Mondays

LONG Version(above) SHORTER version (below) - videos taken from YouTube/ I have no rights, but simply sharing for educational purposes.

Thank goodness I ran into Amy Lutzs writings before my son was admitted to an inpatient facility across the country. Had she not been brave enough to share her story about her child that sounded pretty darn similar to mine...I would have had no hope. Meds and behavior modification was not reducing a constant need for G to hit his own face. I admitted him knowing my hope for this treatment was going to be possible to try and hopefully change his life.

I was lucky my neighbor is on the same path with her son. She had explored this treatment for her son. I read everything I could. I watched YouTube videos like these (above). I started telling my parents, my husband, friends...hold on to hope. There is another tool.

I was afraid to share here and on social media that we were going to follow in the same steps and try an option that is frowned upon by many.

I discovered that my tribe/circle has not been critical. I don't know if it's because many people have observed his behavior or have read these posts, but other than 1 person (who I hardly knew) told me I was wrong; everyone has been immensely supportive and kind to us.

I have lost count of how many treatments G is now at. He started and stopped. He's had treatment out in Hopkins. He's continuing his treatment in Mpls.

Fast forward to today. Now Dad and I get up at the crack of dawn every Monday. We make Grant get in the car with no food in his tummy and we head downtown. We have gotten to know everyone from the valet to the nurses and drs because dad and I have been on this routine since May.

Once inside, Grant lays down in a hospital bed. He's not asked to change like others (into a gown). They remove his bandage with the emla cream and utilize his port to assist in sedation. People do not get ECT without sedation. We quickly connect with a variety of professionals and eventually I suit up and go down the surgery area with him behind me in a bed on wheels.

Each Monday I watch them put him to sleep. I stay by his side until he dozes off. I take his personal items and do not stay to see the treatment. I would if they would let me. I know they put electrodes on him, I can see the equipment. He has to have peds anesthesiologists and an adult ECT dr. There is much coordination going on for my son to make this possible since he is under 18. Sometimes there are students and it can be quite full in the room. It's weird we are in the surgery area, but that is what they are requiring (it was not like this out East).

His treatment lasts about 15-25 seconds. I would say we wait between 5-10 mins for him to get wheeled back to us (in a bed). Sometimes he has oxygen, but most of the time he doesn't. He's typically pretty sleepy though we have seen him quite alert. He can cough. We are waiting to see if he wakes up and how his vitals are. Once he is cleared, we wheel chair him to the front. I pay for parking and we come home.

He sleeps on and off for the rest of the day. Typically there is a period of awake, but he doesn't do anything. He doesn't go to school because I don't think he feels well. Many Mondays he has no appetite, but that ebbs and flows. He will most likely eat one meal and I keep him hydrated while he sleeps with his g-tube.

It is a weird day "off". Loads of sleeping or just lying around. There have been some scary Mondays if he was sick and I didn't know it or other complications. I keep work to a bare minimum.. If someone wants to see houses, I wait until there is an adult around to help me by taking over watching him. I have to be with him closely. He's just had a seizure and I don't take this lightly. He can be quite self injurious when he finds himself alone, so it's better to just grab an iPad and hunker down next to him to keep him safe.

If you are a parent considering ECT, I am happy to try to answer questions or share our experiences, but I don't pretend to be an expert on this topic nor is it the answer to Grant's tics. I continue to research other options. He continues to hit himself very hard and often. I believe there is another answer. I will keep looking for everyone's sanity.