeutic - no matter what they do). The orders were written and faxed to pharmacy at 5:15. When the med still hadn't been sent by 6 pm the nurse called the pharmacy. They had received the fax but thought it was for her regular 8 pm dose so they did NOTHING! The nurse had to refax the order so the pharmacy could fill it and they couldn't tell her when they'd have it done. So, with Avery still crying, arching her back, and holding her breath long enough to drop her heart rate and O2 levels, the nurse gave her another dose of Ativan at 6:20 to try to get her relief, which was still pretty ineffective at best. The Dilantin finally arrived at about 6:40. By 7 she was finally getting some rest, and we were getting kicked out for shift change! I can not even tell you how frustrating this was. So, when we came back from dinner I brought a list of demands for the fellow MD to address over night and for me to share with the neuro team first thing in the morning. At home, I would have given her Diatstat after 10 minutes of the junk she had today. Instead, she was unhappy for 3.5 hours. I have to be honest, I was just so close to losing it. My nerves are now back on edge. All I can do is pray. Please do the same. Mom sent me back to the house to get some rest at about 10:30 in prep to be back early in the morning to talk to neuro. Mom is hanging out with Avery now. She was still resting well when I left. They had moved her to a new PICU room right after we got back from supper...a smaller room with only 2 children instead of the room of 4 she was in. Maybe that will help her do better tomorrow. Less noise and commotion and all. We will see. I kept talking to her today, telling her that "those old seizures hadn't read their eviction notice properly. The surgeon served it and they have 7 days to get out. They are just about out of time, so they better get packing!" Sometimes, when you want to cry, you have to find a way to laugh instead. That was my way. Thank you to everyone who has emailed, posted comments, called, etc. Your support has been crucial in keeping us sustained. Knowing that Avery and the rest of us are loved by so many is such an awesome source of strength. We can never thank you enough!