Tuesday, August 30, 2011

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."


Sunday, August 28, 2011


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.


Friday, August 26, 2011

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.


Thursday, August 25, 2011


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?


Tuesday, August 23, 2011

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.


Monday, August 22, 2011

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.


Saturday, August 20, 2011

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.


Wednesday, August 17, 2011

Letter to God

Part of getting ready for this whole ordeal was moving our baby to a bigger bedroom.  We got the room ready, and spent all of Sunday moving her stuff from one room to another.  I wouldn't let her just move stuff - I made her examine everything to decide if she really wanted to keep it.  She filled 5 trash bags with contributions for the local rummage sale, filled 2 recycling bins with old school papers and posters, and still had stuff leftover for the trash collectors.  In the end, she made some very mature decisions about what was really worth keeping, and we'll have a much easier time keeping the room clean without all her packrat clutter.

This morning I did the final sweep out. You know, the Barbie shoes, the loose beads, the broken crayons, all left behind because someone has gotten to old for all of those things.  She's my last little girl, and I admit I'm going to miss the little girlie things.

But among the things left behind I found a letter.  It was neatly folded in the shape of an envelope.  It read:


Dear God,

What's up?  Thank you for everything you've given me.  Tell mom Hi and I love her.  And please let me get a Kindle.


PS Love you too.

"Thank you."  For everything.  Hi to the mom I'll likely never see, in Guatemala. I don't think I have half that gratitude and grace.  She wrote this after 3 months of regular doctors appointments, blood tests, ER visits and stress.  And all she wants back is a Kindle LOL.

I didn't see this before her surgery.  But we bought her a Nook right before we went.  I guess God was listening pretty well.


Week Seventeen - The First Surgery

Monday morning we got up before 5 AM to leave for the local center to have the dialysis port inserted.  The general idea of the proceedure is to install a catheter into the peritoneum.  This is done laparoscopically, through the belly button and 2 other small incisions.  The tube is then tunneled through the abdomenal muscles into the layer between the muscles and the skin, exiting opposite the belly button on the left side. The most painful part of this is recovering from the discomfort of making that tunnel.  Or so I thought.

In the preop area we ran into the first of the "right-hand-doesn't-know-what-the-left-is-doing" mentality that we have come to expect from our team at this center.  None of the labs drawn at the big center had made their way to the surgeons, even though we had specifically asked out local people to make sure they did.  I, of course, had the results memorized, but no self-respecting anaestesiologist would take such things for granted, so we were held up a bit while they ran some STAT blood work.  Thankfully they got the blood when they inserted the IV, so no second stick was needed.  Other than that, everything ran  on time and as expected, and Babygirl doesn't remember a thing about it all.

We were taken to a lovely pediatric ward, actually in a separate (but connected) hospital. To be as kind as possible, the nurses were attentive and kind, although not ONE of them appeared to have read her chart.  No one knew what meds she was on - we were asked over and over and over again about the dosages of some of them.  We had words with the doctor about the plan for immediate dialysis, an how uncomfortable we were with proceeding without letting the tube heal into place.  He, and the residents all hammered home that if we DIDN'T do this, the tube might block up as part of the healing process.  They were VERY convincing - at one point my husband looked at me and said, "Are you sure you aren't just being stubborn?"  Now, that might sound unkind, but I AM stubborn, and sometimes I need talking down from an unreasonable stance on things, and he was trying to see what was going on in my head.  But at some point, the fight goes out of you.  The kid is already suffering, you've been up since before dawn, and a united front of experts in a field you know nothing about is facing you down.

So okay.  Start it.  But I'm watching, and I still think it's a bad idea.

They were supposed to start around 1 o'clock, which would have finished at 9 and given us the night off.  It took until 9 to get set up and started (right-hand/left-hand syndrome).  The basic principle is this:  you use a machine pump to put clear fluid into the kid's belly via the port. They used a low volume, 500 cc's (about 2 cans of sprite in volume).  It takes about 10 minutes to pump in the fluid.  The fluid sits in the belly, osmotically pulling toxins from the bloodstream.  Half an hour later, the machine sucks the fluid out into a waste bag.  And THERE is where we ran into some little problems.

Putting the fluid in feels weird and is uncomfortable.  No problem just letting it sit there.  But pumping it out caused our baby SEVERE pain.  SCREAMING pain.  During the day before the dialysis started, she got IV morpine about every 5 hours and was comfortable.  During the night she got it every 2, with rescue doses as needed, and was crying every time the drain cycle came on.  And to make it worse, the drain cycle wasn't able to drain out all of the fluid so it took 4 times longer than it should. And it cycles like this EIGHT times. And, frighteningly, the dialysis fluid started to leak through her skin around the catheter - a sure sign that we DO have a potential germ highway from inside to out.

Finally it was done.  We all collapsed and slept a little.  And then they said to start again at noon, finish at 6, and then go home.  She was clearly very comfortable at that point, but hubby and I KNEW this wasn't going to go well.  I looked at them and said, "ONE cycle, to keep the catheter open.  And if it hurts I am pulling the plug on the damned machine and walking out." 

Holy God.  As bad as it hurt the first time, it was a thousand times worse the second.  Some genius switched her to oral pain meds right before they started after telling us that they would keep the IV morpine going for the duration of the dialysis.  And that first cycle WOULD NOT drain.  The screaming lasted for well over an hour.  If I had had any idea of whether it was safe or not to leave that fluid in there I WOULD have pulled the plug.  And when most of the fluid was out, I refused further treatment.  We were home a little after dinnertime, with dialysis fluid still leaking out of her skin.

Lord.  Please.

And we have dialysis training next week.


Tuesday, August 16, 2011

Week Sixteen - The Beach

We left for the beach one day after our consultation at the big center.  I was hoping for some rest, relaxation, and oblivion.  It's not that you can ever forget your kid is sick - there are all the dietary restrictions and meds to remind you - but there is always the hope that the joy of the week will recharge your soul a little before you have to face the reality of it all.

And to some extent, it did.  The daily sunrise dolphin show (which I confess I only saw twice), the fellowship of family, the laughter of kids.  The perfect weather.  My lovely, even tan (despite SPF 30).

But every time I felt like I had managed to relax......

Monday afternoon I got a call from the local nephrologists office reminding me of Babygirl's upcoming surgery, and the following surprising news: "I know you're on vacation, but did you know you'll have to start dialysis training one week after the surgery? You'll be at the dialysis center for two days, possibly as much as five days."  Are you serious????  You KNOW I'm on vacation and you failed to inform me of this BEFORE I went?

Tuesday morning I phoned my office to have them juggle my schedule.  Again.

Wednesday afternoon I got a call from the dialysis center.  They wanted to know what would be a good day to have all our dialysis supplies delivered to the house.  And they informed me that my baby would likely be in the hospital for a week, starting her dialysis immediately after having the dialysis tube inserted.  We were told by the surgeon that the tube needed to HEAL for two or more weeks first!  The "dialysis training" would actually be practicing dialysis on our daughter, when I thought we had the rest of the summer to prepare for this.  I got this phone call while I was sitting on the boardwalk with my mom.  I cried for over an hour, in front of God knows how many total strangers, using my beach wrap to mop up with. I can't recall ever being so utterly wretched.

Thursday I called the new nephrologist in the big center.  He didn't call me back.

Friday I called again.  Twice.  I got him at nearly five, and told him the whole story.  He told me that there was no medical need to start her dialysis so emergently that the tube couldn't heal, but that neprologists probably divided about 50/50 on how soon to start once the tube was in.

I think I'm in HIS 50.  This tube goes from the outside into the peritoneum - a rapid transit route for bacterial peritonitis if we aren't extraordinarily careful.  I'd rather be careful.


Sunday, August 14, 2011

Week Fifteen - A Second Opinion......

We went for our first visit to the center 3 hours from home.  The appointment was scheduled for Thursday, and we were leaving for the beach Friday, so I drove Wednesday evening through the worst rainstorm I can ever remember driving through to stay with my sister-in-law, planning to have hubby and the rest of the family meet us on Friday.

Babygirl and I caught the train from there on Thursday morning.  It took longer than I remembered - nearly an hour! But I have to say that everyone we ran into - train employees, strangers, and hospital employees on the same train (including one who all but took us by the hand and showed us where to go out of the train station, leading us through an underground shortcut the employees take to work!) - was exceptionally polite and helpful to us.  I guess when you look confused with a cute kid and are looking for a large tertiary kid's hospital, people look at the kid, thinking heaven knows what about what might be wrong with her, and are especially kind.

The transplant team was wonderful, and I like the nephrologist very much.  He was quick, noticed a few things about my little one that the other doc didn't comment on but that I had considered ("Why is she so TALL? Most people from her country are very small, and most kids with renal failure are even smaller!).  He's requesting her growth records from the family doc, and may end up asking for an endocrine consultation.

The hospital itself is awesome.  Each kids' room has some gaming system, an in-house TV network and cable.  Each floor has an employee whose job is to entertain kids (DANG.). Each room (including ICU!) has parent sleeping arrangements for one parent, and the hospital has sleep rooms (double bed, lamp, alarm clock, phone) for parents as well.

I have no idea what the local people offer.  It didn't occur to me to ask, and they didn't volunteer any information, although after what I saw and heard at the distant hospital, I couldn't help but wonder why not?  After all, if this place deals with kids, don't they have a plan?  And they do deal with a lot of kids.  The have pediatric neurology, GI, surgery, pulmonology, and more.

So.  She is listed at the new center also.  At least, provisionally - marking time but not on the national list at that location until I can get them a copy of her dental records (also wanted by the local people) and most recent eye exam (not requested by the local folks).

And this is where we REALLY want to go.


Monday, August 1, 2011

Ongoing stress management......

I have reached a point where my "to do" list has a "to do" list.  There are so many balls juggling around in my head that I dread trying to catch one more.  Sometimes I refer to a lapse in care to some detail as "the sound of balls dropping."

Some of those balls?  My 17 yo is pregnant. I failed to inform her 2 older sisters before she posted it on facebook.  I haven't called my dad - he finally called me last night to see if I was alive.  My cousin's wife died last month and I still need to send a card. I have managed to keep up with paying mom's bills, but she is feeling lonely and left out because I don't call her, and as a consequence she lost track of her medications, and stopped filling her pill sorter.  And my older girls feel the same - out of the loop and isolated.  But on the up side, I managed to make in time to be there for the delivery of my grandaughter on last Monday afternoon.

Right now my mom is in the ER, and my brother is handling that so I can stay at work. And babygirl and I have to be at a hospital 3 hours away on Thursday morning, no way out of it, so if mom is admitted....

I quite honestly don't know of any stress management tool that would help much right now.  I do put the beach web cam on and go there in my head as much as I can.  And some of the good advice I got from my therapist?  Try wording my "to do"s differently.

I NEED to pack for the beach because......we are leaving soon!  I have so little time left!
Or:  I WANT to pack for the beach because.....I will be able to relax when we get there!

I NEED to update the house calendar because.....there is just so much to do!  And I can't forget!
Or:  I WANT to update the house calendar because....I need everyone to know where I am, and to have an opportunity to help out.

I am working on this. I am also working on enjoying my evening glass of wine and a kiss from my husband, instead of just throwing it in while I am trying to prepare dinner or catching a hug on the run.  Living a bit more in the moment instead of in some dread and unseeable future.  Listening to my little girl laugh.  Watching my grandaughter take her first breath, and her awed father gently stroke her cheek. Singing in church on Sunday and watching someone wipe a tear, moved by the music (at least I HOPE that was why LOL!).

I was driving in the car the other day, stressing myself to death as usual.  I turned on the radio and heard, "It's not getting what you want, it's wanting what you've got!  I'm gonna soak up the sun.....gonna tell everyone to lighten up!"  I truly laughed out loud.  Sometimes God is not subtle, and it's a good thing.