Difficulties with Sedation

It has been ten days since I've been able to hold Lynnea, and although everyday that I have to go without holding her is difficult, today was especially hard because, after taking Lynnea off from her paralytic drugs yesterday, it has been very difficult to keep her sedated today (and this is where I should insert a giant "I told you so" to all of the doctors that thought it was a good idea to take her off from her paralytics so soon...). Since she's not really sedated, now she can look at me with her pleading eyes, and I can watch her silently cry as she kicks her feet and flails her arms, which only causes her chest to hurt more, and she doesn't understand why I can't pick her up, or why I can't make her stop hurting. She is now on Fentanyl, Versed, Morphine, Ativan, and Precedex for pain control/sedation, and she still manages to completely wake up (again with the "I told you so"). For what it's worth, Dr. St. Louis is back from vacation and he did take me very seriously when I told him this morning that this would happen and we really should consider increasing her sedation today (she was only on Fentanyl and Versed this morning). Unfortunately, the extra sedatives have come just a little too late in the game to be particularly useful.

On a slightly more positive note, they did begin weaning her off from the ventilator today. Her Nitric Oxide is now turned down to 2%, and should be completely off by morning. Her ventilator rate (the number of breaths the machine takes for Lynnea) has been turned down from 36 to 28, and so far she seems to be doing OK. She is still on 45% oxygen; the plan is to begin turning that down after she is off from the Nitric Oxide.

She continued to run a fever most of the day. The highest temperature I noticed was 102.2. She is down to 99.6 now, and I hope she stays there, at least overnight. Also, they decided to very slowly re-start her tube feedings so that they can eventually take her off from the IV nutrition that she's on. Right now she's only getting 2 mL's per hour of Pediasure, but it's a start.