It all began yesterday, but I was too afraid to write about it for fear that I would jinx it. I do believe that we have begun to turn that infamous corner :). Lucy's lipase is in the hundreds, not eight thousand! After receiving a blood transfusion on Monday her hemoglobin is WNL - within normal limits and her white cell count is below normal limits, that's her norm. We turned off her PCA of dilaudid yesterday and went back to PRN doses, she only required three PRN's yesterday. We are leaving her fentanyl patch alone for now. Yesterday she was sporting that post transfusion glow that we so look forward to after giving her blood, today she still has a bit of the glow remaining in her cheeks. Even better than all of this, Lucy has some of her spunk back!!!
This morning during rounds she wanted to participate, so everyone piled into Lucy's room. She allowed Dr. R to lower the right side crib rail, this is usually a big NO NO in Lucy's world. She has learned from her countless hospital admissions that doctors examine patients on the right side of the bed, as a result of this Lucy has a strict rule that the right crib rail must stay up! If you have any hope of examining Lucy you'd better follow the rules. Exceptions are only made to those she loves and believes will not hurt her. Lucy and Dr. R have what I would describe as a love/hate relationship, she loves him but hates when he has to do stuff to her and vice versa. Last week Dr. R was getting on me to moisturize Lucy's feet, she was clearly not in the mood to have this done. Although she needed this to be done because her skin has cracked from all of the edema, I was choosing my battles carefully. I had to replace Lucy's Foley catheter and give her an injection of Risperdal, moisturizing her piggy toes was at the bottom of the priority list. I told him if he wanted it done to do it himself...so he did. He took half of a jar of Aquaphor and literally coated her feet with it, and then proceeded to complain to me that he could not wash it off. Seriously, I should know better than to allow him to do stuff to her :). Back to this morning, after allowing him to lower the crib railing she then asked him to put lotion on her feet. He practically fell to the ground and then told the resident to, "order a head CT stat, something is wrong with Lucy she is being cooperative".
This morning during rounds she wanted to participate, so everyone piled into Lucy's room. She allowed Dr. R to lower the right side crib rail, this is usually a big NO NO in Lucy's world. She has learned from her countless hospital admissions that doctors examine patients on the right side of the bed, as a result of this Lucy has a strict rule that the right crib rail must stay up! If you have any hope of examining Lucy you'd better follow the rules. Exceptions are only made to those she loves and believes will not hurt her. Lucy and Dr. R have what I would describe as a love/hate relationship, she loves him but hates when he has to do stuff to her and vice versa. Last week Dr. R was getting on me to moisturize Lucy's feet, she was clearly not in the mood to have this done. Although she needed this to be done because her skin has cracked from all of the edema, I was choosing my battles carefully. I had to replace Lucy's Foley catheter and give her an injection of Risperdal, moisturizing her piggy toes was at the bottom of the priority list. I told him if he wanted it done to do it himself...so he did. He took half of a jar of Aquaphor and literally coated her feet with it, and then proceeded to complain to me that he could not wash it off. Seriously, I should know better than to allow him to do stuff to her :). Back to this morning, after allowing him to lower the crib railing she then asked him to put lotion on her feet. He practically fell to the ground and then told the resident to, "order a head CT stat, something is wrong with Lucy she is being cooperative".
Getting better is exhausting!
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Get better soon Lucy. We are all cheering and praying for you to get better and come home for the holidays. You are always in our minds at Coram.
I love these little glimpses into Lucy, and into your reality right now. Thanks for taking the time to share. Dr. R. seems like a one of a kind Doc! Praising God with you that things seem to be looking up a bit, and continuing to pray that the things that are causing her pain and discomfort are resolved as quickly as possible. Praying for you, too. Hospital stays have to be such a mixture of frustration, exhaustion, worry, boredom, etc. I can't even begin to imagine. May His strength be your reality today, Nicole!
:) Glad she's starting to get better. Eithene hated people to touch her most of the time....she tolerated (sort of) the required stethoscope and abdominal exams, but certainly did NOT want any "extra" touching like on her feet by the unapproved, even though she too needed daily lotions applied to help with the effects of serious edema. Doctors were not on the "approved list", so I can imagine a similar scene with Lucy pretty well :) I hope she keeps improving!
Spunky Lucy is a good thing. Keep it up Lucy!
Love
Helen
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