Curing Migraine....

Two years ago when my migraines suddenly took over my life, I got a LOT of suggestions for things that would improve the situation.  Now that Babygirl is riding in the same boat (I HOPE it's the same boat - I really don't want anything worse than migraine!) I am getting a ton more.

I'll do my best to cover some ground here. 

First, I DO believe in massage, manipulation, chiropractic care and so on.  I have had manipulations done while I was having migraines.  It worked beautifully.  But it didn't stop the headaches from coming back, and it is not a skill a lot of people have.  Massage is wonderful, but for me it tends to accentuate an active headache, and it's difficult for me to assess whether it decreases frequency. 

With Babygirl, treatments that involve having someone touch her are difficult.  As a toddler we discovered that she as some Sensory Integration Dysfunction.  She was extremely sensitive to clothing, shoes, socks and so on.  I think her current love of skinny jeans stems from the fact that they apply even pressure from her waist to her ankles, no tickly flapping material.  She wears fairly tight camisoles under her tops, and I think for the same reason.  She is so severely ticklish that CHOP anaesthesia has made note of it.  She requires extra sedatives for procedures because touching her belly makes her pull up her knees and giggle, even when heavily sedated.  She HATES back rubs, pedicures and shampoos at the hair salon.  However effective these treatments might be for her, she cannot, oddly, tolerate them.

Various herbs and natural products have been suggested.  Because her anti-rejection medications have many, many interactions with other drugs (and potentially with food, IE grapefruit, and herbs) we have been advised to not allow her to use them.  Topical peppermint oil seems to make her worse, while it seems to make me feel better.

Someone suggested sports drinks like Gatorade to help increase potassium.  Usually her diet is fairly potassium-rich, and her blood tests always show her potassium levels to be at the higher end of normal.  But we are also forbidden to use sports drinks.  The salt/sugar/potassium combo is not at all good for people with kidney disease.  It is true that hydrating her helps the headaches get better.  We use water, dilute iced tea (wouldn't be my first choice but it is hers), and low-salt chicken or beef broth. 

As for the list of suggested "It might not be migraine ask the doctors about this instead" idea, I have made a list.  I have, banging around inside my head, my own paranoid and worrisome list.  Frankly, it's times like these when it truly, truly stinks to be a doctor. 

There's a saying in medicine: "When you hear the sound of thundering hooves, you should picture horses, not zebras."  For example, a patient in my office who is coughing is far more likely to have asthma than a lung parasite.  That being said, I've had the patient with the lung parasite.  Zebras seem to rampage through my office, and we aren't surprised anymore by the occasional pygmy hippopotamus. 

My head is full of zebras, a few Tommy gazelles and a river full of hippopotami.  Babygirl already possesses one zebra disease.  This time I want a horse.  Migraine would work for me.  That, at least, won't endanger her life any further than the zebra she's already riding.

DeeDee

Sometimes a Day is Enough.......

The craziness of the holiday season is behind us.  The decorations are down.  The days are beginning to lengthen, and the cold will likely settle in soon. But our lives here don't really slow down.  We continue construction, dealing with dust and clutter.  Medical needs still take a lot of time and effort.  And taking time to just enjoy life instead of flying through it is still a challenge.

Yesterday was Curlygirl's baby shower.  She did a lot of the housework preparation, I did the planning for food and games.  But what made it the most fun of all was the support of family and friends.  A co-worker came early to help out, and cut and colored my hair in the process.  My sister-in-law, niece and nephew came about 10 AM and dove right into the fray as well. 

I have to brag about my niece and nephew.  They are kind, loving, funny.  Sarcastic, clever, playful.  And they walk into total chaos, pass out warm hugs, and look around and say, "What can I do to help?"  Every teenager on earth should be so kind!  There is real healing in the love of family, and in the support of friends. 

The shower was fun, food was plentiful, silly games well-received.  Curlygirl got some very nice gifts, including a carseat that I think will hold little Squeaker until he's about twenty.

And when the party was over, extra family was still there.  Dinner, drinks, laughter. Christmas gifts exchanged and appreciated.  And although they had to leave this morning, it seemed like a longer time.  Like a clear, joyous window, sunny and bright, after weeks of mostly cloudy weather.

I'd like to spend months with them.  But sometimes a day IS enough to renew your hope, your spirits, your energy.  I'll take it.

DeeDee

Time to Update Things......

We are still looking for a  kidney.  We'd be thrilled to find a volunteer living donor!  Babygirl is blood type O positive, so she can get an O positive OR O negative kidney.  You can find out your blood type by donating blood.  If you're too squeamish to do that you are likely not good donor material.  If you are too small to do that, your doctor could do it, or you could ask me to mail you the donor forms and our hospital will.

What criteria do a living donor need to meet?  Under 35, preferably. Absolutely no personal history of High Blood Pressure or Diabetes, or any other disease that puts the donor's kidney function at risk.  Body Mass Index under 30. 

Babygirl is of Native American/Hispanic origin, but anybody of any race could be a match.  We live in the northeast, so proximity is helpful but  not absolutely necessary. 

If you can't donate, then feel free to post the link to this blog on your facebook page.  Feel free to put my baby on your church prayer list.  If you'd like, I'd be happy to mail posters with Babygirls adorable face on them anywhere anyone would be willing to put them. 

Thank all and any for your support.

DeeDee

New Year's Resolutions.........

I don't have any.  Well, none that are really new.  But as last year wound down I found myself wondering what I could do this year that would make things simpler, kinder, gentler.  So here are a few thoughts:

My mom is in failing health. She frequently forgets what we are doing, where we are going, or what the point of what we are doing is.  I have already, for the most part, stopped trying to keep her up to speed.  If she asks a question for the third time I try to answer it the same way I did the first two times - as if it were still the first.  Sometimes she realizes that she has asked before and sometimes she doesn't, but it's less stressful for her if I stay cooler.

We have already said "No" to anyone who needs our help with anything big this year.  No one else can move in, and once out, no one can come back.  It's time to circle the wagons around Babygirl and let her have as much of our attention as it is healthy to give her.

I am amazed by how little time it took to become accustomed to letting my head slide into meditation at the dialysis machine.  I plan to continue doing it!  I've also noticed that it is easier to take a moment and send out a prayer for someone else, since I'm developing a habit of it (and about danged time too LOL!).

I am doing better at letting myself rest, and not beating myself up too much if I don't feel like putting together a three course meal every night. Right now, my bedroom, Babygirl's room, the living room and both baths are clean. The laundry is done.  I consider that to be as much of an accomplishment as painting the Mona Lisa.  And it probably took nearly the same amount of time. (Too bad it isn't as permanent!)

I am not jumping as high with every phone call.  And I hope that when "the call" finally comes that I'll be able to just go with it, keeping my own cool so my baby won't get anxious.

Habits I still need to form?  I need to keep the gas tank full.  I'm still not really good at this.  And every once in a while I realize I don't have my cell phone on me.  I need to keep remembering that it's okay to ask for help.  Often.

And I need to remember to give thanks for all we have. Reading this blog http://jamescamdensikes.blogspot.com/ has shown me just how much I do have.  If you have a spare moment, pray for Jamsies' parents.

So thanks, God.  For home, family, life and food.  For funny, homely moments that hang in the heart and soul long after they pass. For work, play, and sleep.  For a hubby who knows that a box of Malted Milk Balls in my stocking makes my Christmas.

Happy New Year!  God bless us all!

DeeDee

Week Thirty-six......Facing A New Year.....

Last year at this time I thought I was surviving just about the worst thing that had happened to me, ever.  I was on heavy meds for a run of migraines that literally could have killed me.  I was beginning to believe I had permanent brain damage - I couldn't add small numbers, remember big words, pull sentences together (all things of some importance when one makes a living as a physician).  I was not sure I'd ever be able to work again, and was trying to imagine how we'd survive financially.  I had a pregnant teen in the house and was very worried about her.  Hubby's knee was wrecked, my oldest daughter was suffering from post-partum depression, and I'm sure I've left some things off the list of cares and concerns.  I clearly remember thinking, "I can't WAIT until this year is OVER. 2011 has GOT to be better."

Well, the cognitive issues turned out to be the result of the migraine meds, and are mostly better.  Both my daughters are doing fine, and my granddaughters are delightful. Hubby had is knee repaired and is back to work. We had a loving and happy Christmas despite our financial constraints.

But there are new challenges.  My mom's health has been declining and more of her care rests on me.  I am still not able to work full time, so money is tight.  I have another pregnant teen.  Our kids were displaced by the floods, and lost much of what they owned. Hubby's dad died on Christmas Eve.

And Babygirl still needs a kidney. And we are still unable to get her dialysis paid for by either our insurance or medicare.

I certainly can't say I am sad to say goodbye to 2011.  But I am superstitiously afraid to wish for a better year.  Look what it got me last time.

DeeDee

Turning the corner.....

A minor update for those who have been praying for Babygirl this week:

She is eating a little, and drinking well.  She has been on her feet a couple of times for an hour or two at a time.  She lost all the weight she regained, but seems to have stabilized yesterday and today.  This morning she is sleeping in, as she did yesterday. There was no significant fever yesterday, and the antibiotic seems to be making he throat feel better.

So she will have a Merry Christmas.  And therefore, so will I. 

And I will keep the families who got new kidneys this week in my prayers, and the family of the donor; one group rejoicing but suffering through surgical recovery, one group mourning.

We have much to be thankful for, indeed.

Remember this Christmas to not take your family, your health, and your life for granted.

And sign your organ donor cards.

DeeDee

"This is the LONGEST......."

So Babygirl's been acutely ill since Monday.  By Tuesday she had a very sore throat and a fever of 102.6 degrees.  The family doc saw her Monday, did a rapid strep and sent her home.  Tuesday got a full throat culture and peritoneal dialysate culture, both negative.  Fever ongoing through Wednesday, with Babygirl looking increasingly ill.  Poor thing - her throat hurt so bad she didn't really want to drink, and eating made her nauseated.

No fever this morning, but tears because the throat hurts SO bad, so we just came back from the family doc.  We went to get blood work after he spoke with nephrology.  I was concerned about possible mono, but it turns out they already tested her and she's immune, but we are rechecking that.  Meanwhile, this is day number four of no school, and Christmas vacation starts tomorrow.

Overall, it's been a bit draining.  I have taken off two afternoons, which is something I really can't afford to do too much of.

But then, there is Babygirl's perspective.  "Mom, you know, this is the LONGEST I have ever been sick!" Well, I guess not counting the Swine Flu for five days last year, and the fact that you are IN NEED OF A KIDNEY TRANSPLANT!!!

Seriously.  I had to laugh, later, privately.  The kid is sick enough every day to qualify for Make-A-Wish!  And somehow, she doesn't see it that way.

I'm proud of her endurance.  And I'm kinda proud of us.  I think that if she doesn't perceive herself as "sick" all of the time, we have acheived something great for her - a semblance of normal life.

DeeDee

Week Thirty-five - What Happens If She's Sick When........

Babygirl awoke this morning with a sore throat, fever and bellyache.  Fever and bellyache scare me. After all, what if it's peritonitis?  But the dialysate is clear, and her tummy is soft.  So I decided that she should stay home from school, and call the family doc and the dialysis nurse for further advice.  Babygirl lays down on the couch and falls back asleep, and I carry on getting ready for work, Hubby all unaware of this little drama.

Then Hubby comes downstairs holding our cell phones, in the middle of a call on his, which he thrusts into my hand saying, "It's the hospital."  The OTHER hospital.

Of course it is.  And like last time, the first thing they say is, "We're calling to see how Babygirl is today."  Well, this time at least I immediately understand the purpose of the call.  Tears burn behind my eyes and I tell them, "She's sick."  I fill them in on the details and watch Hubby's face go from hopeful to bewildered to crushed.  "Well, she was just backup" the transplant nurse tells me.  But I don't need to be told that the reason they HAVE backup is because there have been times in the past when the first and second choices have fallen through.  And last time she was only two spots away from the top slot.

And I have less than twenty minutes to let this all go, get ready for work, and take care of people who come to me to fix THEIR problems.  And that's tough to do because my phone keeps ringing - the family doc ("We can fit her in at eleven"), the dialysis center ("Don't worry about peritonitis if the fluid was clear."), Hubby ("Med list?"), the family doc again ("What shots did they give her at dialysis?"), and some random call I later figure out was a reminder for me to take my mom to the heart doctor later this week.

Turns out its "just a virus." "Can't you just call them and tell them to wait?"  I am amazed at how many times today I've heard this.  No, it can't wait, it musn't wait, someone needs that kidney as soon as possible. And I know that if they suppress her immune system while she's fighting a virus it could kill her AND the new kidney. And it isn't worth the risk either way. So somebody elses' child is getting a kidney today, and Merry Christmas to them.

And many, many many many prayers for the family who, six days before Christmas, have had to decide whether or not to donate their child's organs.  And bless them many times over for choosing to do so.

And we get to celebrate Christmas at home.  We almost missed Halloween last time.  Well, if God doesn't want us to miss a holiday at home, there's lots of non-holiday time between New Year's and Easter.  We'd be happy to go anytime......

DeeDee

Week Thirty-four - Sing We All of Christmas......

Sing we all Noel!

That's the song in my head tonight.  I sang Babygirl to bed with "O Come All Ye Faithful" a couple of hours ago while the machine hit an alarm I've never seen before ("check to see if heater bag is on the heater and check if heater bag clamp is closed").  Odd one to get when the machine has ALREADY  been pulling fluid from that bag for five minutes, but hey, I checked, the machine believed me and it's been quiet since.

So how are we all doing in our Christmas preparations?  We have our very obese Christmas tree up.  Usually our Nativity set goes up before we have the tree decorated, and setting that up is a family event.  This year I wasn't able to manage it, and my middle daughter set it up on her own (nice job, sweetie!) and got all the empty decoration storage bins out of the dining room where they had been sitting unattended for a week.  There are no outside decorations up.  And our mantle could use a string of lights.  I needed that one to replace a tree set and haven't had the time to get another.

And as for Christmas shopping?  Well, I missed Black Friday.  And I haven't really done anything else.  What I do have, I have wrapped.  But I'm starting to feel a bit pressured - a lot to do, not much money to do it with, and less time.

The bills are starting to pile up.  We haven't heard from Social Security on our Medicare appeal.  I need to get on the phone and talk to them, but tomorrow is already so booked I hardly know what to do first.  And no matter what else I choose to do, I have to be home in time to put the dialysis machine together. I keep asking people to be patient, but you know in your gut that sooner or later you'll owe someone so much that they'll just say, "Hey, we can't treat your kid unless you pay."  And the dialysis bill is the big one - we're up to nearly $5000 and it's being contested by our insurance company.

I despise the idea of using a credit card for either Christmas spending OR for medical bills.  And my paycheck is already showing the 20% cut I had to agree to this year to balance out what I know I am not going to make because of my illness.

"Peace on earth, and good will toward men."

Peace sounds good.  Trust, better.  Faith, great.  Hope?  Wishful thinking some days.

DeeDee

Week Thirty-three - Mixed News From the Dialysis Team......

We spent yesterday morning traveling to and from our monthly meeting with the team.  And the "team" designation is really not an exaggeration.  Nurse, nurse practitioner, dietician, social worker all see us each and every time we go.  Every three months we have to collect a twenty-four hour urine specimen (yeah, I agree) and a sample of dialysis fluid to take along, and this was THAT month.  They drew blood (each visit) and informed us that somewhere between last summer and last month, Babygirl managed to lose her immunity to Hepatitis B. There is no real way to explain why.

Well, that just stinks. It turns out that they screen all donors for hepatitis B antigen (the actual virus, indicating active infection) and antibodies (indicating immunity).  If the donor is antigen positive, they are crossed off the donor list no matter what because they will certainly transmit that virus to the recipient.  Since the recipient will be deliberately immunosuppressed after the surgery, that is an unacceptable risk. But if the test positive for the antibody only, it means that either they were vaccinated and it "took", or that they had the disease, got over it and are immune.  But there is an ominous third possibility - that the donor has so little virus left in their blood that we can't detect it and partial immunity, in which case the virus could still be transmitted to a recipient who is not immune.  Therefore they won't give an antibody positive kidney to an antibody negative recipient.  And since nearly everybody under the age of twenty-five has been vaccinated, that eliminates a LOT of donors. 

So.  Babygirl rolled up her sleeve and got a quadruple dose of Hepatitis B vaccine divided into two shots (her choice to divide the large fluid volume).  And she'll get it again next time we go, and again in six months. And the only complaint she's made about that is that the bandaids all itched. Really? Three pokes and that's it?  I am, as I frequently am, humbled by her.

On the good news side, she is growing again.  Her appetite suddenly went out of control a couple of weeks ago and she has put on two pounds and grown half an inch.  It's not much compared to last year, but we'll take it! Her last labs were all okay, and we're hoping that this batch is okay too.

One of the things I noticed while waiting for our next appointment info was another child's urine collection container.  Babygirl's had nearly two liters.  The other had barely a tenth of that.  We are so blest that she continues to get rid of water and potassium on her own - this would be unbelievably more challenging if she didn't, which is, frankly, frightening to imagine.

DeeDee

Machine Machinations......

Just about the time I think I can take advantage of the machine, it decides to make that impossible. After nearly two full months of peaceful coexistance, we drew The Red Screen of Doom again last night.  The machine gave us a bit of trouble the other night, and the scale needed to be reset.  But last night! Arghhhhh!

Hubby was setting up and one of the bags (eleven pounds, remember?) slipped out of his hands and landed a bit hard on the scale. So the remainder of set-up was challenging, to say the least. We had to get tech support again. Nothing we did reset the scale.  And the Doom screen popped up, this time because the internal pumps were out of sync somehow.  Forturnately, we were able to get over it, get it all reset, and make the Red Screen go away.

I suspect that we may be having trouble with the scale because of the cat.  Sometimes we don't have time to fully disassemble everything from the machine, and a nearly empty bag sits on the scale (which is also a heater) until we get the chance to pull it off - sometimes toward the end of the day. I'm guessing that the cat probably finds this a cozy place to hang out, and although she's very small for a cat, leaping from the floor to the heater/scale may lead to a pretty solid landing. 

I'd keep the cat out of the room, except that Babygirl wants her door open when she sleeps.  And since this kitty is a hider, once she's in, I can't find her, nor can I find her anywhere else to prove she isn't in there!

So we just have to keep resetting the scale as needed. And go back to meditation when the situation allows.

DeeDee

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 - 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

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

Week Twenty-eight.......Happy Halloween!

The thing about the kidney failure diet that bugs my baby the most is not being able to eat chocolate.  Since she was tiny child, it's been her favorite thing.  She was very malnourished when we got her, and she didn't much care for milk, so I actually added chocolate syrup to get it into her (Hey!  I know it's bad parenting, but sometimes you just have to do what you have to do!).  She was the child who did  the happy dance outside the oven for the entire 28 minutes the brownies baked.

So I was thinking that Halloween was going to be one ugly holiday for her.  She isn't really a big candy fan.  Skittles and Gummy Bears hold no real appeal for her.  Starburst?  Okay, I guess.  Smarties?  You can have those, mom.  But Reese's Peanut Butter Cups?  Dang - they are the BEST!  And the low-phosphorus diet says "no" to both peanuts and chocolate.

So I was VERY relieved when the dialysis team laughingly admitted that every child shows crappy results on their phosporus levels on the first Wednesday of  November.  They told Babygirl that she could have some chocolate but that she would need to take extra phosphate binders (the prenatal vitamin-sized ones!).  She was very happy, and I mean VERY happy to do that tonight.

The look on her face while she fully appreciated a peanut butter cup was worth a fortune.

DeeDee

Week Twenty-seven......Time For Silliness

My baby has some interesting tastes for a child.  She is a "show junkie."  If it's playing at the old Art Deco theater, she is happy to go and see it.  It doesn't matter what it is, really - kids' musicals, Haendel's Messiah, Broadway shows, even (or perhaps especially) opera.

Now, I love music.  And my tastes range widely, from Eminem to Josh Groban (who, by the way, is Babygirl's favorite after Selena).  But opera has never really been my gig.  But that was, honestly, before I ever got to SEE an opera.  So although I'm still not a fan of listening to it, I do like to watch it, especially with my little one. 

But I have learned something important about opera.  It isn't just music, and pretty costumes.  It's libretto.  And the words to opera add up to some pretty incredibly heavy themes.  I made the mistake of taking my baby, then aged nine, to see Faust.  The libretto is flashed for the ignorant unilingual among us on a screen above the stage.  I am reading this to Babygirl as we go along.  But really, how does one explain a deal with the Devil that returns you to your youth so you can seduce an innocent maiden, get her pregnant, abandon her so she loses her mind and kills the baby?  And then she choses the death penalty rather than make a deal with Faust and the Devil to extend her freedom? 

So I've learned to check ahead.

Three weeks ago my mom called.  She wanted to go and see Madame Butterfly and take Babygirl with her.  Hmmmm.... "Mom, it's a pretty dark story.  Butterfly cuts her guts out in the last scene."  "No way!  I saw it when I was nine and there was no such thing!"  So she keeps bugging me about it and I finally said okay, but I just know this is going to be another Faust LOL. 

A week before the show my mom is going on about how excited she is to be seeing a Gilbert and Sullivan show.  Pardon?  Madame Butterfly is so NOT Gilbert and Sullivan!  Finally I figured out that mom was thinking of The Mikado, which, to give her some credit, does have Japanese characters also.  Needless to say, the suicide in the final scene of Madame Butterfly came as something of a shock to her.  Babygirl took in in stride (I HAD warned her) but argued that Butterfly  just "should have divorced that loser and gotten on with her life." 

Between the two of them I had all I could do to not simply laugh out loud in the middle of a death scene.

We are going to see Peter Pan tomorrow.  That should be easier to handle.

DeeDee