Totally new plan
OK,
Dr. B just left here about an hour ago or so. We are changing
EVERYTHING - discontinuing the 2 IV antibiotics and the IV antifungal
and changing them to 2 different antibiotics and a different antifungal.
Instead of using bactroban on his skin, the wound clinic suggested
using silvadine instead. He's calling in a script for a new, sterile tube so we can start tomorrow.
We're also cutting back on his steroids by 50%. The steroids are such a
mixed bag - they are helping his lungs and helping him fight whatever
this illness is, but on the other hand they make it harder for the body
to heal itself. We'll just play it by ear and see if the reduction in
steroids has an adverse effect.
We'll probably end up with a courier
bringing the new meds sometime in the middle of the night tonight so
the plan is to continue everything we've been doing until the new meds
arrive.
We really need prayers for safety for Noah with the
med switch. One of the drugs is in the "-mycin" family and Noah has a
life-threatening allergy to vancomycin. The Infectious Disease doctor
said he's treated vanc-allergic children with this drug but Dr. B wants
us to heavily pre-medicate with IV benadryl to be safe. They tossed
around the idea of admitting him for the first few doses but there is a
lot of RSV in the hospital right now and he'd be safer at home. His
liver and kindney function are also a huge prayer request as all three
of these new IV drugs are ones he's never had before and we have no idea
how his little system is going to react.
This entire 5" x 6" patch of skin is incredibly raw and he's been having increased bleeding in addition to the serosanguinous fluid that is still leaking/oozing everywhere. He's soaking through the dressing so we need to change it at least twice a day - this is absolutely and literally agonizing for him despite extra doses of pain meds. Please pray for comfort and peace for him - he's at the point of getting very frightened if it even looks like I'm getting out supplies for a dressing change.
Thank you to everyone who has given or shared about the Ride to Give fundraiser. We are at 76% with just two days left - if everyone reading this shared on their Facebook and/or blog, I still think the goal could be reached in time. It doesn't take anyone giving a lot - just lots of people giving $2 or $5 or any other small amount. The link to the fundraiser is https://fundrazr.com/campaigns/9cn28/ab/61Edl0 and there are buttons that make it easy to share, tweet, email, or embed in a blog post. Just taking that couple of moments to share could make all of the difference and we appreciate everyone who has done so!!
+++ Dr. B just came by again before I could publish this - the meds are coming first thing in the AM (so glad I don't have to wait up all night) and we'll start them then. Turns out both IV antibiotics are related to ones he's allergic to, so we're going to need to be very, very careful and pre-medicate for both of them with extra IV benadryl. Please really do pray for protection from allergic reactions and protection for his liver/kidneys.
Blessings,
Kate
