We checked into the Clinic again on Monday morning, 3/21. Gabby (we love you!) rearranged her schedule so that she could be the one to wire Will up for the Video EEG. Next, Will had to have an EKG to test if his heart would tolerate the ACTH. He cried too much during the first one so they ended up having to repeat it a second time. We practiced giving shots on a teddy bear, and then we got to practice giving each other a shot of saline solution in the arm so we could both know what it feels like to be on the giving end and on the receiving end. Not so bad. Actually, spend a few days in a tiny hospital room with your spouse and an active 20 month old who is wired to the wall...jabbing your spouse in the arm doesn't seem like a bad idea! Just kidding...
By evening we were all going stir crazy, so we
Kelly gave the shot on Wednesday 3/23, and all went well. We were told we could go home a day early, so we started packing up, and they removed Will's EEG leads. Of course, Dan was out taking the first load of things to the car when our nurse practitioner came into our room to let us know that they had found an "abnormality" on the EKG, and Will would need to have an Echocardiogram, which is an ultrasound of his heart, to find out more. He was to be sedated, but miraculously, he fell asleep right before it was to be done, and somehow stayed asleep the entire time so there was no need for sedation. Luckily, about an hour and a lot of prayers later the results came back that his heart is completely normal, which was a huge relief. We're not sure we could handle having to worry about two major organs, worrying about his little brain is enough.
We finally got discharged and made it home around 7:00 tonight (Weds. 3/23), and Will was really happy to be back home to see Jack and Duke. Jack learned some new jokes while we were gone from his grandparents, and couldn't want to tell them to us. Tomorrow we have a home health aide who will come to our house to check Will's blood pressure, and she will be coming every 2 days for the duration of this treatment. So far, we aren't seeing any results from the ACTH, just side effects. In fact, if anything, he seems to be having more seizures and they seem to be getting more intense, but we were told that although sometimes results are seen fairly quickly, it could take up to 2 weeks to know if it is going to work.