Yesterday morning it was becoming pretty apparent that Livy was only getting worse. We have a certain amount of "emergency" medications for seizures we can give her at home before respiratory issues can arise. I had maxed out everything and she only continued to seize. Jon came home from work and we weighed out everything. Hospital stays for Livy are never short when it comes to seizures. I am not talking days but weeks and sometimes months long. We always do whatever we can to put off going as long as possible. We looked at each other and both knew it was inevitable.
The ER stay lasted from just before lunch until after 8pm last night. It had been over two years since we had been there for seizures. All those precious months of control. They did lab test, a shunt series, x-rays and an MRI. The only thing they found was that her sodium was running a little low (128). She tends to run in the low 130s but the dip below could be cause for increased seizures. After consulting with Livy's neuro up at Shands, they decided to start her back up on the seizure med we just finished weaning last month. She was admitted just after 8:00pm.
Jon and I got her settled into her room upstairs. By this time she had had over 15 seizures. They were coming faster together and the Ativan wasn't touching them. We knew we had made the right decision to take her in that day. I can't imagine the feeling of helplessness we would have been feeling had that been happening at home. I hadn't slept well at all the past two nights having been up with her so Jon took the first night shift last night. After I left, things went downhill fast.
After multiple efforts to get things under control, the nurses on the floor were no longer comfortable taking care of her. They quickly moved her to the PICU (pediatric intensive care unit) around 4am this morning. They were finally able to stabilize her. Her last clinical seizure was around 4:45am. She wasn't able to sleep much at all last night and was awake all day today. Her heart rate was up in the 150s and she was running a low fever this evening.
On the flipside, the girls had a Halloween party planned for this afternoon. Hailey was so excited getting ready for it and it would have been so difficult to cancel. Jon insisted that we still have it for her sake. This is our life, yin and yang, and life goes on. Jon and I have always tried our hardest to give both our girls what is best for them, as different as it may be. Jon was giving Livy his best at the hospital and I had to give my best to Hailey at home. It was pretty surreal setting up the party today. I did everything possible to keep my mind on apple bobbing and Halloween Bingo. Hailey and her friends had a really great time and for that I am happy. I don't think we will ever get over how divergent our girl's lives can be. All I know is that we did what we thought was right, for each girl, at that moment.
I will be starting my shift at the hospital tomorrow. For those of you that know how that goes, I am working up the strength and courage to get through. As always, we really appreciate your messages of support. We will continue to update as we can. We know many of you care so very much and we love you for that.