PJ Update

Warning: this post contains some negativity.

Reagan and I have been trying to maintain a positive outlook regarding Piper’s new home. Of course it is always going to be an adjustment, going to a new place. There is new staff to meet, new procedure, idiosyncrasies etc.. It has been about a month now, and Piper has not made any progress. In fact, she is honestly not doing so hot. She has still not been able to overcome whatever it is that caused her to have a fever and coughing. In fact, by my observations yesterday, she is much worse. I’m going to give the benefit of the doubt and assume that this is the reason that her vent settings have not changed at all (still much higher than when she left Blythedale) since she has arrived, and the reason that we have still heard no mention of a trache collar schedule. I won’t go into detail with the other disheartening details that I observed, but I will say that I get a general sense of neglect when attempting to assess Piper’s situation.

Piper is not her normal self at all. She barely wakes up, at all when we are there. When she is awake, she is not interested playing, sitting up or standing. Reagan and I both had extended conversations with Piper’s social worker and nurse practitioner, today. They were good at listening, but we didn’t really feel satisfied with the explanations that they were giving for Piper’s dramatic shift in constitution. Reagan and I will be meeting with Piper’s doctor on Thursday, hopefully we will come away from that meeting hopeful.

The only thing worse than witnessing all of this, is the general feeling of helplessness to do anything about it. The situation is deeply troubling for me, but feel like it is even more so for Reagan. She has a tough time thinking about anything else. I have put off posting about Piper for a bit, hoping that I would have some good news to include. Unfortunately, things aren’t going so hot right now. So I guess I’m are hoping that those who share our joy in watching her grow and progress, might also find it appropriate to join with us in throwing up an extra prayer or two, this week, in Piper’s behalf.