Exhausting Day 5

 Day 5 in the hospital was an exhausting day for all of us- nurses, myself, and Alexander's grandma. Alexander was irritable all day long. The morning started off okay but before 8 am, Alexander had a seizure happened on and off for 20 min. Alexander was given medicine to stop the seizure, he was given a dose of his new medicine that is trying to not bring on his seizures and a one time dose of another anti-seizure medicine. This one time dose of medicine made our Superman very wobbly. He would try to sign for items that he wanted or reach for things but would fall over. Once the incoordination stopped, Alexander became irritable. He wanted to walk around or crawl around the room but his right arm wasn't study enough to let him crawl nor was I going to let him crawl on the hospital floor. With all the wires hooked up to him (heart rate line, oxygen line, respiratory rate line, EEG line, blood pressure line), he couldn't walk very far. Then he'd request "open" and point to the door. He would get upset when we told him he couldn't go out there. It was so hard to see him so upset and not understand why he couldn't do the things he wanted. 

The EEG is still on him. Yesterday morning, after the 20 minute episode, they discovered that when Alexander stiffens his right hand, he is having a seizure at that moment. The neurology team also learned that even when we don't see any symptoms, Alexander is still having seizures. So they wanted to do another 24 hours of monitoring. We are hoping that the EEG will come off today, that the neurology team was able to get enough information to tell us how often Alexander is having his seizures, which medication will be best to control most of his seizures, and perhaps why they are occurring. I  am not holding my breath if they don't know why his seizures are occurring, but it would be nice so that I'm not constantly looking for answers.

Not much else happened yesterday. If the EEG comes off today, his pacemaker will probably be interrogated and a cranial ultrasound will happen (to see if there is any damage from the seizures-even though 2 CT scans have told us no). Remember Alexander can't have an MRI because of his pacemaker, so we must rely on him to tell us what's going on.

Praying for more answers today, for his seizures to start getting under control and for him to start moving his right hand better. Physical Therapy may be needed with his right hand (Hey Wilma, we might need another session added to Alexander's bi-weekly session), but we will see over the next few days.  Thank you for following us along on our Superman's journey. <3