Bad Days and Better Days

We've been on a roller-coaster the last few days. On Friday, Annie ended up sleeping the entire day. She woke up early but fell back asleep around 8am. She was awake for only about 15 minutes around noon, but was very spacey and unfocused. She then slept solidly until we finally woke her up around 10pm, wondering if we needed to take her to the ER.

I kept her on an air bed in our family room all day Friday to monitor her and she was rather unresponsive to everything going on around her, although she was still having some mild seizures. Her breathing was obstructing through the day, so I had to keep a close eye on her and keep her positioned just right.

That night, we began to be worried that she still hadn't woken up all day. As a pharmacist, Justin knows that phenytoin, which Annie just started Wednesday, is metabolized very differently in each person and if not metabolized correctly, can cause a coma state, and even be fatal if levels build up too high in the body. Justin calculated what dose of phenytoin Annie should be on based on her weight, and we discovered that her dose is almost twice the recommended amount. We thought we better get her to the ER, but once we got her in her wheelchair, she started waking up. She was very groggy and immediately started having more seizures, meaning she must not have too high a level of phenytoin in her system. She was rather groggy and grouchy, but eventually calmed down and went to bed for the night.

Saturday was much different. We're trying to not give Annie Ativan with the way it might be reacting with the phenytoin, causing her to be so incredibly sedate all day. So Saturday we just tolerated more seizures, although they seem to be much milder. It's possible that Annie had more seizures than we were able to see though, since her jerking was less pronounced, it was harder to catch them all unless we kept our eyes continually on her.

Today, Sunday, Annie seems to be doing maybe a little better, going even a whole hour or two without seizures, unless we are just missing mild ones. But other times, she is still seizing 5-6 times an hour.  She is also rather irritable and cranky at times for reasons we don't understand.We think she might just be wearing herself out from the seizures.

Each day seems to be so different for her, we just don't know what each new day will bring. In a couple weeks, we'll need to take Annie off the phenytoin, so we pray that her Sabril will have caught up by then and kicked in without an increase of seizures as we wean off the phenytoin.

We don't have any appointments or testing this week, that we know of now. But the week after will be a busy one with her bladder scans, brain MRI, and urine check. Then in a couple weeks she has another sonogram of her blood clot to monitor it. We appreciate all the continued prayers for her healing.