Thank God! After leaving home after church September 6th, we are *Finally* headed home tomorrow on October 8th. We are so excited to be able to go HOME! It has been quite a journey for our family, but God has been so faithful and with His help and the support of so many, we have survived this challenge.
Katya has been an amazing fighter--we are so very proud of her! With the support of the amazing Child Life team this time at Hopkins, Katya weathered so many huge challenges. Last time she was hospitalized (in 2012) so many of the hospital procedures were hugely traumatic for her. I entered the hospital this time with a fierce determination to get in and back out with out any post traumatic stress events for her. Thankfully, I was able to accomplish that goal thanks to how protective and supportive not only the Child Life staff was, but also Katya's nurses! In general, we felt we had much support for this goal also from the physicians and other staff who cared for her this time and so I am very happy to report that we went through two surgeries and many procedures during a total of TWENTY FOUR DAYS in-patient and got back out successfully! I can not stress enough how very huge this is for Katya. Her self confidence actually grew during her hospitalization as she successfully went through new and scary things with lots of support and encouragement.
Today while we were snuggling and chatting, I asked Katya if she had been scared while she was in the hospital. She signed "yes" but was unable to answer, "What made you scared while you were there in the hospital?' until I handed her the Ipad. Then she quickly replied, "Ouch". "You were scared of things that hurt you?" I asked her, and she signed, "yes". I told her that she had been so very brave--that even when she was scared of things that were hurting her she had tried hard to cooperate and do what she was supposed to so that the Drs and nurses could help her to get better. Her sweet face lit up a little and I could see in her eyes that she understood. I asked her then if she was glad that the Doctor's had been able to fix her head so much and that her big soft spots (which used to bother her if someone accidentally touched her head there) are gone. Her face lit up again and she signed, "yes". So I feel satisfied that we made the right decision.
During the awful few days when things were all up in the air after it was becoming apparent that Katya had a serious infection in her skull area, and then the night when we *knew* she was a very sick girl and was facing surgery again, there were times when I wondered if we had made a horrible mistake to go through this surgery. I had to keep going back over our decision making process and asking myself if we had made a mistake. It was not a fun process. But I kept coming back to this phrase--"There is no way out but to go through this." And then it would echo in my head--"through this . . . through this . . . "
And corny as it may sound, that phrase gave me courage to put one foot ahead of another. To walk into that OR on a total of 1.5 hours of sleep, set aside the tears that wanted to flow and to sing Katya's favorite song to her while she drifted off to sleep for her emergency surgery.
And now we are out on the other side mostly and it looks like we have come through this with the "best case scenario" so far. We don't know yet, and won't know for sure for several more weeks until Katya has completed her course of treatment and is off her medications for awhile whether or not we are completely through with this chapter of our lives. But we feel hopeful, and so does the staff who is caring for her. Everyone says Katya has recovered faster and better almost than they had dared to hope for.
We give thanks to God for her improving health, for her fighting spirit, for the excellent care she had, and for the fact that so many people around the world have loved our Katya and been praying for her and our family.
I have had a few people ask me if our experience this time was worse than our previous time. No, absolutely not even though this time was longer and had it's share of challenges. But things overall were much better and more stable for our family in so many ways. I could give a long list of ways it was different than last time, and while I may some other time, I won't tonight.
Katya's experiences this time were overall so much more positive that we are glad we made the decision to return to Hopkins and allow them a "chance to show they can do it better". It was better this time. So much better. Yes, something went horribly wrong during the surgical process that the infection was able to take root and overwhelm her body. There are no clear answers forth-coming about that, and there likely never will be because while it's as obvious as can be that *something* went wrong some where, I doubt any one but God knows for sure. Infection--even life-threatening infections--are sadly a risk of surgery even though typically things go well. To me, while of course I'm unhappy that Katya and our family had to go through that, what is most important is that she received good care once the situation was figured out. Her surgeon did his due diligence caring for her once he figured the situation out, and that is what matters most to us.
Additionally, his team of residents this time was extremely respectful and mindful of Katya, and showed themselves to be a bright and likely group. His newest Chief Resident was an amazing woman who quickly figured out how Katya was ticking and worked in very intuitive ways with her to accomplish things like getting out a head drain and a head full of staples. Those things count for a lot.