Thursday, December 15, 2011

The best laid plans don't always work out I guess. Hannah went to school on Wednesday, but called me in the morning to say she had already had two eye episodes, one of which was longer and blurrier than ever before. It was really beginning to worry Dave and I since these were coming on quicker, more frequently and were now lasting longer.

I contacted the neurologist and asked her if we could come in right away. After some back and forth, she made it happen and Hannah and I headed in after school on Wednesday. We are not at our usual hospital, but their sister hospital just up the road. Our usual hospital is so full that there are NO beds available (kind of appropriate around Christmas time I thought...inn...manger...) We didn't want to wait, so we opted to come here. They told us it might even be a bit nicer for us since their pediatric unit is much smaller, and probably quieter. Unfortunately that hasn't turned out to be true though.

We made it up on the floor and into a bed by 8pm on Wednesday night. We were here and all set for neurology to come up and start the EEG but our nurse informed us that everyone in EEG was gone for the night, and nothing would happen until the next morning. WHY IN THE WORLD WERE WE HERE THEN, I asked her nicely :).  Just another of the fun little frustrations of the hospital world. So we got over it and settled in for the night.

The next morning they came in bright and early to hook Hannah up. The tech asked why no-one paged them last night when we got here, since they were waiting on Hannah and someone was here until 11pm. WHAT??? Are you kidding me?? Nothing we could do, so just shrugged it off and got on with the day. She has been hooked up to the video EEG now for over 12 hours. She has had exactly ONE eye episode, and a very brief one. Murphy's Law...again...I don't know. We wait.

Tomorrow she is scheduled for an MRI of the orbits. This will check the optic nerve amongst other things. She will also have a neuro-ophthalmology consult. They originally said they would like the EEG for 24 hours, but I don't know if they will extend it or not. It's frustrating at best.

She did spend some time today doing crafts that Childlife brought in. It really reinforced our commitment to providing the hospital with fun things for kids to do. Hannah was talking about what we should buy to bring in with our next Cans for Cancer shopping spree. Some of the things she likes the best like ceramic painting I'm sure other kids like also so that's what she wants to buy.

She just settled in to sleep. We'll see what tomorrow brings and I'll check in later. I do have to mention that the likelihood of me getting out any Christmas cards on time this year is nearly zero, so please don't think I forgot you. And, I am thinking of starting a new trend also of only putting lights on my Christmas tree. Maybe the star on top, but no ornaments. I think it will be nice, don't you?


♥Kim