Lucy has her days and nights confused…some believe that this is a result of our stay down in the PICU. Perhaps, but I feel that it goes hand in hand with her dysautonomia. Anytime you mess with Lucy’s “schedule” you deal with the consequences!
Lucy is waking for the day at around 4:30 am. She stays awake until around 2:00pm, this is a very long wake period for her. When she finally falls asleep she sleeps until sometime between 8 and 9 pm. She would probably sleep longer, but we are waking her to change out her TPN and start three hours of continuous med infusions at that time. She falls back to sleep between 11 pm and 12 am, and wakes for the day again 4:30 am. Lucy’s body obviously needs sleep when she can get it, so we are trying our best not to disturb her. When we get home we’ll have to work on this schedule.
Dr. R came in this morning to discuss some things… I told him that I needed to get in touch with Make-A-Wish today to let them know if we are a go for Sunday, his answer, “I’m going to say yes, until I say no.” I think that is as good an answer as I am going to get at the moment. Lucy is doing well with her “rehab”, we are being more aggressive with the weaning process because we are on sort-of-a time line, and also because she appears to be handling the changes. She is a little more irritable today and jumpy, all related to the withdrawal process. The clonidine patch is helping with the weaning process and at the same time contributing to her sleeping issues. Clonidine is often used to help with sleep, because Lucy is on the Clonidine patch it is affecting her at all hours of the day not just the night. Weaning Lucy off of her pain meds is just one of the things we have to accomplish before going home/to Disney, we need to address the issue of her hypertension, and her bladder. Dr. R put in for a consult with nephrology and urology today. Lasix is helping to draw fluid from Lucy’s body, but the fluid just comes back after several hours which leads Dr. R to think that Lucy’s kidneys are not functioning correctly, that and her labs are indicating this as well. I have been waiting all day to meet with the nephrologist, at this point it is more likely that we will meet tomorrow.
Urology stopped by this afternoon and we discussed Lucy’s bladder issues. At some point in the near future we are going to have to put Lucy through a urodynamics study to assess the function of her bladder. In the meantime we talked about straight cathing Lucy every three hours to help her empty her bladder completely…ugh. For now I am a fan of the Foley, it can stay in for thirty days, but comes with a risk of infection. Lucy is immobile at the moment so having another tube with a bag attached to the end of it is really not inhibiting her and it prevents having to be cathed every three hours. Just some things…