Parker's Promise

Parker is back in the ER. They were going to just change his meds and send us home tonight but just before they left he had a seven minute seizure. They admitted him. Darrell is at the hospital with him. It is midnight and they are just getting to a room. I feel so bad for them, but so so grateful Darrell offered to take him tonight.

It has been a rough week with the seizures increasing daily. Last week the neurologist called me and was so incredibly helpful. With the state his brain is in, Parker will most likely have seizures for the rest of his life, but we have to get them controlled. They will continue to try different med combinations until they find one or some that work. He also talked to me about other options such as the ketogenic diet. I do appreciate how proactive they are being. He said he knows the meds are just a bandaid and they would love to find a more permanent solution. He ordered a 5 day inpatient video EEG to pinpoint exactly where the seizures are and what is going on. That is scheduled for April 13th.

He also said that if he has 3 seizures in an hour to take him to the ER. I thought "whatever, they won't get that close." He was only having 4-6 a day. But then this week they started increasing. Tuesday they were every hour. Wed more. Today he had 2 clusters of 3 seizures in an hour, plus all the ones in between. By 3:00 this afternoon I had documented over 12 seizures- and those only include the ones I actually saw, verified and wrote down. He had sooooo many. One of which was 7 minutes long this morning. I had emailed the neurologist that he had 3 in the hour he woke up, but she misunderstood the email and thought it was an improvement to only have 3 in the day. I immediately called the nurse before they closed to clarify and she said to take him to the ER. Three in an hour is an emergency situation. Poor Darrell spent his day off work in the dentist office and ER.

They were just going to change up his meds (which is what I wanted) and send them home, but then Parker had a full 7 minute seizure. They admitted him. It looks like they are going to put him on some heavy duty meds to calm down his brain as they wean him off one drug and put him on another. It is one of the drugs they used to put him in an induced coma before. They are not inducing a coma this time, just calming down the brain. Please pray for my baby.

Darrell gave him a priesthood blessing before they left that had given me a lot of comfort. I am so grateful for the Gospel and priesthood in my home. And I sure love and appreciate my sweet husband that offered to take Parker tonight.