Optimism with a Capital O......

I have always been an optimist.  Hubby frequently refers to me as Pollyanna (and I call him Eeyore LOL).  One of my guilty pleasures is actually a subscription to O magazine.  Yes, a subscription, not just covert readings in doctors offices (although I confess that that was where I caught the bug).  Now, given my work schedule, you have to realize that I may be the last person in America to have never actually watched The Oprah Winfrey Show (nor Dr. Oz), but I have, since "The Color Purple" come to admire her spirit and her life. And I SO relate to that big wagon full of fat that keeps coming and going!

This morning I had a moment to read, and I caught "In Praise of Rose-Colored Glasses" by Martha Beck.  http://www.oprah.com/spirit/Reduce-Your-Suffering-How-to-Have-a-Positive-Outlook-On-Life

She quotes poet Jack Gilbert:  "We must have the stubbornness to accept our gladness in the ruthless furnace of this world."

Well.  Wow.  I think that quote alone is going to keep me pondering for a while.  It actually fits my life philosophy very well, which up until now I might have been summarized:  "Life stinks but you can still laugh at it." Or some ruder version thereof that may have also included laughing at other people (oops). 

There is a section of the article outlining the idea that it only takes 90 seconds to process the initial stress of a negative feeling.  Not that those feelings don't return, they do, but if you let it flow, ride it out, and let it go, it's gone.  Again, something that I inherently FEEL.  I do much better when I have time to process things for a minute, or ninety seconds if you insist.  I am that person who has cloudbursts of emotion: A moment of temper, a storm of weeping, a burst of exuberance.  Now that we don't have tragedy upon hysteria based on yet more bad news (for at least one week at least) pouring out of our world's "furnace", I am feeling more balanced.  And now, I want to go back to stubbornly accepting gladness. I want Pollyanna back, and I think I can key in on finding her most of the time.

It's really all already in the Bible : "Weeping may endure for a night, but joy comes in the morning."

DeeDee

Hurricanes.......

We are in the midst of surviving Hurricane Ilene.  Oh, not to worry - we are many miles away from the ocean and the nearest river would have to rise to Armaggedon proportions to hit us.  There are flash floods all around us, and some water in the basement, but overall we will be fine.

But suddenly, we have to be concerned about power outages.  Currently 6,000 people in our county are without power.  Well, heck. it's summer, not too cold, and we can manage with candles and such if we need to.  Or we could, last week.  THIS week we have to figure out what we would do with Babygirl's dialysis machine. If the power goes out during a treatment, it locks down.  If we were without power for more than a night we'd have to go to gravity fed dialysis, for which I think we have all the equipment (although hubby says we are missing one piece).  But hey, the classes were already a few days ago, and they handled that subject on the very first day. 

Oh my goodness.  I have to sharpen up a little, which is tough to do on so little sleep.

I'm off to bed.

DeeDee

Survival Mode.......

I find myself thinking back to medical residency.  I was, of course, 30-odd years younger than I am now.  But it bears some similarities to our present situation.  The hours are terrible, the stress ungodly, the pay stinks, and you are very likely to fall asleep behind the wheel of your car. 

I drew the first night shift, hubby and I figuring that we would trade off.  Babygirl slept an hour, awoke to the drain suction, I bypassed the drain suction, rinse, repeat.  Eight times.  Well, to be honest, she actually slept through two of the drain cycles - at least I think so, because I know I did. I don't know HOW I did, when I could feel every bar of the futon frame pressing into my hip bones. The last cycle finished at 5 AM.  If I had been more alert, I could have left her hooked up and gone back to sleep, but I unhooked her (a 5-10 minute process involving hand sanitization an face masks), weighed her, checked her blood pressure, temperature and pulse, and let HER go back to sleep.  Since I was up anyway, I walked the dog and went to work out before work.

So I arrived on the job with MUCH more sleep than the average medical resident - I must have slept a total of 5 hours!  Of course, the fact that they weren't actually CONSECUTIVE hours?  No problem! Life or death decisions all day?  No sweat!

So now hubby is upstairs. Babygirl cried like I was abandoning her when I left her with her dad.  Serves her right, the little traitor - she told the social worker that Daddy was "the fun one."  HA.  I guess I may not be the fun one, but I'm still the Mom LOL. 

I am totally punch drunk.

Lord, we need that kidney.

DeeDee

Certified.....

Both hubby and I are now officially certified for home dialysis.  I went 3 days, he 4, and Babygirl daily for all, since we got to do all of our practicing on her.  We accomplished several things.

Most important, our daughter has begun to distinguish the fear of pain from the pain itself.  This is important.  Extremely important.  And she has been given some sense of control over the entire process.  I cannot thank the dialysis team enough for this.

Second, hubby and I have also been given back a sense of control.  They have listened to everything from scheduling issues ("Do we HAVE to bring her back on the very first day of middle school???") to concerns about our competency to handle all of this at home.

Third, they made us clean our house.  Due to painting and shifting for our daughter's new room, the rest of the house got, well, um, disgusting.  Yesterday, at the end of our day, the nurse told us that she and the social worker would be following hubby home the next day to inspect Babygirls room - you  know, check out the electric supply and make sure we were ready to go.

Well.  I know from our adoption social workers that they know we are going to freak out and clean, so on top of 8 hours of driving and dialysis training, we took the whole house apart, taking time to grill a couple of steaks and steam some broccoli, since they are concerned about her protein intake.  But as one of our adoption social workers told me, "You can't fix filthy in 24 hours."  She was, of course, correct.  And we aren't filthy.  But the road in front of our house is under construction and every time I wipe anything with a damp cloth I get mud!  So hubby and I and Babygirl and nephew (well, him a little anyway) went to work.  And worked and worked.

So today, I am exhausted.  I had to work.  Hubby had to do the last day of training alone, and deal with the home visit, which went well.

We bought KFC for dinner.  Sometimes it's all you can do.  Coleslaw is a veggie, right?


DeeDee

Week Eighteen - the first day of dialysis.......

This was our second day of training.  We had promised Babygirl that we wouldn't do anything the first day, but the change in her labs was dire enough that even I felt that waiting any longer would be detrimental to her.  So we jumped in, like it or not.

The nurse at the dialysis center is apparently working only with our baby this week.  We are, to say the least, unacustomed to such personal care at this institution. She listened to all of our concerns yesterday, and all of our complaints as well, and took them seriously.  She had spoken to the nephrologist and arranged for the first pass of dialysis on a gravity system, without the machine.  We need to learn how to do this anyway in case of power outages.  In a world where I usually think of every contingency, it never occured to me to worry about THAT beyond contacting out power company to let them know we need power more than other people do in an emergency.

Our little one tolerated the gravity dialysis pretty well, and wanted to convince the nurse that she could manage just that at home.  The nurse explained to her that it would mean going to school with all the fluid in her belly - not a comfortable thing, not to mention that the larger volumes of fluid would make my thin child look pregnant.

We moved on to one pass of the machine-managed dialysis.  While it did cause a little pain at the end of the drain cycle, we were taught ways to override this, and Babygirl was taught how to stop the flow of fluid, so she feels a little more in control.  Will be starting to use the machine at night at home by the end of the week.  We do have permission to skip dialysis so we can go camping for Labor Day weekend.

Oh, and another minor detail.  Babygirl was offered a kidney yesterday.  Holy crap!  But the new nephrologist felt it wasn't a good match.  Blood type and tissue okay, health of the donor? Not so much. He said that if our child were in more desperate straits he'd have gone for it, but she can wait for a better kidney.  My eyebrows are still stuck someplace under my bangs LOL.  At least we know she is moving up the list.

Overall, it wasn't a horrible experience.  But I confess that the daily drive to the dialysis center is already old, and it's only Tuesday, right?  Dang.

DeeDee

Out of choices......

We got the lab reports from last week.  Babygirl's kidneys are functioning so poorly that we are really out of choices.  We kept our promise to her, and did not start dialysis today, but we really MUST start tomorrow.  She is horribly frightened, and has already cried herself to sleep twice over.

At one point while I was holding her, and she was sobbing, I realized that her breath smelled like "old man" urine, stale and disgusting.  There are no words.

DeeDee

The new room

We finally finished!  The paint, the floorboards, the move, the sorting, the arranging and the poster hanging.  The last detail was a HUGE red and white lower case initial from her first name.  I was walking the dog, came across a garage sale, and there it was - two feet tall, bright red with white trim.  I think it may have been part of a restaurant sign - it is clear red plastic that glows beautifully if there is light behind it.  It was digustingly dirty but cleaned up well and looks awesome against one of the white walls in her red-and-white room. And I paid a quarter for it LOL.

Finding room for all of the dialysis supplies was a challenge. We had an entire closet set aside for these, but it wasn't enough.  We are also using all of the space under her bed. 

We discovered that she won't be able to use the top bunk if she's on the dialysis machine (one of those incredibly weird details that just wouldn't occur to you!).  Since it's a bunk/futon combo, and she wants to keep the futon up as a couch, we took the bunk down, rearranged the room AGAIN, and got things all ready.  It's actually a good thing, since a top bunk has lots of room underneath it when it's on the ground.

So.....we're as ready as we can be. Which is to say, we aren't ready. Not at all.

DeeDee