Most people who know me well know that I am a sensitive person, at times to a fault. I allowed myself a few tears for Cody and his family then looked at Georgia, I thought to myself, suck it up - we have clinic today.
This process has hardened me, I want to grieve for these families but what I do instead is allow a moment or two of sadness, send them love and strength then I have to move on. I have to stay focused on my child and overcoming the challenges that lie in front of our family - this is a very odd place for me.
Georgia's clinic appointment went well, not only did we get to see our friends Hunter and Mia, Georgia's labs looked great after finishing our first steroid taper and her weight was up! After talking with the dietitian and doctor it was decided that we'd pull back 25% on her NG feeds to hopefully stimulate more of an appetite and we would begin a taper of the second steroid.
By bedtime both Georgia and I were exhausted and looking forward to daddy coming home the next day. I laid down with Georgia and thought she was asleep only to have her suddenly start crying.. I turned on the light, she'd pulled part of her NG tube out.. I stopped the pump, was holding her arms down with one hand as she was screaming trying to gently push the tube back down with the other hand.. it didn't work. Georgia was so upset and flailing that she managed to push my hand away and in turn pulled the rest of the tube out - damn. As I tried to console a very upset little girl I could only think of one thing - this time she won't be sedated when it goes in.
The next day I called the clinic to let them know what had happened, they said to come in at 3pm to have it replaced. I asked if she could have something to relax her, to perhaps make the process less traumatic - the quick and curt answer was no, we don't do that. I said, I understand that isn't typically what you do but she was hysterical when it came out so I can only imagine how things will go putting it back in.. more push back, then finally I was told the nurse would talk with our doctor. I knew Georgia couldn't be sedated but thought they would certainly give her something if I was adamant about it - there is almost never push back when you're inpatient why is this so different? We arrived and as soon as the nurse called our name to come back she said Georgia would not be getting anything.. this lead to a conversation that had me saying things like "what difference does it make to you" and "I understand that you do this daily, Georgia doesn't".. we went round and round until I thought I might literally explode. Instead, I took a deep breath and asked the nurse to walk me through how this was going to go. I get it, replacing an NG tube isn't a big deal in the world of curing cancer, but in the world of Georgia it is a traumatic event which she doesn't understand. I think the people working in this world are good at what they do but become highly desensitized to how big the little things can be. The NG replacement happened, I held her, she was scared and upset and we hope that we will never have to do that again.
With a lousy couple of days behind us Brian and I took Georgia to enjoy some time at the park.
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