Week Thirty-two - Planning More Travel......

Usually at this time of year we make a trip to my Dad's, about four hours away.  This would put us five hours from our secondary center, and nearly eight from our tertiary one.  I hate to break with tradition, but I have to admit to a certain degree of discomfort with that second distance.

We did learn, when we last received a phone call about a potential kidney, that there was a four-hour wait for the matching alone.  In that time, we could be home and packing.  But then we would face an additional three to four hours to get to a hospital.  And quite honestly, I'd really hate to face her surgery already totally exhausted!

Of course, we really only have two choices.  We can continue to live our lives as normally as possible (which we have been trying to do), or we can refuse to leave the house to go in any direction that takes us AWAY from the transplant center. All of the other travel I have done with Babygirl has been more or less toward the transplant center, or at least no further away than where we are now. So now I have to consider a new aspect of this problem.  There are also weather issues to consider.  My dad's house gets tons of snow, usually starting in October.  We have, so far, never been snowed in there on a December visit.  January is much riskier in that regard, and we are likely to go back then as well. And of course, we need to pack enough suppies to do CAPD for two days, maybe with a couple days extra in case of snow.

Sigh.

There is always one more thing to think about, one more thing about our lives that just isn't as simple or carefree as it used to be.

DeeDee

"Spare Quiet Moments........"

In my last post I mentioned using my "spare quiet moments" to focus on the season.  And although I didn't specifically mention it, the last post's title implies that this is for stress management purposes.  Let me clarify that some.

Spiritual focus is not a "stress management technique."  It is, and always has been, simply a part of my day-to-day living.  Take that away, and I do get stressed. So being for so long in a situation where contemplative thinking is about as likely as going to the bathroom alone when you have a two toddlers, I have been stressed. Well, more stressed.  So I went on a hunt for those quiet spare moments, and was amazed at where quite a bunch of them were hanging out - right in front of the dialysis machine.

You see, when someone is setting up the machine, the door is closed so no one comes in without a mask on to contaminate the process.  And while parts of the procedure are delicate and require concentration, there's a lot of this:

Push a button.  The screen comes on eventually and says, "Welcome to your treatment."

The machine contemplates its navel for five minutes, during which time you pull out a 22 pound box of dialysis fluid, pick off the tape (NO SHARP OBJECTS per the dialysis team), and grab a wrapped cassette, pushing the odd button on the machine when it asks if the preset settings are okay ("Reject") and asking you to confirm the custom settings ("Okay!).  There is also time during this to fit in a full two minute hand wash, mask in place.

Two minutes is a long time to stand in front of a mirror washing your hands.  "Happy Birthday" takes thirty seconds.  The Alphabet song, about a minute.  But here is one of those lovely places where I can be contemplative.  The average Christmas carol far exceeds two minutes.  And I love to sing.

Once back in the room, the cassette is inserted, and you have to pull those eleven pound bags out, carefully ripping the plastic covering from each to expose the connection tubes.  The next screen advises:  "Connect bags to supply tubes and set up drain tube."  It doesn't take long, and then the machine goes into its own contemplation, all the while making various noises.  My favorite is the one that sounds like the doorbell on The Munsters.

The machine counts available fluid bags, flushes all the lines, and primes the patient tube, all with anywhere from one to three minute segments where I sit and wait.  And wait.  And wait.  The entire process takes about 15 minutes, and I need to be truly focused only on the machine for about 2 of those. And this is a nightly event, done solo, without even Babygirl in the room.  We go through a similar process in the morning, but it takes far less time and is far less complex (and the final screen is annoying:  "Have a nice day!").

So there I have it - a built-in no-escape time when I can take the hamster off the wheel in my brain, slow down, and remember why I'm here, and what all this is for.

I'll take it

DeeDee

Moving On To The Next Holiday.......Stress Management Part 218

I love Christmas.  I have to admit I go spectacularly overboard every year.  It's not, for me, about doing the Martha Stewart, although my home looks very seasonal (or will at the end of next weekend). We have ornaments from my Grandma on down.  We have handmade kid decorations.  We have lights, and candles.  I even go around my office hallways wrapping all the pictures and diplomas to look like enormous presents hanging on the walls (an idea I confess I stole from a Perkins Pancake House thirty or more years ago). But I admit to going seriously insane about presents.

So the idea of doing all of this on a much more restricted budget than I am accustomed to is, well, challenging.  I am a bit ashamed to even put this into words when so many of my neighbors and friends have been made homeless (or at least decoration-less) by recent storms and flooding.  It's like the people who are going to have to let the maid go because of a salary drop - it's hard to work up any sympathy for anybody but the maid.

But I have already warned the kids that we aren't getting as much as usual.  And I am looking at ways to tightly stick to the budget I've set.  My husband and I already attended the local publisher's booksale and got a lot of excellent gifts there for very little.  All of the kids except Babygirl are adults now anyway. And everybody is always happy when their stocking is full of food.

But the season isn't about all of that, and I easily forget.  I get giving mixed up with loving.  I get receiving confused with being loved. And I forget what it's all for.

It's for making a warm place where people feel welcome.  It's for remembering family.  It's for enjoying a homemade eggnog with people who get funnier the more eggnog you drink.  It's about being with people who aren't bored when you tell the story of the traditional Christmas Tree Hunt of your childhood. Again.

And it's about remembering the One whose birth gave us good tidings of great joy. 

So this season my "mindfullness" will be aimed at this:  in my spare quiet moments, I will remember that Baby.  And I will remember.

DeeDee

Week Thirty-one........Thanksgiving.....

I'd be supremely ungrateful to neglect Thanksgiving.  Home, family, friends, church, work - all gifts that I wouldn't ignore or minimize for anything.  Grateful for a house full of family and friends, who at dinner expressed thanks for many things:  Being employed again.  Having a place to stay despite their flood-damaged homes.  The birth of a new child.  Horses. 

Right now my house is full of young adults drinking wine and playing a viscious card game.  I'm glad they choose here to gather!

We truly lack for nothing except a kidney.  And we are doing well without it for the time being, thanks be to God.  I couldn't even find something I wanted to run out for on Black Friday!

I am especially grateful that my own health is improving.  It's been almost a year to the day since I got sick, and although I am not yet back to full-time work, I am gaining ground.  Hubby's new job is getting him in better shape also, which will improve his health too.

I read on Facebook the other day:  "It's not happy people who are thankful.  It's thankful people who are happy." 

So I am thankful.

DeeDee

Week Thirty - Conflicting Obligations......

So far I think I've done pretty well juggling all the things I need to juggle.  I had to drop out of a few things (directing church choir hurt the most) and say no to a few more.  I still manage to get to Bible study a couple of times a month at least, and am making a concerted effort to get back on board with my exercise program.  And I must say that the family has been, generally, uncomplaining. But after half a year of hearing about what Babygirl needs, it must be getting tiring.  And this morning it occurred to me that I may end up running into a major conflict of interest soon. 

My eighteen year old, my Curlygirl, is having a baby.  I think it's the coolest thing in the world (although she disagrees!) that she is due on February 29th.  She has been doing okay with the pregnancy, but her asthma is kicking her hard.  And she's tiny, barely five feet tall, and very narrow-hipped, so I've been thinking that a C-section may be in the works for her.  And I plan on being there for her no matter what. 

Except.....

What if THAT's the week we get a kidney and are trapped in a hospital four hours away?  I mean, I know I shouldn't borrow trouble.  But I also have a sinking feeling that my life is just refusing to go the way any normal life should go. Yes, I know the wait is three to five years, but we've already had TWO offers, so it's not impossible to imagine that we won't wait that long. 

I think I need to talk to both of them about it.  This one "what if" probably needs to be covered in advance, however unlikely it may be.  But how do you choose between two such enormous needs?  How do you decide whose disaster you would rather be present for, should one occur? How do you explore the feelings of a child who has every reason to fear another surgery, and compare them to those of a young adult who has already had far too much experience with the sensation of maternal abandonment?

In a way, I think even I am tired of always putting Babygirl first.  Curlygirl needs me just as much, and maybe more for this one time in her life.  Ugh.

DeeDee

Mission Work Can Make You Sick......

Well, turns out that my desire to protect has SOME basis in reality.  However, it wasn't quite what I was expecting.

Babygirl didn't really talk too much about her experience in the cleanup.  She told me they worked in a cornfield, and that they found a doghouse left by the flooding.

What she failed to tell me was that they found more.  A LOT more.  Doll houses.  A teddy bear.  Someones entire front porch.  Kitchen goods. Christmas decorations.  A ton of lost memories and sadness strewn across a cornfield, interfering with the farmers' machines and making what little harvest remained impossible.  The kids worked for hours, staying at least two hours longer than they had planned because the kids were not willing to give up.

The other thing our baby failed to share was that the stench of the waste in the field actually made her vomit. A few times.  Near as I can tell it was a small pile of dead animals (mice and the like) that did her in.  They made her stop for a bit, but she took a break and went back to work. 

I've done mission work, and I know how bad the smells can be. And actually she's not the first of my kids to gack while doing this kind of work.  But she's the baby.  And she's the youngest to do this - the rest have been at least fourteen. And as I have frequently pointed out, she  is young for her age.  Or she was, once.

As this six months has gone on, she has grown up.  I'm not surprised, I suppose.  She's had a lot to deal with, and she's at that pivotal age where many kids suddenly become adolescents.  But it's more with her. She's had to talk about surgery and death, transplantation from both the living and the dead.  She's had to give up chocolate and sleepovers, gym class and popcorn.  And so she has grown up.  More than I expected, and better than I hoped.

But I still feel guilty.

DeeDee

Raising a Well-rounded Child......

One of the supreme challenges of raising a very ill child is making sure that you let them know that although they are "special," they are still "normal."  I really don't want to end up with a self-centered monster who thinks we should drop everything everytime she "needs" us.  Balancing that against my instinctive desire to protect her from all possible harm is difficult for me.

So Babygirl has chores.  Empty the dishwasher daily, or more as  needed.  Clean one bathroom, and do it well. Clean her room weekly.  Believe it or not, that last is a totally new demand of mine.  I've never cared if the kids' rooms were messy - that's what doors are for.   But since Babygirl is going to need to live in a VERY clean environment after the transplant I figured we'd start keeping it up when she moved to the new room.

But this weekend the church youth group had a special project.  They were joining together with other youth to do some flood relief a couple of hours away. 

You see, there is almost no area in this state from here east that didn't suffer terribly during the recent tropical storms.  Towns flooded, roads and bridges still out, thousands still homeless, and farms literally washed off the map.  And any field flooded with contaminated water (which, near as I can tell, was ALL of it!) can't be harvested.

Now.  Let's think this through.  Sick kid.  Contaminated water.  Good idea?  And to do this she has to miss a night of dialysis, and switch to a day run.  But she wants to go.  I'm sure it's not that she has a burning desire, at the age of twelve, to help the helpless,  I'm sure it's that she wants to spend time with her friends.  But I also WANT her to go, to see more personally the devastation of peoples' lives and to develop a personal desire to help.  I want her to have that balance. 

If she had already had the transplant this would actually be out of the question because of the antirejection drugs.  And unlike each of my older children, I will likely be unable to take her on a mission trip with the Appalachia Service Project because by the time she's old enough, she will (pray God) have had that transplant, and it will be to dangerous for her to go.  But right now her immune system is fine.  And so.....she went.  She spent her day helping to clean a cornfield, and is suitably impressed by the size of the project.  And I am hoping that it will make her realize that as tough as her life is, other people have some tough times also.

As I've said before, if we don't throw her a pity party she won't know she needs one.  Turns out it's easier said than done, but I do my best to pull off the cotton wool and let her go.

DeeDee

Week Twenty-nine.....Taking It On the Road.....

This past weekend Babygirl and I took a road trip to New York City to visit her big sister.  It's about a four hour drive one way.  The purpose of the visit was to take Big Sis some furniture, since her first "Big Girl" job hasn't yielded a paycheck yet, and she's tired of sitting on the floor to watch TV!  So a good friend donated a couch, and we loaded up a bookshelf with it in the back of the big van and off we went.

Now in order to do this type of thing we have to plan a bit.  We try really hard to be compliant with our baby's medical care.  After all, if we aren't compliant, they'll refuse to give her a new kidney - no point in giving them to people who can't or won't follow directions!  The dialysis machine is pretty fragile, not to mention that it's surprisingly heavy for its size, so I have no desire to take it along anywhere.  So that takes us back to manual gravity dialysis, more commonly known as Continuous Ambulatory Peritoneal Dialysis (CAPD).

CAPD can be done a couple of different ways, but as the title suggests, it is meant to be done while the patient is up and about, and it is supposed to run all the time.  In our case, we use an IV pole with a scale attached to measure 1200 cc's of fluid into Babygirl's PD catheter.  Once the fluid is in, she gets disconnected from the pole and bag and can go whereever she wants and do whatever she wants.  After an hour and a half she comes back, gets hooked up to drain out THAT fluid, fresh fluid is put in, and we repeat the cycle five or six times.  This adds up to a lot of time!  The dialysis machine does exactly the same thing, but it does it automatically while she sleeps.

So for this road trip, I filled her up with fluid while we were packing.  She was due for her next exchange 45 minutes after we hit the road, so we pulled off into a truck stop.  We have a big van, usually 8 passenger (could be 11) but right now all the benches are out so we can transport the couch.  but hey! couches are comfy, so we set up shop in the back of the van.  Up goes the IV pole, out comes the dialysis fluid exchange system.  And THAT's when I realized that I forgot ONE little detail. 

The dialysis machine has a warmer.  The five liter bags that we use with the machine are heated to body temperature automatically, and pretty efficiently.  I'm supposed to heat travel bags before I go, using ordinary heating pads (which are incredibly INefficient) and store them in an insulated bag to keep them warm. And I forgot.  Now it's not actually harmful to use cool fluid any more than it is harmful to drink ice water.  But it is, according to Babygirl, uncomfortable. We learned THAT on our last road trip.  So I felt pretty bad about forgetting, especially since we were committed to doing six exchanges!  Well, no going back now!  Let's do it.

God bless Babygirl.  She dealt with the cold fluid with good grace and a hot drink from the truck stop.  But do you remember me mentioning her practical common sense?  "Mom, can we put the next bag near the heater back there?"  Well, DUH.  Of course we can.  Actually, I put the next two bags in front of the heat vent, packed my coat over them, and by the time we were due for another exchange they were nice and warm! 

I'm not sure, but I don't think many people manage four exchanges on one road trip, each in a different state each time.  Oh, and by the way - you get some interesting double-takes from people when the look into your lighted van and see a kid hooked to an IV pole.

DeeDee

The Aftermath.......

Since our false alarm phone call last Saturday, hubby and I have been dealing with the letdown.  But for each of us there is a new layer of "dealing."  I'm not sure why, exactly.  And I know it's different for both of us, and neither of us can really articulate it very well.

I haven't slept since Saturday, except for Tuesday night when I took a Benedryl.  Since I don't work Wednesdays I figured I could deal with the hangover that sedatives always leave me.  And the added bonus of the Benedryl was that is took away the hives I developed for no apparent reason.  My scalp was itching so badly I had the office nurses checking me for head lice.  I lie awake mostly, dozing sometimes, and see the time pass in minutes or hours on my alarm clock.  And then I oversleep.  And hubby has disappeared from bed several times to go to the Man Cave to watch TV or play a game, only to come back to bed a couple of hours later.

I've never really been an insomniac.  Medical residency trains you to fall asleep quickly whenever the opportunity presents itself.  So why won't the hamster wheels inside my brain stop running?

I can't say I feel disappointed - that is far too simple a term. Let down, like some people feel if their spouse forgets an anniversary.  It's almost like I felt the year my husband was in the hospital and there was nothing in my stocking for Christmas - empty somehow.  Unnoticed.  Un-cared for.

So who, exactly, has let me down, failed to notice or care?  I would like to be able to say that my faith is stable enough to take what is, in the grand scheme of things, a momentary disappointment.  I am back, in a way, to yelling at God about how much I love Babygirl, how important and special she is, how much she MATTERS - as if she doesn't matter just as much to God.  And in my deepest heart, I know "All is well, and all is well, and all manner of things shall be well." 

But I want Babygirl to be well.  And I want it NOW.

DeeDee