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December 5, 2012

Life is in the details... if I wrote about all of the details of our life your head would spin!  My head is spinning this week just thinking about all that needs to happen to get our girl on the road to better. We are a go for tomorrows surgery.  Lucy's fevers have come down since ramping up her antibiotic coverage last night, praise God for antibiotics!  During rounds this morning Dr. R told me that we would continue her on Vancomycin as he suspects that the bacteria that is causing her cholangitis is not being covered by just Cefepime.  This means that about half of our daily med schedule is now taken up with just infusing the Vanco.  Miss Lucy has a bad case of Red Man Syndrome which means that we need to pre-medicate her with IV benadryl and IV Tylenol thirty minutes prior to infusing the Vanco, then we run the Vanco infusion over two and a half hours.  All of this is in an effort to keep her airway from swelling shut and turning her into a tiny red tomato.  The risk is worth the benefit, however, as we run the risk of Lucy getting sepsis if we don't control the bacteria.  We have six points of access coming off of Lucy's central line, even with all of that we are running into issues, mainly compatibility issues with which meds can be run with her TPN and which meds are incompatible with her TPN.

Our day consisted of working out ALL of the details for tomorrows about a logistical nightmare.  I have faith that everyone will do their job well and have Lucy's best interests at heart.  We are going to be transporting Lucy to Thomas Jefferson Hospital in Philadelphia via ambulance.  I will be able to ride with her, along with the transport team, and one of the wonderful nurses from the floor.  Drew will follow us in our car.  This afternoon I spoke with the nurse who will be in charge of our girl once we arrive, she seemed like she had been well informed about our special girl.  She calmed my nerves a bit by telling me that they were looking forward to meeting Lucy and her wonderful family and that they take extra special care of their littlest patients since Jefferson is not a pediatric hospital they try and go above and beyond.  Lucy is scheduled in the OR at 8:30am.  I'm not sure how long the procedure will take, but Dr. R said that as soon as they could wake her up they were going to work at transporting her back "home".

Our wonderful night nurse has the massive job of getting all of Lucy's meds and supplies ready for tomorrow.  We are taking everything we need with us including packed red cells in the event that she needs them.

Many of the people who know and love our girl, who work along with us to give her the best life we can possibly give her, have come by to see Lucy and wish us well tomorrow.  It means so much to know that so many care!  We are nervous, the unknown is the worst part of this journey, but we have faith.  Thanks for your love and support, thoughts and prayers they mean so much.
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Helen A said...

Praying for you, worrying about you, sending hugs and kisses to you. Be the little fighter that you always are and get back soon. I am hoping you are soon more comfortable and back home where you belong!

hairburnerr said...

Praying for you today Lucy! You are one tough little girl! God Bless.
The Rechenberg Family