365 Days, Again

Note: I began this blog post on April 11, 2013, but due to the highly emotional content and time constraints, I was only able to post it today.

On April 11, 2012, we arrived home from John Hopkins.   This is worthy of note, because we had been gone a little over three weeks.  It was beginning to feel like a hospital where “You go in, but you don’t come out.”    We had been told we’d be in and out within a week, so we packed accordingly. And here we had been in Baltimore over three weeks. Every time Katya would chirk up in PICU, they would send her back down to the floor, where she’d be let slide. Then she’d be back up to PICU, where she would recover, and we’d rinse, wash, and repeat.

Time goes weird, when you have a loved one in the hospital.  Meals can be irregular, and if you’re bedewing a hospital bed, the fluorescent lights wack you out.  Time no longer runs by things like meals and sleep schedules.  Instead, it goes by Meds and hospital shift changes.  It felt like we had been there over a month.  We began to make friends with the security guards and workers in the cafeteria.

After her first crash, we hoped we were out of the woods, so to speak.  And indeed, there seemed to be no reason that we couldn’t go home in a few days.

But on the twenty-sixth of March, Mother noticed that Katya was being lethargic, and “off”.  Her labs were checked: nothing appeared to be wrong, excepting her lethargy and distress while attempting to eat or drink. (As we know in retrospect, Katya had developed severe thrush, which went completely undetected by the plastics residents. They refused to look in her mouth because they “didn’t want to upset her.”)

Baltimore 27-30th 015
Katya on her way to have labs taken.

On the 28th, the Ped’s team, which was called in due to her worsening heart-rate, almost immediately diagnosed her with thrush, and treatment was started.  But it had been let go too long, and by the twenty-ninth of March, Katya had given up on life. Think about it, a seven-year old, giving up on life.   She was dying.  Her heart-beat was going slower and slower– down to 42 BPM, and the most unhealthy looking heart-beat I’ve ever seen. And her blood pressure kept going higher and higher.    The Drs. kept coming in, and feeling her hands and feet, and marveling because they were still warm. “With her heart rate this low, she ought to be having tissue damage!” they kept saying. But they didn’t feel her nose. Her nose was growing cold.  They kept trying anything to raise her heart-rate, telling us, “Move her legs. Agitate her. Make her angry!”

The Drs. didn’t want to believe us–that giving up on life alone could make a person die. I don’t know why–the police know it’s true. According to a friend of ours of that profession, it used to be, during their paint-ball practice, that if you got hit, you were “dead” and out of the game. But officials noticed that officers were dying of minor wounds while on duty, and criminals were getting shot full of holes and making a full recovery. So they set the psychologists on it, and the psychologists said “Change the game.” So now if you get hit during paintball practice, you’re on “desk duty” for a while, then you get to go play again.  Officers who were wounded while on duty had their mortality rates drop accordingly.

Also, I remember reading in a book written by a concentration camp survivor, that a person could come into a camp perfectly healthy, but once they got into a certain state of mind, they would die within three days.  And  Katya saw no reason to live. After all, thrush had ravaged her mouth, leaving her in pain and unable to eat food for days. Having been deprived of enough sustenance once in her life, we think she saw no reason to go through it again.

There was a teenage girl in the bed next to us who was getting discharged that day, along with her parents. I remember standing at the foot of Katya’s bed, staring at her heart monitor. It’s a terrible thing, to see someone you love dying. It’s horrifying.  I was trying not to cry, but a tear or two ran down my cheek, anyway. And I remember turning my head, and making eye contact with the dad, who was sitting at the foot of his daughter’s bed, and… I’m sure he saw the pain and horror.  Something in his face changed, as if for a moment he thought about his child dying… I don’t know.  My emotions were too intense to analyse his.   I’m probably reading too far into it, but  I believe that God orchestrates who we meet and when, and works it all to the good of those that love Him.  And it seems like there was a purpose for me looking over just then.    I like to think that something good was happening during painful time.

Eventually, I had to go back to the Children’s House, because it was supper time.  I power-walked (I had been at John Hopkins long enough that I was getting pretty fast) all the way back, sprinted up the three flights of stairs, gobbled down the spaghetti a volunteer had brought in* and threw together a take-out box for mother. I had to hurry, because Daddy– who was usually pulling the night shifts– was exhausted and needed to sleep before taking it again, and someone had to watch Chad. I power-walked back to the hospital,  and by the time I got up to Katya’s room, they were moving her up to PICU.  It was quite busy.  Katya was in her bed, which was piled with sippy-cups, tissue boxes, a lap-top bag, and Katya’s stuffed animals. Mother was loaded down with her tote bag, which was bulging with Mum’s jacket,  i-pad and charger, her water bottle (which must’ve weighed 5 lbs) a few magazines, and Katya’s bucket of Legos. There were three or four medical personal, trying to manuever Katya’s bed around the hallway corner, and a Patient Rep, who was trying futilely to comfort mother, who had eaten nothing since an early morning granola bar, and was in a fit of low-blood-sugar and stress induced tears.  I managed to stuff the take-out box in mum’s bag, just before they all crammed into the elevator, mother still sobbing.

It is here my narrative becomes second-hand.

All the PICU staff swarmed Katya’s bed, examining her, asking questions and peering at monitors. As the crowd finally thinned, the head Doc on duty–an older thinnish man– sat down and studied Katya’s records,  the graphs of what Katya’s blood pressure and heart-rate had been doing (heart rate declining over the past three days, and then blood pressure rising) even pulling up records up from her intercranial monitoring some months earlier, trying to make any connection. While he was doing that, mum sat beside Katya’s bed, stuffing her face with by now cold and greasy spaghetti, blubbering all the while. Fortunately, by the time the  Doctor  called mum over to show her all those charts,  her blood-sugar had been raised enough that she was in a better state of body, and was able to talk coherently.  The doctor said that the only thing he could think of that would cause Katya’s heart-rate to go down and her blood pressure to go up would be bleeding at the base of the brain, and said that all they could do was monitor her. (Read: watch her die)  While he didn’t state that he expected her to die, that was the impression he gave.  Fortunately for Katya, because there was nothing they could see to do, all the staff, excepting two nurses, cleared out.  And it was those two nurses who saved Katya’s life. They pulled up chairs and asked if they could sit and talk to Mom.

They asked the first sensible question that had been asked all day:

What do *you* think is wrong with her?

Mother told them what she had been *trying* to tell everyone for days: “She can’t eat. She’s been starved once before and she doesn’t want it to happen again.” The nurses asked, “Well, has anyone tried PediaSure?” “PediaSure?” says mother, “No. They mentioned it, but no-one did anything.” So a sippy-cup of PediaSure was brought, and Katya managed a scant 1/4 cup, and went promptly to sleep. Within 10 minutes, her heart rate had noticeably climbed, and her blood pressure had dropped a bit.  The nurses said “Well will you look at that!” and mum shrugged and said, “Told you!”

By morning, Katya’s thrush was slowly being beaten back, and Daddy oversaw her eating a small plate of scrambled eggs. Around lunch time, when I arrived, Katya had perked up somewhat.  When her lunch-tray came, she had no interest in her chicken-strips, and dejectedly pushed the tray away.  But Mum and I were determined, so we offered her the cookie. Katya was interested, and ate that cookie very smugly. She seemed to know that being allowed a cookie for lunch was special.

Katay cookie

Every time Katya ate, her vital signs improved a little more!  We got such pleasure out of watching her eat. The PICU nurses were plumb-tickled that they had been able to help her so easily.

By tea-time, I was running multiple times down to the cafeteria, and fetching up trays of cucumber and beets. By supper time, her thrush had healed enough that she was eating tomato slices.

As the multitude of specialists who came in to check on Katya would hear of her miraculous improvement, they would look surprised and awkward, shuffled their feet, clear their throats, and give weak medical explanations as to why she made so much improvement–none of them involving food.   Except Dr. Carson, who said,

 Well, the mom was right, as usual.

The Cardiologist finally said: “I’m putting in her charts, ‘Feed this child!'”

Someone said that someday I’ll  look back at having Katya nearly die as one of my fonder memories.  I don’t think that’s so.  I don’t like *movies* where someone is badly hurt or dies, why would l enjoy having my little sister nearly die?  I can, however, appreciate some things from it.  Firstly, it matured me. Being matured over a short period of time hurts, but being mature is good.  Secondly, I fight harder for Katya, and love her in a slightly different way, than I do my other siblings.  At the moment, Katya’s health is fairly good, and she’s overall relaxed and happy, except for constantly being frustrated due to her lack of communication. We sent her off to school this morning with a grin on her face.  But when you know that banging her head against the corner of a table could kill her, that what would be a small concussion for another child would for her be death, it makes us assure her of our undying affection a little more often, and squeeze her a little tighter.

*If you ever bring a meal in to an establishment such as the Children’s House, be warned that we got *a lot* of spaghetti  and other pasta dishes. They were good–but we had a lot of them.  Foods that are easy to transport are great.   Also, make sure you bring enough.


5 thoughts on “365 Days, Again

  1. This must have been extremely hard to write. Thanks for sharing your perspective, Charity. It was hard to read but your writing really brought that day alive. (Copied to blog comments)


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