Today the few people who were aware of the situation going on all checked in on you. Everything was essentially, "the same". I went to work today. It would turn out to be the last day I would physically step into FBC for work in what now has been an entire year. I was perplexed over your rash and one of the para's at West Valley son's had a rash randomly also so I clung to the fact that maybe, just maybe, what you had was just some random virus. I played the "what if" we went to the hospital game in my mind. What if we went and at least received confirmation that it was not any of the viruses on the PCR swab. What if we went and they said there was a way they could help you. I kept this soundtrack to myself. I had to appear like a bull to aba because he was playing this game aloud as it was so I couldn't show that I was considering these thoughts or off to the hospital you would have gone.
Deep down, I knew. I knew you were not sick. I knew the interventions PCH would have done, would have been with your best interest as a doctor to do, but I also knew in your current state that would require interventions that crossed our hardline and there was no guarantee they would reverse what had already begun and then you would have died at PCH. We promised ourselves and you that you would never die in the hospital. No matter what he had to do, it was home or Ryan House, that was the final answer.
You looked worse today in terms of swelling. Your feed had now been off for close to 2 days. You were on Pedialyte, but we kept having to lower the rate or your lungs would fill with fluids. Aba was against lowering the rate, soI let him take over your pump. I couldn't keep having you choke. He would keep the rates as high as possible for as long as he could before you would show signs of coughing and or choking. I wanted it off, I couldn't bear you coughing, choking, and essentially suffering any more than you were. It was a horrible place to be. We were in touch with all of your doctors, we were receiving guidance, but we had not officially admitted you to hospice. They were there to listen to both aba and I give our perspective and wishes, but ultimately when aba was asked, he wasn't ready for "comfort care".
I wasn't ready to have your death sped up in a hospital. I knew the outcome. So for the first time in your life, I stood my ground solidly. It was not easy baby girl, but I knew I had to for you. I was done humoring everyone to prove what was happening. I didn't need to be told "you were right". I needed you to be as comfortable as possible, in your familiar settings, with your people, and no PCH restrictions of who could see you. I didn't need to humor anyone on your behalf anymore. So I dug my heels into the ground and held firm. It would get harder tomorrow. Tomorrow it would feel worse than the last few days had...who knew that it is essentially how every day onward would turn out to be.