We returned home from the land where dreams come true late Saturday night, actually it was more like very early Sunday morning. We had a fabulous time and are so grateful that we had the opportunity to go on this trip of a a life time! We have so many wonderful memories that continue to be talked about over and over by every one of us. This was our hope, what we wanted most of all…lasting memories!
Our trip home was not without stress, our flight was delayed due to mother nature. Lucy’s last TPN bag had enough fluid to last us until at best 11:00pm. When our original flight did not take off at 5:00pm Drew and I started the silent panic, you know the looks that are shared between husbands and wives that if spoken would say something like holy s**t! If we had another TPN bag with us we would have changed her out but due to the craziness of our life and all of the extenuating circumstances surrounding everything about this trip, we just had enough TPN shipped to us for the time that we were in Florida. A new shipment of TPN was waiting for us at home. When at 7:30 we were still delayed I was beginning to panic, Drew and I thought about our options and came up with the idea of cutting Lucy’s infusion rate in half in an effort to stretch the bag. We called our infusion company and spoke with the on call pharmacist about our predicament and what we wanted to do. Our biggest issue was hypoglycemia, Drew and I knew that if she ran out of fluid that her glucose would plummet into the 20’s or 30’s quickly, so our hope was to keep her running at a rate where we kept her glucose above 50. The pharmacist on call was not the pharmacist that we work with usually, but it didn’t really matter as everyone at our infusion company knows Lucy, her issues keep everyone there employed. Due to our extenuating circumstances she nervously agreed to our plan and helped me to reprogram Lucy’s TPN pump. This change was what saved us. Our flight finally left Orlando at 8:30 pm, and when we arrived home at 12:30am Lucy had just minutes left on her pump. This was all way too close for comfort, but we made it…just barely, but we made it! On Monday morning our usual pharmacist called and applauded us for our idea, though it was not something they have ever done before, it worked.
There has been a whirlwind of events around here since coming home that are keeping us on our toes. Jack brought back a souvenir from Florida, which warranted a trip to our ped’s office first thing Monday morning. He has a staff infection on his face and back of his left leg that is classic yet not commonly seen…oh yes, leave it to us to have something so unusual. A script for antibiotic ointment and instructions on Lysoling our home were given and we were on our way. Lucy had an appointment with Dr. R and the lab on Monday as well. She too brought back a souvenir from Florida, a urinary tract infection. We started her on IV antibiotics in hopes of getting rid of the infection before next Wednesday when she is scheduled for her urodynamics study and VCUG. Sophie also had a little souvenir that we brought back from Florida just in case, she had a tick bite in her head. According to Helen our nurse, it had to have been there for some time as it was pretty big. The good news is that it is not a dear tick, the kind of tick that carry Lyme's disease, it is a wood tick the kind that literally fall out of the trees this time of year in our neck of the woods. Thankfully there is nothing really exciting to report on when it comes to Megan.
I am trying to settle back into “normal life”…if that’s even possible. Tuesday and today are the first two days in a row that I have spent at home in over a month! I have so much catching up to do I don’t even know where to start…I seem to be doing a little here and a little there with no real progress in any area. Lucy’s med schedule, medical needs, and dramatic behavioral changes are overwhelming! We have had some promising leads on qualified nursing which I am hopeful will be an answer to our prayers, but at the same time it is another new change that we will all need to adjust to.
I will post a medical update soon as there is too much to write about tonight. I am also working on putting our pictures together from our trip, hopefully I will be able to post those soon.