I just posted a prayer request on our "Sisterhood" (women's ministry) facebook page. Pardon the cut and paste:
"I need to ask for HUGE prayers for my daughter Peyton. If you know me/her, you know our story. If not, her CaringBridge page is www.caringbridge.org/visit/peytonfontenot. She's had pneumonia for a little over a month. After 2 regular "oral" antibiotics failed, they switched to IV antibiotics at home. She's got an indwelling port, so she is able to have IV antibiotics at home. The first round of those failed so they added a second IV med on top of the other one. She's still sick and basically tomorrow is the date where I have to talk to the doctor's office to give them the update so they can figure out what's next. She's already on 2 very strong IV meds so I'm honestly not sure what the "what's next" would be! To top it off, we are supposed to be heading up to Boston to go to the Children's Hospital for some very much needed second opinions. If she's on IV meds, we can't go. If she comes off antibiotics altogether, at this point it's safe to say it won't be long til she's really sick again. "Oral" meds aren't going to cut it. So basically we need a miracle - a huge "sun stand still" prayer so that we can make this trip. As it looks right now, the chances of us making the trip seem to be getting smaller and smaller by the day. As it is, we are very afraid of what a trip like this could do to her. I would ask that you join me in praying for her healing and for guidance for us. I know it's all in the Lord's hands and I know He can heal her and give us the strength we need to get through this. Thanks ladies!"
That's essentially where we are at right now. It's not a good place to be in. She needs to be healthy, first and foremost. The Boston trip ideally needs to happen. I know her PT here and her school providers are basically waiting to hear how the Boston trip goes so they can figure out how to best meet her needs here. If we don't go, then I'm not sure what that means for Peyton here. I'd love to know if there was a way we could send documents up to Boston and have an appointment via skype or something.
After over two weeks of Peyton needing round the clock care, including administration of IV meds through the night, I am worn out. I'm worn out from the stress of a horrible nursing situation. If we have one more nurse leave.... Peyton's hours were temporarily increased to 84 hours a week for the past couple weeks (up from 56), but before you get too excited, she lost 20.5 hours last week because of poor ability to staff our case. The nursing situation has been beyond stressful for me. Peyton's health alone has been very stressful for us. I am sure that on some level there is a correlation between her health and the insufficient home nursing support we are getting, although her health is poor in general.
I just ask for lots of prayers for her and for us. I am personally tapped out. I'm beyond exhausted. I'm getting only a couple hours of sleep a night - and that's not always a couple consecutive hours. I have to be "on" 24 / 7 and I'm so beyond "done" right now. I need prayers for strength right now. The last thing we need is for me to suffer some sort of health issue because of this!!
Thank you all for your support. I've had a great many people helping us out via play dates for Moira and bringing meals to our family and you have no idea how much this has meant to us. Thank you so much!