It’s hard to believe that Mari has been in the hospital a little over a week. She remains awake for the rest of the day. At one point when we think she is finally going to sleep, she closes her eyes for about 5 minutes and then wakes back up for the rest of the day. The Attending at the beginning of the day is a little concerned and just wants to watch that. She also seems to be getting more concerned with the fact that she is still unresponsive. It is just like the lights are out and completely gone.
Keith and I remain at the hospital for the rest of the day until it is time to go to dinner at the Ronald McDonald house. They have different groups of people that come in either for lunch or dinner or even both each day to cook food for those that are in the house. We think dinner is at 5:30pm so we head out about 5:15pm. I am finally getting to the point where I am feeling comfortable enough to leave Mari alone for small periods of time. So Keith and I walk over together.
We get to the house and find out that we are an hour early and dinner is not going to be ready until 6:30pm. So we just hang around and watch some TV (I believe we get sucked into watching “The Sandlot”) when Keith gets a call on his cell phone about 6:10pm from the hospital telling us that Mari had a seizure while we were gone. So Keith and I head back upstairs to see if we can eat early. We quickly eat right at 6:30pm then go back to the hospital.
When we get back to the hospital we find out that her seizure lasted about 10 minutes. At first they were not going to do a CT scan and then all of a sudden we have to get one right away. They take her off of dialysis and go to get her scan done.
By now we have called Keith’s mom and dad. They are on their way to Keith’s sister Amanda’s music concert with a close family friend Gina. They decide to head up to the hospital instead. Keith and I know that it must be quite urgent for the doctors to change their mind that quickly from not needing a CT scan to now needing one.
Mari comes back from her scan and they tell us they had to give her a seizure medication to stop the seizure from before and then an anti-seizure medication to prevent future ones. Then around 9 or 10pm Mari starts to do this posturing. Then she seems to be having a hard time breathing and the sound is very strange but this only lasts about 20 to 30 seconds. Then she stops for 20 to 30 seconds. Then she starts again. This goes on for a good 30 minutes.
The doctors are paged and we now find out these are continuous on and off seizures. So this last 30 minutes is really not a good thing. She is now also biting down on her tongue. They give her more Adavant (the medicine to stop seizures in progress) and the anti-seizure medication to prevent future ones. Now she is going to get them on a constant basis.
Because they don’t want her tongue to block her airway, they go ahead for preventative reasons, decide to intubate her and put her on a ventilator (or a breathing machine). Keith and I are fine and understand that. To be quite honest, we all thought we had already crossed this bridge to where she was not going to have seizures and she would not need to be intubated. The rest of the night is pretty uneventful. Keith leaves for the house around 11:30pm. I go to sleep the best I can.