Sophia is still in bed; she has not woken up today. As her mommy, this makes me sad and scared and worried but I also know that her resting is better than being awake uncomfortable. So, I let her rest and I continue to feed her and give her medications. But I wont tell you that its easy not seeing her pretty eyes today. Hospice was very nice today; they came out this afternoon and enrolled her in the program. Sophia will have the same hospice nurse that she had during her last enrollment in the program. Her hospice nurse, Katherine, said that she can see a decline in Sophia from the last time she saw her several months ago. After listening to Sophia and watching her, the hospice team agreed that her lower lobes of her lungs are doing very little or nothing at all, and while she has good air movement coming in, very little is going out. This means that she is building carbon dioxide. They also noted that she is working very, very hard to breathe and that her lungs are slowing down and her accessory muscles, like her stomach, are starting to work harder trying to hep her breathe. Eventually, her little body will just tire out but they were unable to say when that may be. They said that after more visits and more time with Sophia, they may be able to tell us more. After our visit, her hospice nurse called me and said the hospice doctor wants to come and see Sophia. This was a surprise to me and Jacob and I can only imagine that its because she may be more declined that they had realized when accepting her into the program. We are hoping that the hospice doctor will feel more comfortable giving us more specific information and will answer some of our questions. The bottom line is that Sophia doesnt have a lot of time left. May it be days, weeks, months, we have to spend as much time with her because we cannot predict the future and we dont know when she will be called home. But she will know that she is loved fiercely by her mommy and daddy. We have never left her side, never stopped fighting for her. WE have pushed and pulled and kicked and screamed, cursed and demanded. We probably look like crazy people sometimes and I know some medical staff probably want to run the other way when they see us coming. As one of Sophias nurses says when I tell her I called the doctor with a question, of course you did. :) We ask the tough questions and we expect answers. We want to know what is facing us and Sophia so we can prepare the best final days for her. She will go in peace, I have no doubt. We will make that happen for her because when Sophia goes, she takes our hearts with her.
Posted on: Thu, 31 Jul 2014 21:36:34 +0000
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