Trips to the hospital

Last Monday night I was watching TV with Brandy and noticed that Aven was crying and would stop for a few seconds and then start again. Odd, I thought, that she would do this because she hasn't ever done it before. I went to go pick her up and hold her. I noticed that she would go limp for the periods of silence and then regain control over her body after about 2 seconds. She did this two more times and after that Brandy and I put her in her car seat and Aven and mom took a ride to the hospital here in Greeley. In the ER however, they couldn't find anything wrong and sent her home after a few hours.

The next day around 9:30 am, Aven had a physical therapy appointment. He PT saw her doing it again and told Brandy. This time to better explain what was going on, Brandy recorded about 15 seconds of the episodes and then took her to the ER again. This time, with evidence in hand, she was able to show the Docs what Aven had been doing. They examined the video and decided that she needed to be taken to Children's hospital in Denver. I met them both down there and we were taken to an ER room.

Aven was seen by Neurology and the general peds docs. After about 6 hours we were moved into room 842 and we got all settled in. After about an hour in the room the EEG technician came in and hooked Aven up to the machine. The monitored her overnight and through the next morning until she had another episode. Once they were able to capture it on the machine they disconnected her from it. The Neurology docs decided that she has infantile spasms and that they are most common in children from 2 months to 1 year.

The next step was getting her on a medication called ACTH. This is a hormone that is supposed to stop the spasms and encourage normal brain activity. Her brain activity is more of a concern than the spasms at this point because if she develops with abnormal brain activity then she will develop abnormally. Brandy learned how to give Aven her medication, which is administered daily through an injection in the legs. They discharged her on Saturday afternoon and I went down to children's to pick them up.

We had a few small spasms over the weekend but on Monday night her heart rate was very inconsistent and dipped very low. Brandy took Aven to the ER in Greeley and stayed up with her all night. They decided to send Aven to Denver via flight for life so Brandy and I went down in my car and met our baby down there. They preformed an EKG on her heart and didn't see anything that they were concerned about. After talking to Neurology again we were discharged and now we're all back home.... living as normal as possible.