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Thus Sayeth the Lord--The Blog of Scott M. Roberts
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17th-Dec-2012 03:10 pm - Favorite Eric James Stone Story

Originally posted at Thus Sayeth the Lord...

My favorite +Eric James Stone story has got to be ‘The Robot Sorcerer’ published in Orson Scott Card’s InterGalactic Medicine show.

Now, understand: Eric James Stone is a force of purest evil. So it has always surprised me how very evocatively he writes about personal sacrifice. And not the kind of sacrifice he’s wont to perform on a dark midwinter midnight, blade in hand, and with altar’d goat. But actual, soul-redeeming sacrifice that both enlightens and empowers the reader.

The Robot Sorcerer is Stone’s best work in this vein.

This post is written in the hopes of winning his old kindle, which I’m given to understand is sheathed in leather drawn from the hides of four black kittens, four white-masked puppies, four children of prophecies-no-more, and the last centrist Democrat in the United States.

Here’s a link:

http://www.intergalacticmedicineshow.com/cgi-bin/mag.cgi?do=issue&vol=i10&article=_007

28th-Nov-2012 05:30 am - Brain Tumor

Originally posted at Thus Sayeth the Lord...

BACKGROUND

After Tiptoe was born, M got a clot in her leg.  The clot was dealt with normally through a regimen of blood thinners.  However, shortly after that, M and I began noticing that she was having problems connecting thoughts to language.  She was also having intermittent problems remembering how to do routine tasks (like how to properly fill out a check).  As the years went on, these problems grew worse, but we didn’t know to what to attribute them– stress, sleeplessness, etc. 

M had gastric bypass surgery last May.  This helps her lose weight by preventing her body from absorbing a lot of the food she eats.  She has lost about 80 pounds since May and looks great.

PRESENT

A couple months ago, M began having numbness in the side of her face and in the ends of her fingers.  These episodes of numbness would last only about a minute or two, and were not otherwise inconvenient.  The numbness got progressively more intense, however, and her speech began to slur during the episodes.  She never experienced any pain during these episodes.  A couple weeks back she went to the family doctor, who scheduled her for an appointment with a neurologist on December 10.

Last weekend– Thanksgiving weekend– M and I took a trip to Williamsburg to go to Colonial Williamsburg and Busch Gardens.  While walking through the folk art museum at Colonial Williamsburg, M fainted.  There’s about a 30 second gap in her memory, but she was conscious the whole time.  She was a little disoriented, and somewhat non-responsive, but she was able to walk to a bench and sit.  Within 30 seconds of sitting, she was back to normal.  (I was terrified, but she was okay)  She didn’t feel like she needed to go to the hospital so we didn’t.

Throughout the rest of the day, she said the right side of her body felt a little odd.  When we’d walk up hills, she noted that her foot dragged a bit.  The next day in church, as she was playing the piano, she couldn’t keep the rhythm with her right hand.  She made the decision to go to the emergency room as soon as we left church.

DIAGNOSIS

A CAT scan done in the emergency room found a tumor in the left frontal lobe of her brain.  An MRI confirmed it.  The tumor is surround by a number of cysts which are pressing down on the tumor and against the skull.  The pressure is apparently what is causing M’s symptoms of numbness, inarticulate speech, etc.  An MRI confirmed it.  The tumor covers most of her left frontal lobe.  According to the surgeon is regular in shape, with a number of “wispy tentacles.”  The tentacles may be other tumors, or they may be artifacts of the pressure.  The tumor is 5cm x 5cm, and goes into the brain tissue about 3 cm. 

The tumor appears to be very slow moving– it may be as old as 14 years.  This is one indicator that it is benign (i.e., not cancerous or aggressive).  However, the wisps may indicate it is (or has become) cancerous.  The neurosurgeons will perform a craniotomy to physically access the tumor and remove a sample of it for analysis.  During the same surgery, they will attempt to remove as much of the main tumor as possible to relieve the pressure on her brain.  After full analysis of the tumor sample (10 days or so), they will begin a regimen to completely remove it using radiation and possibly chemotherapy.  (Let me re-emphasize that we won’t know until the biopsy of the tumor is done whether or not the tumor is cancerous)

There are a couple complications for the surgery.  M’s history with blood clots has the docs on edge, so they are putting a filter in her inferior vena cava (near the heart) to head off any clots that may develop.  This surgery is not a big deal, according to the docs.

In addition, she is protein deficient due to the gastric bypass.  The protein deficiency may make it hard for her to heal from the surgery, so the surgeons want to get it up to normal levels before they operate.  We have a week or so to pack as much protein into her diet as possible– which means she may have to resort to protein shakes and supplements (which she hates).

Another CAT scan was done yesterday to make sure that the tumor has no cousins in any of the rest of her body; we’re still waiting on results from that, but the neurosurgeon was confident that we’re just dealing with the one in her brain.

We expect that the surgery will take place some time late next week, or early the week after, and that it will only take four hours or so.  After surgery, she’ll spend a few days in the hospital recovering.  She will continue recovering at home; full recovery from the surgery won’t be made for about three months.  And of course, depending on the radiation/chemo regimen recovery may take longer.

LOVE

Let me not to the marriage of true minds
Admit impediments. Love is not love
Which alters when it alteration finds,
Or bends with the remover to remove:
O no! it is an ever-fixed mark
That looks on tempests and is never shaken;
It is the star to every wandering bark,
Whose worth’s unknown, although his height be taken.
Love’s not Time’s fool, though rosy lips and cheeks
Within his bending sickle’s compass come:
Love alters not with his brief hours and weeks,
But bears it out even to the edge of doom.
  
If this be error and upon me proved,
I never writ, nor no man ever loved.
– William Shakespeare, Sonnet 116

We’re apprehensive– okay, I am apprehensive– but unshaken.  :smile:

We have a plan for moving ahead; we have an expectation for success.  We have great friends and families whose love we feel and whose strength we trust.  M is looking forward to hopefully having her speech capacity back– and that’s what we’re focusing on. 

9th-Nov-2011 08:16 pm - Monsters and Mormons Virtual Launch

Originally posted at Thus Sayeth the Lord...

Details

I’ll be doing the first Google+ interview/reading, at around 10p (Eastern).  Then I’ll be on the WriteChat channel, and Facebook. 

I’m totally psyched for it.  I’ll be reading a different section of the story than the excerpt I posted here; if there’s time, I’ll share some tales about the god, Zeus.  I met him in Torino, Italy. 

Totally not kidding.

Originally posted at Thus Sayeth the Lord...

My short story, Out of the Deep Have I Howled Unto Thee, is now on sale as part of an anthology called Monsters and Mormons. 

By my count, the anthology collects 25 stories, 3 poems, and 2 graphic novels together in a ~600 page volume touching pulp traditions and themes within the context of the beliefs (some very non-doctrinal) of the Church of Jesus Christ of Latter-Day Saints (Mormons).  I think it’s a worthy volume.  The tone is wide-ranging, from Lovecraftian weird to outright-Mel-Brooks silliness, to occasional theological musing.  There’s something here for everyone, even the fan of military science fiction, believe it or not. 

Here’s an excerpt from Out of the Deep.

Out of the Deep has a long and twisted backstory.  It was originally titled Lead Kindly Light, in tribute to my favorite hymn; and Clark originally wanted to get rid of the Wolf in order to reconnect with the family he’d abandoned.  As I got critiques back and as I thought more about the story, I began to prefer a more spare framework for Clark’s struggle.  I decided to drop the family/redemption angle in order to highlight the idea that Clark’s battle against the wolf was intrinsically valuable. 

By making it so spare, I realize that I’ve opened an avenue for readers to accept the story as allegorical.  That’s intentional.  I’m happy to accommodate varied and wide interpretations of what Clark’s story means.

19th-Sep-2011 05:56 pm - Home!

Originally posted at Thus Sayeth the Lord...

Last Wednesday, M called me at work to say that they had decided to pull out Tiptoe’s chest tubes.  We were very anxious about the decision; we have a number of acquaintances whose children’s chest tubes were pulled out too early, and then they had to go back to the hospital because of fluid collecting around the lungs.  In fact, Tiptoe had the very same reaction after her first surgery.  We had been told that in order to be a candidate for removing the chest tubes, her fluid output would need to be below 100cc.  But the surgeon came in to see her on Wednesday, and said she was too healthy to be in the hospital, and that he believed that her body could absorb the extra fluid.

That’s been borne out so far.  As far as we can tell, she’s having no problems with breathing or moving around, and she’s a LOT happier.  After staying with her on Wednesday night, I took Thursday and Friday off of work to be with her and the rest of the troupe.  We had a long, glorious weekend of doing nothing but getting used to one another again.  We’d been in the hospital almost a month—it was beautiful to have everyone back together under the same roof.

Tiptoe is still in some pain; she lets you know when the Motrin wears off.  But she’s also wonderfully active and cheerful.  And a bit noisy.  Smile

There are some things we’ve noticed that we’re concerned about:

1) She seems thinner than normal.  She’s always been a bit slight, but this is something all of us have commented on.

2) Her face is pale, and her eyes appear a bit sunken and dark.  I assume this is because she’s on diuretics 3x a day; but she continues to have very heavy, wet diapers, and her lips aren’t chapped, and she’s not listless or any of the other signs of dehydration.  She drinks a lot of fluid.  On that note, she may be a bit constipated; she produces, but the stools are very small.

3) She gags occasionally like she’s going to throw up; in fact, she has vomited a couple times.  We’re not sure what to think about it; it’s not a consistent symptom that we can track, and it doesn’t appear related to eating, or to the content of what she’s eaten.

4) One of the sites where the chest tube was inserted is…just gross looking.  It’s like a pale yellow plug of something where the incision was.  It doesn’t smell bad, and it’s not runny, and the flesh around it isn’t red or warm; I don’t think it’s infected, but it just looks disgusting.

I’m more worried about her now that she’s at home and running around than I was when she was in the hospital.  We’re too close to her release; I keep expecting the hammer to fall, for the rug to be yanked out, for the shoe to drop on my face.  All that.

Originally posted at Thus Sayeth the Lord...

I’m afraid there’s not much new to report with Tiptoe; she continues draining between 200-300 cc per day. 

Our surgeon, Dr. Jonas, visited her today, and said she needs to eat more; to feed her as much non-salty junk food as she will eat.  How often does a kid get to hear that?  Our kids, not that often.  But the problem is that Tiptoe has ALWAYS been a poor eater.  Even when she was at her very best, she didn’t eat a whole lot.  And she’s unpredictable in the kinds of foods she likes, too.  One day, she’ll scarf down chicken nuggets like there’s no tomorrow; the next, she won’t have anything to do with them.  Ditto snacks like candy, ice cream, chocolate, chips, etc.

Tomorrow, I’m going to the grocery store near my work to buy little cups of ice cream, hot dogs, string cheese, crackers, spreadable/spray cheez, grapes, etc., all in an attempt to get this girl some calories.  I’m making a big batch of tortellini (which is one of the foods she will eat consistently) to bring with me.

You know what the problem with being at home is?  You can’t do ANYTHING.  At the hospital, you at least have the illusion that you’re doing something every moment to add to her recovery, and help her get home.  Even though you’re usually at wits end trying to entertain a child that is one dropped toy away from a complete breakdown, you are engaged in the work.  You are there, with her, and you can put you fingers on her, and touch her, and talk to her, and maybe convince yourself that you are at least being an active part of her life.  You can give her her medicine.  You can play with her.  It’s boring as all get out, honestly, but I miss it when I’m not there.  I miss it terribly.  So even though I’m not looking forward to spending more time in the hospital, I want  to be there.  I want to get my hands dirty, as it were.

Of course, it’s not as futile as all that.  It just feels like it sometimes.  Then other times…well.  Tiptoe let me hold her for the first time since her surgery on Sunday.  Really hold her—I got to scoop her up in my arms, and hold her horizontal across my chest, so her head was in the crook of one elbow, and her legs dangled over the crook of the other.  It felt good.  Really good.  It felt like I was doing something worthwhile after all.  It was the redemption of a weekend that had been otherwise, very, very frustrating.

That’s what I’m going to keep in mind as I bear this out.  I hope she lets me hold her again.

7th-Sep-2011 01:54 pm - Roller Coaster

Originally posted at Thus Sayeth the Lord...

The good news is that Tiptoe is in less pain than she was last week.  M and I both have 09-07-2011 004noted how happy she is (when she’s happy).  She seems fairly comfortable and is engaging and playing with us as normal.  We spent a lot of the weekend playing with her bunny puppet and her Mickey Mouse doll; M got her a big balloon and the bunny would grab it and haul it down for Mickey and him to bounce on, trampoline-like.  Then Tiptoe would push it away and squeal as it floated up to the ceiling.  Repeat ad infinitem.

Also: she’s in love with stickers.  Her grandmother (above) brought her a couple ziploc bags full of them and a big package of construction paper.  Tiptoe was not happy with the rationing that I had to enforce after she burned through one whole bag in a single hour…

We had the same nurse over the long holiday weekend so we were able to set up a schedule that suited Tiptoe’s needs, in terms of getting her medicines and vitals and so on.  We worked it out so that instead of coming in at 10pm to do vital signs (weight, blood pressure, temp) they came in before bedtime.  We got her medicines scheduled to allow her to get 6 hours of uninterrupted rest, and eventually took her off motrin so that she could try to sleep through the night (not quite successful with that one…). 

Of course, last night she got a new nurse who apparently wasn’t kosher on the schedule we’d configured. 

While most of that is good news—and believe me, we’re appreciative of it—the problem with drainage is ongoing and not really improving.  Here’s what’s happening, as I understand it:

After trauma to the heart (such as open heart surgery), fluid begins to collect in the sacs that surround the lungs.  If not dealt with, the fluid begins to press against the lungs, making breathing difficult.  Since breathing is labored, the lungs can’t get oxygen to the blood stream as effectively.  Without an adequate supply of oxygen, the body starts to fail.  Two methods are used to dispose of this fluid: 1) Chest tubes are inserted through the chest into the sacs to allow them to drain; 2) patients are given diuretic medicines (lasix) to help them pee and get rid of the fluid naturally.  When the fluid from the chest tubes gets down to a manageable level (for her Norwood operation, “manageable” meant less than 40 mL/day, I think), the chest tubes are removed and the holes are allowed to close.  Patients are kept for a period of 24-48 hours to make sure that the body is able to cope with the fluid on its own, or with the assistance of lasix.

The first time Tiptoe had a heart surgery, they took out the chest tubes too early.  Her lungs began to fail a day or so later , and they had to reinsert them, which no one was happy about.  We don’t want that to happen again.

The output from the chest tubes is hovering around the 200-300 mark.  The surgeon has 09-07-2011 002said that if it can get down below 100, they’ll start evaluating when it’s time to take the chest tubes out.  Until then, it’s just a waiting game.  There’s no rhyme or reason to who puts out more fluid; it’s apparently something every cardiothoracic physician/surgeon looks at and studies, but no one has drawn any provable, replicable conclusions for how to improve the situation.

Other than time, I mean.  Time heals all wounds, or whatever. 

1st-Sep-2011 06:39 pm - Doing better, but still hospitalized

Originally posted at Thus Sayeth the Lord...

Sunday afternoon we were transferred to the regular Heart and Kidney unit (out of the cardiac intensive care unit).  This meant a lot of changes, and not all of them positive.

Of particular concern to us was that the nurses staffing the unit didn’t seem as competent or concerned with Tiptoe’s care as they did in the CICU.  M and I have known fantastic nurses; nurses who met and exceeded our needs as parents and advocates for Tiptoe.  When we meet them, we make sure to let them know how much we appreciate their work on our daughter’s behalf.  A good nurse is a blessing.

I don’t think we had any bad nurses; we have had several that just didn’t get the job done  very well.  They were perfectly nice—but not what I would call competent.  They seemed comfortable cooing and making baby-talk at Tiptoe, but not in managing her wires, or answering our questions, or engaging us in Tiptoe’s care.  They were not responsive to requests made for pain medicine; they seemed unconcerned by alarms going off.  (We timed it—three minutes for a response to an apnea alarm, on a toddler whose respiratory system is distressed, cannot be considered an effective response.  Thank goodness it was just a faulty monitor—Tiptoe wasn’t even asleep.  Still: the nurse hadn’t been in to see her in hours, and we hadn’t seen the nurse in the hall, even.  It’s the what if’s that are frightening.)

This is one of the reasons why one of us is always with Tiptoe in the hospital (when they allow it): because we cannot control which nurse gets which patient, but we can work to get her the very best care possible.  The child is in pain, intimidated, and hardly vocal; it’s up to the parents to be vigilant and involved.

I sound like Mad-Eye Moody.  Smile

When she was moved out of the ICU to the floor, they removed her arterial line, and had to replace the IV in her arm.  In typical Tiptoe fashion, all her veins were unavailable.  And unassailable.  Children’s has a “professional” team of IV folks; their one job is to get an IV.  Five sticks, and it was no joy.  They postponed the IV putting in for a while; later that evening, they were able to get it in one stick.  They did a lot of prep work, which Tiptoe didn’t appreciate, but I did; when he found the vein to tap, he was able to do it quickly.  What’s that old saying?  Measure twice, cut once; it applies to IVs, too. 

We got roommates on Monday afternoon—a couple with a tiny baby.  Poor thing was up all night, mostly because Tiptoe was up all night, whining and being uncomfortable.  But we haven’t had a roommate since…so maybe the hospital is learning that Tiptoe is bad company.  It’s a pleasure having a room to yourself (even if there’s no TV, and no internet, and the lighting is bad, and the chair is uncomfortable, and someone is always wanting to take your blood pressure or shove something uncomfortable into your body). 

The prognosis at this point is as follows:

1) Urine output is good.  So is solid waste.

2) Still draining from the tubes.  It is slowing down, but still significant.  As long as it remains significant, we will stay in the hospital.  So—no date for homecoming yet.

3) Tiptoe’s pain seems to be slacking off little by little.

4) Tiptoe is up and moving around; M and I are learning how to carry her wires, tubes, and sundry medical equipment.

Thanks so much for all your support.

–Scott

28th-Aug-2011 07:49 am - Improving

Originally posted at Thus Sayeth the Lord...

Tiptoe continues to improve. Drainage from around her lungs continues to be significant, but is decreasing. She is peeing more. She also seems more present; she was able to talk with us last night as we watched some movies with her. (‘Tangled’ and ‘Princess and the Frog.’ She liked ‘Tangled’ more– it’s all about the horse, man.)

The hurricane was more like a hurrican’t, at least for DC. It wasn’t a factor in anything, for which we’re grateful.

With the drainage slowing down, they said they were going to move her out of the ICU today. Of course, they said that yesterday, too.

The kids are coming up this afternoon after church; M and I are both looking forward to seeing them.

27th-Aug-2011 05:00 am - One Night in Bangkok

Originally posted at Thus Sayeth the Lord...

Okay, so it was DC, and not Bangkok. I’m running out of creative update titles.

Tiptoe did well last night, according to M. When I left yesterday evening they were concerned about the following things:

1) Urine output was not where it should be, which might have been an indication of kidney stress. After they removed the catheter, she didn’t go pee for hours and hours; they increased her volume (saline solution, potassium bicarbonate, albumin). I’m told that’s no longer a worry.

2) They were going to remove one of the lines connected to her heart. From what I understand, this would have required a visit from a surgeon, even though the procedure is just pulling a plastic tube out of the skin. It was decided that since they’re going to change her bandages today, they’d wait on pulling that out ’til then. I am encouraged that we’re working with such sensible human beings. :)

3) The big concern last night was drainage from the chest tubes. Apparently, there was a lot more than is normal. When she had her Norwood two years ago, she had a problem with chylothorax which kept her in the hospital for an extra two weeks while they tried to resolve it. It’s possible she’s experiencing that again. Drainage slowed down overnight, though, so we’re hoping for the very best.

They told us that they’re hoping to move her out of the cardiac intensive care unit to the normal heart unit today or tomorrow. She’s no longer on any of the drugs (dopamine) that help her heart contract; she’s on oxygen still, but they’ve just put a mask near her face to waft oxygen at her. They also said that they want her to move around a bit today– I think that means *walking*. I’m am all kinds of excited to see my baby girl up and walking.

In other news: HURRICANE? Are you kidding me? The earthquake wasn’t enough? M and I are planning on spending the night in the hospital.

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