A Good Morning…

We are waking to a baby who has her eyes open, laying in her crib, looking very comfortable and at peace.  She is SO MUCH more aware this morning than I have seen her in over a week!!  Sometime during the night her nasal cannula came untapped from her cheek, we watched as her O2 sats stayed in the mid nineties and decided to leave it off.  She has been breathing on her own ever since.

Last night we continued having a difficult time controlling Lucy’s pain, the PICU attending came in and assessed Lucy’s pain at the start of his shift, then about an hour later all h**l broke loose as she was in so much pain that she wanted to crawl out of her own body.  Dr. S came back and agreed that she needed to go up on her dosing, he increased her dosing by 30% and moved up her PRN(per requested need) dosing to every two hours vs. every four.   I think that we finally have her pain under control, which is good since she is maxed out on her dosing for dialaudid.  That’s not to say she has not had a few break through moments, but it is SO MUCH BETTER than it has been!!!  We also believe that she has a paradoxical reaction to the drug Nubian, we are discontinuing that med for her.

Lucy’s labs are looking better in some areas and not in others.  Her liver numbers are still elevated but are improving.  Her triglycerides are in the hundreds not thousands, huge improvement.  Today we were actually able to get all of her lab values, unlike the past week.  Her blood counts are dropping, she will be getting a platelet transfusion sometime this morning as her counts took a big hit overnight., followed by a round of Lasix.   Her albumin, the amount of protein in her blood, dropped again so she will be receiving an infusion of albumin as well.  Giving her extra protein should help to draw off some of the excess fluid that she has all over her body as well.