365 Days Ago…

Forward: I type all this up, because last night it suddenly struck me that it had been a year since Katya “crashed”.  It was an event so monumental that our time is now divided up into “Before Katya Crashed” and “After Katya Crashed.”   I had forgotten how emotional that time was, until I saw my calendar last night, with “Passover Begins” typed at the bottom of the square.  I remembered, suddenly and acutely, standing in the dark kitchen in the Children’s House, watching a candle burn.   And with that memory all the emotions came blowing back, and I couldn’t sleep for a very long time. Just thinking that at that time last year I was standing in a dark kitchen, fearing for my sister’s life.

370 days ago…  Katya had her Cranial Surgery.

369 days ago… I went to see Katya for the first time, in Blalock. I was only just recovering from an asthmatic cough, and that was the first day I was able to stop coughing. I remember I was really nervous, because I was younger than I was by the time we left Baltimore nearly three weeks later.   I wasn’t used to going through the hospital, and mum sent me one elevator shaft too far, and I came out near the psychiatric ward.  It really quiet. No one was around.  To my right was a large set of fire-proof doors, to my left was a set of fire-proof doors, my back was to the elevators, and in front of me was yet another set of fire-proof doors with “Psychiatric” written on them in large letters.  I think the halls had gurneys and such against the walls. I remember calling mum and rather desperately asking her “Where *was* she?!?”  As I said, I was younger, then.   She sent the Russian Interpreter to fetch me.  Turns out I needed to go left.  I was relieved, to say the least.   I never ended up in that hallway again, because I took the nearer elevators after that.

Katya looked awful– on my Facebook, I posted that : “She is just as cute and loveable as ever, even if she does look like she got the worse end of a brawl.”Photo: Katya playing legos, Amy Wakefield

365 days ago…   One year ago last night, to be exact, Katya crashed. The inept Plastics Residents allowed her to severely dehydrate, and let her pain and swelling get out of control.  Once in PICU, the “Kick Coccyx”  Dr. Karina said to mother that, if Katya should code right then, she was not sure she could establish an airway.  Once the PICU Doc ordered her surgical drain tube stripped  (which the nose-picking residents had allowed to clog) Katya very quickly stopped her screaming. She had been bellowing like a tortured sheep for hours, signing  “Help! Owie!” and pointing at her head. The nurses and residents on the floor had said that she was  “Just angry.”    Other people we know, who also have non-verbal children, say that it’s common for people to ignore a non-verbal childs attempts to communicate.

Let me tell you now, that it is one of life’s most noble causes, to be a voice for the voiceless. Many of the “missions” you see around the place are based around that concept, indirectly.  People who oppose poaching and habitat destruction are voices for the animals who have their lives destroyed.  Those who dig wells in arid areas are voices for the thirsty.   People who make it their business to provide beds for orphans are the voice for children who have to sleep on mattresses and bedding that everyone else would burn.      Don’t EVER ignore what the voiceless are telling you, even if it hurts.     Find someone who can’t speak up for themselves, and speak.

365 days ago…  Katya had been moved up to PICU in the night, and after she was stable, I came to see her that day, around lunch time.  I had, with much trepidation, got myself Subway to take up to eat.  (remember, I had only been in Baltimore a week, and was younger then)  I remember being stressed for some reason, but when I cross compare notes with mum, I think I’m remembering a later event.   Regardless, I was sitting in PICU with her, eating my chips.  From my Face Book: “She was eyeing my food, and once I got to the chips, she made an unhappy Uh!Uh! sound. I asked her what was wrong, she signed “want”. I asked her what did she want, she pointed at my chips. So the nurses got her applesauce.”  It did my heart good, to see her enjoying each bite, and savouring the texture.

In a side note, there was a foster-care baby in a crib beside us.  Only his mobiles to keep him company. So sad.

(Note: The quality of the pictures is poor because I copy-pasted them from my Facebook.)

She felt good enough to sit and watch Signing Time.

As you can see, she had not yet lost her interest in life.

Despite the torture the “untrained monkey residents” put her through, she clung tenaciously to life and then recoverered rapidly, when she was in PICU.  As soon as she was down on the floor again, she began deteriorating.  Which I shall tell you about some other time when my  emotions have recovered from this recounting. That batch of Plastics Residents sucked, but if I was sick, the John Hopkins PICU is where I’d want to be.  God bless the PICU nurses and Doctors.

In present day, Katya is quite healthy. She came up to me not long ago and signed “Come. Play!”.  While 365 days ago last night she was crashing, last night present day she lovingly gave me 5 hugs when I tucked her in, and settled down to sleep with not a thought of pain.  I am *so* grateful that God saw fit to prolong her life. She’s just a really cool kid.

For further pictures of our time in Baltimore, see my March and April archives.

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4 thoughts on “365 Days Ago…

  1. Cherry- you are wise and mature beyond your years, and your writing is always so interesting!

    Katya certainly did go through a lot! (as did her loved ones!) I am only a sort of recent reader….what exactly (short hand version) did this surgery do, and will she have to have additional cranial surgery? I recall her baby photo….did this surgery build out her skull?

    Bless you!

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    1. It was a major “Anterior Vault Cranial Reconstruction”, which enlarged her skull. The surgery is usally done before the child is two, but Ukraine didn’t bother. The Drs. cut her head apart, from forehead to ears, fastened the bone over mesh and plates, and even patted the bone dust over the mesh, trying to get her head big enough. Her poor brain had been jammed in her skull, with lots of damage from the pressure. Her Neurosurgeon, Dr. Ben Carson, says that she had few, if any, days in her life where she felt good and was pain free. They also relocated her eye,which was skewed off and up to one side.
      The surgery was considered an overall-success, in terms of creating for making more room for brain, but she has probably three more surgerys ahead of her–one on each eye, and a big nasty one to fill in some remaining soft spots, using bone grafts from her hips.

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      1. Wow! That is more than I ever thought it was! I am glad that major surgery is behind you all, especially Katya. Those Johns Hopkins dr’s are about the smartest there are. One time, an ophthalmologist there corrected my eyeglass prescription, over the Internet, just based on a couple e-mails and I gave him the prescription I had. I wear prisms in my glasses for double vision, so it gets complicated with prisms going in different directions.

        But reconstructing her head like that, is more than I could imagine.

        Thanks for helping me understand!

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