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The first time my son underwent general anesthesia related to his Alagille syndrome (ALGS) is something that I will never forget. It was an experience I wasn’t looking forward to and it was not pleasant. 

Once Jackson was placed on the list for a liver transplant, he needed to have a magnetic resonance imaging (MRI) test to review several things so the doctors could be prepared for the surgery. They were looking at his brain to make sure there were no abnormalities related his ALGS that needed to be addressed, as he would be under general anesthesia for a long time during the transplant. He also needed an MRI of his abdomen for the main part of the surgery and to know what size liver they could accept.

Jackson was 2 years old at the time and I was worried about him going under anesthesia at such a young age. We met with the anesthesiologists, asked and answered many questions, and completed several evaluations, as well as received a long list of not-to-dos. It was always nerve-racking when Jackson had to have anesthesia, especially making sure we followed all the rules and kept extra close eyes on him to ensure he didn’t eat or drink during the timeframe he was supposed to be NPO. This is hard for all parents with children who have to have anesthesia; it’s a big responsibility.

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Our morning was going smoothly until our wait became longer and they pushed his MRI time back. We tried our best to keep him entertained and keep his mind off his bottle. The nursing staff was great and brought toys into the room to keep him happy. They were there to do whatever we needed.

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For some reason, instead of giving him some sort of “giggle juice” prior to taking him back for sedation, they just took him. The experience was horrible, and I’d never want to go through it again! They allowed me to walk back with him into a preprocedure room while they worked on him. Of course, he was terrified and crying. I kept trying to calm him down but was unsuccessful, especially while he was laying on a table in front of me with his arms strapped down.

They administered some type of sedative that put him to sleep. They said that after I left the room, they would put him entirely under anesthesia and place the breathing tube but they didn’t want to do that in front of me. However, as they sedated him and he fell asleep, his body continued to move and he continued to cry. It broke my heart and was very hard to see it happen. I asked them why he was crying if he was asleep, and they told me his body would eventually settle down. I left the room upset with this image burned in my brain forever.

After the MRI was completed, they brought Jackson to a recovery room. He did well waking up from the anesthesia other than being extremely angry. He was so angry at me that my husband had to take over and I had to leave the room so we could get him to calm down. Once he was able to calm down, we had him drink his bottle so that we could leave.

I knew he would have to undergo more anesthesia, and I didn’t want this experience to ruin all those future experiences for me. Because of this experience, I make sure to advocate for Jackson. I tell hospital staff what happened that first time. Now, every time he needs anesthesia, they always give him “giggle juice” first to make the experience so much better.