Peyton is still on IV antibiotics. She has the midnight dose tonight, 8am and 4pm tomorrow and then one last midnight dose. So in about 28 hours from now, she will be finishing up her last dose of both IV meds. I'm excited but cautious. As I said, she's improving but she's not 100%. We're excited, but we have to remain a little cautious because she can backslide so quickly.
She sees the pulmonologist on Tuesday at 10:45am. This is great timing since it's just a few hours past what would have been an 8am dose of meds Tuesday (which won't happen since they end with the midnight doses that day). We'll see how she does. I have confidence at this point that we can do the Boston trip!!
Don't get me wrong, traveling with Peyton is going to be very far from easy. I've already started to write out a plan of exactly what medical supplies we will need to bring (I keep a schedule of the rotation of supplies, so I have to know what is being changed out and on what days while we'd be away). I'm also going through a mental checklist to see if I've left anything off the list. I'm sure I have. We have a Ford Edge. Not a huge vehicle (certainly not tiny, but not huge!) and we have to fit a wheelchair and all our stuff. We have to fit a wheelchair, an oxygen concentrator (bigger than a carry on bag but not as big as a full sized suitcase), 2 carry on size bags containing her smart vest equipment, her bipap machine, her nebulizer, a case or two of pediasure, her feeding pump, all her medical supplies that will need changed out (probably in a carry on bag), all her prescriptions, one of those electric cooler things that plug in to the car because she has meds that require refrigeration. All of that and more. And I haven't even gotten to her clothes yet. Or OURS (and Moira's)!! Maybe you need to pray that our Ford Edge turns into an Expedition before Saturday!!! It would be so awesome to have something BIGGER to drive up there with.
I believe that the gates of heaven have been stormed with prayers by countless individuals. I believe that it is only through the power of prayer that, right now, I can be saying that I have confidence that we can do this trip. I am nervous about traveling, but I trust in Him - He has gotten us to this point and He can take us further! Peyton is doing SO much better and very quickly. As for me, I'm still exhausted, but that feeling of being at the end of my rope and beyond my capability to continue caring for her at home is gone. Recall we were considering not that long ago the possibility of having her admitted because of her health and because of how I was feeling as well. Don't get me wrong...I'm far from feeling like this is a walk in the park. But I'm not at that breaking point right now.
Thank you all so much for praying for Peyton and our family! Keep the prayers coming. I will update with the outcome of the doctor appointment on Tuesday!
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