Alex has had quite a few visitors today. I appreciate everyone who has come to see her and also that every one has been respectful and kept their visits short. For the most part, Alex has stayed asleep through the day. She woke up a tiny bit when Cheryl and Heidi were here and I cried because of how she responded to them. She loves them so much and I’m so glad they were able to come love on her one more time. About 4pm she opened her eyes, got an awful grimace on her face and stiffened up. Drew and I felt some mild panic that she might fully wake up and be in pain that we could not control. I gave her the medications that were just about due and then held her. She relaxed and fell back asleep, but I went ahead and called the pediatrician. Drew and I had quickly decided that we did not want to find ourselves in a situation where Alex was in pain and we had no way to comfort her. Our pediatrician wrote the referral and called hospice for us. I called my friend Meg who works for Circle of Life and she made a few phone calls also to make absolute certain that we will be taken great care of. I’ve now spoken with hospice. The nurse and social worker will be here at 9am tomorrow. I asked what we should do if we had another pain issue before then and she told me to call the pediatrician back. I did and we now have a pain prescription waiting to be picked up… just in case we need it for Alex tonight. Drew and I feel confident that this is the right time to make the move to hospice. She will stay at home with us, we will have a nurse and social worker available to us and they will do everything possible to make sure that Alex is comfortable until the end. This will also make things easier when Alex passes. We will call the hospice number, the nurse will come and they will take care of everything from there.
Thank you all for your continued words of kindness via text, phone call, Facebook and blog comments. We feel very loved and supported and for that we are blessed.