The first day we were only able to travel about 1/3 of the distance, due to needing to stop every hour or so to allow Katya to lay down in my arms and rest for awhile. If we didn't do that, she would first turn ghastly white, and then begin to turn blue again. The Doctors don't know why she is turning blue if she's up for awile, but theorize that it's due to her body simply being too weakened and worn to cope with the stress of being up. As she turns blue, she will begin trembling and shiver as if she is cold, even though she is not. It's scary to see her like that, and can't feel good to her at all, so the frequent stops were gladly taken by us, in order to keep her feeling better.
We stopped for the night in Grantsville, MD and shivered our way into the building through the snow! After three weeks of very warm spring-like/summer-like temps in Baltimore we were not prepared physically NOR clothing wise for SNOW. However, the hotel was plenty warm and so we were fine once we were inside. Katya didn't have a very good night--woke us up around 5:11 a.m. shrieking with terror and it took a long time for her pounding little heart to calm down and her to relax enough to go back to sleep. She woke back up soon after 7:30 a.m. and so that was pretty effectively the end of our night, although Paul and I did try to doze a bit more after Charity volunteered kindly to take her to get some food to eat.
The travel on Wed. seemed to go a little better, and we were able to make better time, plus we had a much earlier start in the a.m. We stopped for lunch at a Mexican restraunt and Katya enjoyed nibbling on chips and salsa.
She holds her neck alot in the area where they had a large bore aterial line during surgery. I think things must still feel tight and tender to her there, even though surgery was over 3 weeks ago now. This view also gives a good look at some of the swelling from the cerebral spinal fluid leaking from her dura.
We arrived home Wed. mid afternoon. It was so good to be home after over three weeks away! When Todd and then later Kristina, arrived home that evening, it finally felt "right" again! Katya was worn out and mostly just laid around, but she too was clearly glad to be home and smiled happily when Todd showed up. (She was asleep by the time Kristina arrived back, as Paul had to go an hour north to meet her, and then back home, after dropping us off.)
Our life is still nothing back to "normal". Katya is not allowed to go to school--probably will not be allowed to return till next fall. She is too medically fragile, and physically worn out. She's on several meds every eight hours, and I have to take her weekly for lab work. Additional meds might need to be added depending on the lab results over the next 8 to 10 weeks. There are also follow-up appointments.
Also, Katya doesn't feel well and wants to be held for hours every day by Dad or Mom. That takes huge chunks of our time, but I know it's important for her right now. We have been managing, but this week it will be harder as Paul has a full week of work lined up and we won't be seeing him much at all for the whole week. Your on-going prayers for Katya's healing and our family's strength are appreciated!
I leave you with a photo taken today of Katya with her Daddy. When she woke up this morning, we decided that we are fairly sure that for the first time since she was started on the meds to try to reduce her CSF swelling, that it's a bit less! When I look at these photos compared to the ones taken just mere days before that I posted, I'm even more sure that the swelling has lessened. That gives us hope that the regime Dr. Carson has her on is working and that hopefully she will not need another surgery to find and patch the leak . . . we will keep praying that way.