Work is not something I usually take home with me. I am kept reasonably busy, but my job is one that I can generally not worry about when I am not there and I can usually take things in stride. The last couple of weeks were different though. For some reason I was really, really stressed out. It was really busy, and there were lots of unusual circumstances, things that were particularly demanding of me.
One particular patient that really affected me, more than I am typically affected, is one of my ketogenic diet patients, A.U. (I wrote about this diet here). I think it affected me so much because I know this family more than I know the typical patient on the unit. She is a 17 year old who I just got to know this fall when she started the diet. She is a very sweet girl with a lovely family. The diet hasn't helped her, at least not much yet. she was already having increased seizure activity when she was started on the diet, and then was hospitalized a few times in the weeks following. Almost 3 weeks ago now, she was hospitalized again after having hours and hours of seizures that couldn't be stopped with any medications they had at home. By the time they got them somewhat under control at the hospital with huge amounts of drugs, she had been seizing almost constantly for about 24 hours. The brain takes a hit every time something like this happens, so it is not good! The crazy thing is that another girl was admitted with the same thing on the same night. This is not something we get everyday at our hospital. Both of these girls were put into a pentobarb coma to stop the seizures and therefore were intubated. The younger one, B, ended up dying after 10 days. She was already physically and mentally compromised before and was unable to wean off the vent, and her parents came to the decision that further interventions were probably not going to benefit her and only hurt her at that point, so they decided to remove support. Very sad. This was difficult news for AU's family to hear, as they were worried that AU might not make it through either. However, she was out of the coma, not intubated anymore, and was having better seizure control. She wasn't really able to communicate yet, but at least she was showing signs of improvement. At this point she has been moved out of the ICU to the regular pediatric floor. AU has lost her ability to eat on her own and is being completely tubefed with a formula for the ketogenic diet. We know that it is going to be a while until she may be able to eat on her own again. The good news is she is starting to communicate and show her sense of humor again. I spent some time with her and her mom a few days this past week. One day she was holding my hand and squeezing it really hard and smiling. She thought it was funny! She really made my day. Although she is not back to her baseline, she is making progress. She was trying to tell me something, but couldn't say what she wanted to say. Her speech is still very slurred and she can't always get out the words she wants to say. It's hard to know how much of that is brain damage, and how much of it is from the huge doses of anti-seizure medications she is still on. Her seizure activity hasn't gone away completely. But when I left her room that day, she was able to say "nice to see you". I was so happy! The next two days she was much sleepier and I didn't get to talk to her. I am looking forward to seeing her again on Monday to see if any improvements have happened over the weekend.
As far as my other ketogenic diet patients go, we have actually had a lot of success with other kids who are on the diet. It's really exciting to see those kids doing so well, and it makes all the hard work worth it!
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