Thank you all for all of your prayers. We got home this afternoon. Has it really been NINE DAYS?????
For the sake of my daughter's privacy, I don't feel comfortable being very specific about her diagnosis or treatment here on the blog. We ruled out any medical (germs, poisons, toxins, damage) cause for what was going on, and then started experimenting with meds, and yesterday finally found a combination that works, after trying two other different things that did not work. So, we are grateful.
I can say nothing but good about the doctors, residents, nursing staff and other workers at the University of Ketucky Medical Center. Everyone was WONDERFUL.
This is going to be long-term, so continued prayers always appreciated.
And God is good. And we felt God's goodness in so many ways this week. Many of those ways were very mundane, practical, ho-hum, but they made a huge difference: The moment last night when my dd could eat microwaved chef boy-ar-dee ravioli with a fork like a thirteen year old again, and not need to be fed. The first time she laughed again, when I said something about my creaky old bones. The availability of clean linens, and the fact that they let me do the mom thing by letting me raid the supply closet whenever needed. The fridges of food and drink for late night snacks (or whenever snacks). The availability of the Chaplain, who also happened to be a friend from Church. The priestly visits and prayers with Father Justin. All the visitors we received. The fact that my parents came to help out for a few days. The meals. The child care people gave to my other kids. My warm red sleeping bag. Brownies. And the help being given to rearrange our house....Many good things.
Lowlights included deep fried mac and cheese nuggets on the food cart, catatonia, eating too much, interrupted sleep, skin allergy to adhesives, long waits for everything, having to get stuck nine times before receiving sedation, MRI, CT, EEG, ECG, LP, vomiting from Risperdol, pressure to drink enough fluids, loneliness, isolation and boredom.
I have a real sense of peace about all of this, though...at least for now. I'm sure I'll have my moments.
Why does my beloved daughter have to have such a heavy cross?
For the sake of my daughter's privacy, I don't feel comfortable being very specific about her diagnosis or treatment here on the blog. We ruled out any medical (germs, poisons, toxins, damage) cause for what was going on, and then started experimenting with meds, and yesterday finally found a combination that works, after trying two other different things that did not work. So, we are grateful.
I can say nothing but good about the doctors, residents, nursing staff and other workers at the University of Ketucky Medical Center. Everyone was WONDERFUL.
This is going to be long-term, so continued prayers always appreciated.
And God is good. And we felt God's goodness in so many ways this week. Many of those ways were very mundane, practical, ho-hum, but they made a huge difference: The moment last night when my dd could eat microwaved chef boy-ar-dee ravioli with a fork like a thirteen year old again, and not need to be fed. The first time she laughed again, when I said something about my creaky old bones. The availability of clean linens, and the fact that they let me do the mom thing by letting me raid the supply closet whenever needed. The fridges of food and drink for late night snacks (or whenever snacks). The availability of the Chaplain, who also happened to be a friend from Church. The priestly visits and prayers with Father Justin. All the visitors we received. The fact that my parents came to help out for a few days. The meals. The child care people gave to my other kids. My warm red sleeping bag. Brownies. And the help being given to rearrange our house....Many good things.
Lowlights included deep fried mac and cheese nuggets on the food cart, catatonia, eating too much, interrupted sleep, skin allergy to adhesives, long waits for everything, having to get stuck nine times before receiving sedation, MRI, CT, EEG, ECG, LP, vomiting from Risperdol, pressure to drink enough fluids, loneliness, isolation and boredom.
I have a real sense of peace about all of this, though...at least for now. I'm sure I'll have my moments.
Why does my beloved daughter have to have such a heavy cross?
Comments
Always,
Julie
Sometimes thorns in the side are in other parts of the body/brain/ wherever. Hang in there. And remember to take care of yourself too.
Hugs!
Prayers will continue for you all.
If you need me, I am here for you!!
Love, Joi
So glad you are all home again. I've been praying for you. About the cross ... who can say? I've read so many accounts of peoples' extreme difficulties lately. Sometimes it's overwhelming, but God alone has the answer. He promises grace and strength through the journey.
Shalom!
Sally