Home has become a hospital. The mini-fridge a pharmacy and the living room a supply room. Mommy has become nurse and everyone else in the house has become nursing assistant. We are settling into our new routine with all the meds and equipment. Margos still on tube feeding (we have a machine for that), she needs oxygen 24 hrs a day (tanks and concentrator for that), she has had a constant drip of pain meds for months so we have a machine for that, we have a separate pump for when we give her fluids infusing over night, we measure her blood pressure, temperature and oxygen. Between the IV infusions and oral meds that she needs throughout the day, they total 29 doses per day!! Its kept us on our toes, thats for sure! We do have a nurse visit daily to check her blood counts, help us evaluate her pain and answer questions. When she needs a transfusion we have to load her up and all her equipment and go to our Kids Cancer Center. Margo needed a platelet transfusion on Saturday, so we have already gotten a chance to test THAT circus! Unfortunately, Christmas Day seems to have been an anomaly... Margo has been pretty miserable the last few days. She had 103 fever on Saturday and slept nearly all day since. We have increased her pain med dose in the past week several times trying to get her comfortable: from 4 to 5 to 6 to 12 to 30 and now to 40mg per hour. We are getting there... She is feeling a little better and awake watching Doc McStuffins this morning. Her amazing spirit shines through all the time! She seemed to be asleep and then wake to ask someone to take her toys upstairs and put them away for her. She has her purse with her at all times... Even while she sleeps. When I lean over her she will reach up to tuck my necklaces into my shirt, and this morning I was helping her sit up while wishing her, she tried to get the sleep curtsies out of my eye for me. She is always using her manners... Saying no thank you when we ask her if she wants to eat or if she wants to move to a new position. So although we ARE giving her steroids, chemotherapy and antibiotics, it is still not sinking in that this treatment is not going to cure her. Thank you for your continued prayer and love for Princess Margo!
Posted on: Tue, 30 Dec 2014 16:33:55 +0000
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