Original Text of an E-mail from Douglas to Family/Friends
Alex had several respiratory/cardiac episodes during the evening, but they began to get farther apart during the later morning hours. The nursing staff has begun to tell us we need to sleep and that they’ll take her, but we can’t give her up. Kim was able to get a few hours of sleep Friday night and got 3-4 hours intermittently last night. I’ve gotten about an hour in the last few days, not really sure what my body is running on at this point. Alex had an episode that lasted about an hour this afternoon, she didn’t “shock” back quite the way she has been, which scares us a bit. Our on-call pediatrician was in the room and confirmed that she isn’t in pain, but we’ve ordered some morphine to take home in case she begins to be in pain as time progresses. She’s been very “normal baby” fussy this afternoon. 🙂
It appears we’re going to get to take her home. 🙂 She’s quiet right now and sleeping, we’re planning on leaving after dinner time. Early enough to let the boys see her, but late enough that we can get them to bed shortly thereafter.
We’ve asked our pediatrician to prescribe the use of an apnea monitor, which will track when she breaths and her heart rate and alert us to changes. The current pulsox monitor goes off often and uses “light” to measure levels. Because of this it can be “wrong” and alert when it shouldn’t (another reason we haven’t slept in days). The apnea monitor will use sticky sensors that measure her electrical impulses and won’t go off incorrectly (or so they believe). If it doesn’t work out we can get another pulsox monitor.
Hospice will be here between 3pm and 5pm to finalize the paperwork and go through everything we need prior to leaving. I was surprised an how much time they wanted to spend, but the nurses said they want to be sure to give enough time to go through everything. The nursing staff is also going to help us with handprints and other momentos during that time as well.
Thank you so much for your prayers and comments, they have helped us through these difficult days. We are so thankful we are going to be able to take her home.
Sorry, the comment form is closed at this time.