Ugh…fevers, pain, discomfort that pretty much sums it up. Lucy’s fevers are fierce and persistent, sadly there isn’t anything we have given her that helps to reduce her fevers. IV Toradol reeked havoc on her system, causing her to bleed out of too many places. Tylenol has done nothing to bring her fevers down, and because of this and the fact that we have to administer her Tylenol via a rectal suppository, we have decided to stop giving it to her. Lucy’s GI system is completely shut down, both her g and her j are open and draining to gravity,therefore we can not administer any meds via her g or her j ports. Clamping either tube even for a few seconds induces retching which is painful in and of itself, but add a 104 plus fever and body aches and that is just cruel. We are using morphine to control her pain, we have increased her dosing three times and I am going to push for another increase as her heart rates are in the 190’s consistently. We are using cool wash clothes on her body to cool her down, but she is hypersensitive and doing this irritates her and makes her uncomfortable. She will, however, keep a cool cloth across her forehead.
Yesterday Dr. R ordered a series of lab work to check her metabolic function, specifically her lactate level. Unfortunately, we were unable to get any readings on any of her labs both times we drew blood off her line because there were lipids detected in both samples. We did not attempt a third time yesterday as Lucy is already struggling with her blood counts, we will try again this morning. Dr. R is toying with the idea of trying a med on Lucy that is typically given post anesthesia to treat patients who suffer with malignant hyperthermia. The med is called dantrolone, Dr. R is really not sure if it will work to reduce Lucy’s fevers but he thinks it worth a shot. Really it is a way out of the box idea, but with Lucy you need to have someone thinking way out of the box about her.
Praying for some improvement today!
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We continue to hold all of you in prayer. Peace to Lucy!
Love,
Cory, Lizzie, Charlotte, & Cara from music
Nicole we are praying for you guys and our dear friend Lucy!
Poor little Lucy. Praying for all of you.... I don't know what else to say, but just wanted to let you know we are here, and we are praying.
- Susan, for all the Darts
I was hoping to see a change for the better for little Lucy :( sorry shes still struggling. Just sending more hugs and prayers that she makes a turn around asap! Also congrats on her MAW trip, you all deserve this.
Heidi & Jack
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