Our weekend actually went by faster than I thought it would. Medically, Lucy did just what Dr. R ordered…to behave! Her cultures have all been negative, which means that our fear of reinfection is no longer, and her new line can be placed. We are scheduled for surgery tomorrow afternoon with Dr. K again. Afterwards we are hoping to pack up and go home! I spoke with our home infusion company on Friday and gave them a heads up that Lucy has a few new meds that she will be coming home on, one of the more difficult meds to find will be her IV Tylenol. This is a relatively new med to become available in IV form, and I for one am thrilled that this med is available for our girl! Our options for pain and fever relief are minimal as all of Lucy’s meds need to come in either IV or transdermal from. Our infusion pharmacist has never had an order for IV Tylenol or even knew that Tylenol came in IV form, but told me if DuPont has it then she should be able to get it.
On Saturday the kids came to the hospital to help celebrate a birthday for a Wyatt’s sister…unfortunately, we know all too well how being in the hospital can interfere with family/holiday plans. Our family, combined with Wyatt’s family, and the third mito musketeers family made for one big party. Three mito kids and all of their pumps, wheelchairs, tubes, and medical needs at one birthday party was a nurses nightmare, but all went well.
Today was a cold and gloomy day, Lucy and I took lots of walks around the hospital to pass the time. Our friend Cherie came to see us and gave Lucy a mani/pedi. Lucy chose to paint her toes purple…I wonder what the OR staff is going to think about that tomorrow.
Please say a prayer that tomorrow goes as smoothly as possible as we are looking forward to going home!