"We are going to focus on LIFE for Katya. I believe, one day, she will amaze the world."

Dr. Ben Carson on Katya Dueck

Monday, October 26, 2015

Katya Needs Prayers

Katya has not been really well ever since her surgery. She was doing better, then slumped. She has been to the Doctors multiple times, has had tons of lab work done, and now today, with her **STILL** sick, we took her to the Doctor again and ended up finding out that Katya has: a fever again of 99.6 F, swollen lymph nodes, a "beefy, red tongue", and "odd sounds in her lungs". Additionally, she had sores on her face that are concerning.

So a lot of swabs and cultures were done, we were sent to get labs and X-rays. The results of the X-rays are back already and we know that Katya has pneumonia in her left lung. For right now, we are allowed to keep her at home with careful watching and management. We have our orders, and know what to do and when to take her to the ER if need be. Depending on the lab results tonight or tomorrow AM (whenever the Doc gets them) we may have to take her to the hospital to be admitted. That is not a happy thought  . . .

Additionally, Chad has been struggling and we were thinking it was "just" his asthma but now we don't know so he has an appointment for tomorrow AM to get checked as well. Just need to make sure he also does not have pneumonia since both kids got sick with seemingly the same thing last week within about 24 hours of each other.

I can't say thank you enough for all the thoughts, support and prayers that have already come our family's way, and I thank you for continuing in prayer for our precious Katya and Chad!

(Katya getting one of multiple swabs done today.)

Friday, October 23, 2015

Flashes of Hope

The day Katya got her final head drain out, and removed her NG tube (more on that in another blog post some time!), the amazing Child Life Specialist, Peyton, offered to take us down to the CCTV Studio where an organization called, "Flashes of Hope" was set up and taking pictures of the children and any family members who were around and wanted their photo taken with the child. The timing of this offer was impeccable--Paul had just arrived back in town the night before after working away from us 10 [tough and lonely] days, Katya was finally feeling well enough to smile, and naturally my heart was over flowing to be back with my hubby and a healthier Katya.
The emotions I feel every time I look at these photos are huge. If you look carefully in the photos, you can see Katya's IV port, my hospital ID bracelet, and other things that hint that this is not a normal photo shoot. Her head was full of 40 staples still and she was in her PJ's.  But Katya was alive, after having survived an undiagnosed surgically acquired infection for days, an emergency surgery to remove all her small bone grafts (due to being overwhelmed by the infections from two different common skin bacteria that some how were introduced into her surgical area) and a handful of other stressful events. The joy and relief we all felt was huge. And I love that the photographer was able to capture these emotions.

I will be forever grateful to the photographer who was willing to come and capture that day for us. Katya missed her school photos this fall due to her surgery (and her school does not do a "make up day" for school pictures). I had been feeling very sad about that. This does not replace school photos by any stretch of the imagination, but it is still a nice record for Katya and us.

Thanks to "Flashes of Hope" we have these moving photos to share with our other kids and for Katya to look at over and over to help her process her hospital stay. They did a great job capturing Katya and snips of her personality.

Tuesday, October 20, 2015

Home Sweet Home

We have been home for over a week now and are still trying to catch our breath and catch up (not sure that will be possible?! HA!)

The trip home was pretty uneventful, thankfully. The weather was great, we saw lots of gorgeous fall scenery, and Katya did beautifully traveling.

The next day, Katya was pale and acted a little lethargic, and we didn't think a whole lot about it, assuming she was just worn out from the traveling and getting home late.

But Saturday she slumped a little more. And while she stayed about the same Sunday, by Monday she was worse. And at our primary care physicians office she laid entirely listlessly for a whole 20 minutes on the exam table. The PCP couldn't find anything to explain the low grade temp she had, nor the listlessness, so sent us off to town for lab work.

And that is how the week went. Katya just clearly did not feel well, she didn't look well, and she frankly was worrying our PCP tremendously. In that week's time, she saw two different Doctor's, and had labs drawn 4 times.

In addition to all that, (along with phone calls and texts from the Doctors as they were trying to figure out what was going on) I was also getting texts and emails and phone calls from her Doctor's at Johns Hopkins as everyone tried to figure out the puzzle!!

Finally, by Friday evening, we were told by her Hopkins Doctors that they were concerned that the risk factors of the antibiotics she was on were becoming greater than the risk of the [surgically acquired] infection overwhelming her system again, and they wanted us to pull Katya off the Levofloxacin and Vibramycin antibiotics that she was on and just "wait and see" how Katya does. That was not an easy thing to hear, because frankly none of us were sure that the infection is completely beaten back, but Infectious Disease Doctors and her Surgeon both felt that some of the deterioration we were seeing with Katya could be related to the antibiotics, and that it was worth the risk of stopping the meds after she had been on a full 4 weeks.

Sunday was her last day of antibiotics, and now we are in the "wait and see and pray a ton" stage. We are also choosing to support her immune system with some specific things that her Doctor wanted us to try so hopefully it helps and Katya comes out of this well and healthy without the need to return to Baltimore for more medical treatment.

Today, Katya has been acting bored and seeming to have more energy, and so we asked her if she would like to go back to school tomorrow. She said she would, so we are hopeful that we can wake her up in the morning in time to send her! She has been needing a LOT of sleep each night and hasn't come any where close yet to waking up at get-up time for school even though she is going to bed on her school schedule! So we will see how it goes in the AM, but we are hoping she is able to wake up and go to school. She has missed so many weeks of school that I hurt about it as she was doing so well this year and I hate every single missed day for her because I know it's a school day she can never get back. She was not cleared by her Docs to return of course though when she felt so clearly lousy.

At least having her home for awhile allowed for such cute scenes like this in the mornings! ;-)

Wednesday, October 7, 2015

Finally--Headed Home!

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.