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

Dr. Ben Carson on Katya Dueck

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! ;-)

1 comment:

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