This afternoon we met with the nurse practitioner of the neurosurgeon team to continue discussing the plan of chemotherapy that is to start in 4 short days. We went over many different items in our meeting consisting of who to call and when to call in the event of a fever or other complications. We discussed blood counts and what we need to watch out for with each (white, red and platelets). And also discussed who to call when we need more supplies (heparin, gloves, masks, blood draw vials, needles, syringes, NG tubes, etc.). Very overwhelming, but by the end of this all we should be chemo experts. The rest of the day was consumed with wheelchair rides and watching Despicable Me over and over and over. Delaney was very emotional today. She cried a lot. We are working with her to ask for what she wants rather than cry, but it is not easy as she is still suffering from the posterior fossa syndrome. PT was able to finally get a good visit in. Delaney sat up and played for a few minutes. The discharge nurse met with us and ordered a wheelchair to be delivered to the house. (No, this doesn't mean we will be going home anytime soon :-( ). We watched one of the PICU nurses change the dressing on Delaney's Broviac. This process is very sterile. You have to wear a mask, as does Delaney. Sterile gloves, sterile cleaner and then a tegaderm. Sounds easier than it is. Tomorrow we should start Broviac class (nurses bring a dummy in and we get to practice doing heparin locks, blood draws and proper Broviac cleaning). We should also start injection class. We will have to give Delaney an injection to help with her white blood cell production on a daily basis. Never wanted to be a nurse, but who knows after this! Delaney will get her stitches out tomorrow which means no food after midnight. Hopefully she won't wake up at 4am for her usually bowl or 2 of Cheerios. Thank you for all the love and support!
GO TEAM DELANEY!
Quote of the day
"This too, shall pass. When things are bad, remember: they won't always be this way. Take one day at a time. When things are good, remember: it won't always be this way. Enjoy every great moment."