Automatic Pilot

I mentioned in the last post that Ivey's seizures have abruptly decided to show themselves frequently in the past three weeks. Since March 13th she has had at least 10 seizures that we have observed. She is having a combination of types of seizures, predominately she is having myoclonic seizures, but most likely having grand mal seizures too.

We still have not pin pointed specific warning signs signaling that she might seize. Some days she is in a playful mood and then suddenly begins to seize. Other times Ivey might be sleepy. They happen morning, noon or night. They do tend to follow a similar pattern, myoclonic, where her muscles twitch discretely. Other times her arms and legs thrash violently in a pulsing fashion, as does the muscles in her face. Her body becomes very tense. She is incoherent and non-responsive. Consistently she looses her color and turns a 'dusky' shade, drools and urinates. Unfortunately, Ivey also tends to have long seizures. On average they range from 5 minutes to 25 minutes. The longest seizure Ivey ever had lasted about 45 minutes. A LONG seizure is over 5 minutes, so Ivey's length of time is of concern.

Yesterday morning Ivey had another seizure lasting close to 25 minutes. She did have twitching in her muscles; however, this time her body became more limp. During the first 5 minutes of her seizure, I began to locate and organize her medication that is administered if her seizures continue past the 5 to 10 minute mark and also placed a phone call to Matt. As I was laying the medication out, her dusky color began to change and she became a bluish shade. Hurriedly, I pulled her oxygen tank and administered oxygen to her. She was probably 'holding her breath', but she regained her dusky color in no time at all. Then I administered her Diastat. Her seizure continued on for several more minutes subsiding about the 25 minute mark, where at that time, Matt had made it home. During this time I was also on the phone with her neurologist.

Ivey is okay today. She is actually napping right now. Upon the recommendation of her neurologist, we did take Ivey to the ER at Scottish Rite yesterday afternoon for observation.

Ivey's seizures have been under control for the past year. She has been in the process of a medication change, which can trigger seizures, and she has also gained weight, which can also trigger seizures. I pray that this is the explanation to her seizures. Hopefully we will get her medication levels high enough to control the seizures, but not to sedated her too much.

Watching her go through these terrible things is heart breaking. For all the things that we do to try and make her comfortable while she is seizing, there is nothing we can do to really help her. We hold her, love her and talk to her, but we can do nothing to physically stop them. Please pray that we get these under control again very soon. They make her feel bad and increasing her medications make her sleep more until her body adjusts to the new dosage.

Long story short, say a prayer for her. The end of this month holds big plans for Ivey and we need to knock down any obstacle(s)in her way. If all goes well, her trach may come out at the end of April.