Week Fifty - Parent-Teacher Conferences......

Babygirl's parent-teacher conference was yesterday.  I wasn't entirely sure what to expect.  After all, she's missed as much school as she's attended this quarter.  I was particularly concerned about her music class.  Arts classes (music and art) are only one quarter long.  The rest of the year is divided between Technology (known as "shop" when I was in school) and Home and Careers (known as "home ec" in the dinosaur days, and aka "Homos and Queers" to the extremely un-PC kids of our middle school). 

So. 

Things are going extraordinarily well.  It seems that having a new kidney makes you smarter.  She is keeping up with her homework and nagging her classmates to do the same.  She is more social.  Less distractable. Her test scores are up.  Her math and reading skills have taken a decided turn for the better.  Her overall average will likely put her up for Honor Roll for the first time in her life. 

Her teachers generally exempted her from missed work while she was gone - especially music.  But her current test scores reflect the entire quarter's learning, including what she missed. 

The only test she did poorly on was one where the class had a BIG review the day before the test.  We were in Philly on review day.

I'm so incredibly proud of her.  She works hard, and deserves every good grade she gets.  But before the transplant she worked every bit as hard, and was barely getting by.  I think, perhaps, that she WASN'T the "healthiest sick kid you'll ever meet."  I am certain that we underestimated exactly how sick she was. 

This thing snuck up on us.  Her kidneys took years to die, and we were totally unaware that it was happening.  Her school struggles were simply part of who she was.  And when the dialysis doctors told us that dialysis would make her do better in school, we were (rightly) skeptical about it.  Dialysis is NOT a cure for kidney disease.  Their goal was to change the metabolic chaos of total kidney failure to the appearance of manageable insanity.  And while it was clear that she did feel better, the sleeplessness and ongoing anemia were adding to the fatigue and lack of concentration.

Because the kidney failure was gradual, and because she had such a huge history of things that could slow her down (starvation in infancy, leg fracture at 9 months, functional blindness diagnosed at age 6) we had no reason to think that there might be MORE. 

I suppose I could feel guilty about this.  I don't, really.  I still feel bad that we didn't notice that the poor kid couldn't SEE, but this was far more insidious.  I'd like to be able to give a list of things that might have tipped us off, so I could share it with other parents and maybe help them find this sooner.  But I can't really think of ANY except the fact that she complained of feeling cold. 

DeeDee.

Week Thirty-nine - Nothing Notable......

Three-quarters of a year have gone by since we first discovered that Babygirl was ill.  In the amount of time it would have taken to make and have a baby, we have gone from the parents of a 'normal child', to desperately crazed parents of a 'special needs' child, and back to something once more resembling 'normal' parenting. 

As far as Babygirl is concerned, she is not really any different.  She has things she's not allowed to do, and stuff she wishes she could eat, but overall she seems to have thoroughly adjusted to her new life.  Hubby and I are more relaxed, less likely to threaten to shoot the dialysis machine, and actually better at our relationship than we were before she was diagnosed.  We communicate better (usually!), and take better care of each other. 

We've survived surgery (one each for hubby, Babygirl and I), a major illness (me), a massive flood, the birth of our granddaughter. We're in the midst of major remodeling. We've changed the household composition from six, to four, to eight. We will likely soon be down to just the three of us, the smallest family we've had since 2001, before hubby and I even married! And, oddly, I am at peace with all of this.  This week, at least.

I have to say that it is wonderful to report that there is nothing to report.  There really only is so much drama that one can stand. 

So this weekend we leave to visit the tertiary center for a general update.  I get to visit my brother and sister-in-law, and as a bonus, my NYC daughter will be visiting them as well.  Life is good.

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

"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-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

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

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

The Phone Call.......

This morning around ten we got a phone call from the transplant coordinator.

"We may have a kidney that matches.  Is Babygirl okay?

I puzzle through that for a couple of seconds and realize she is asking about her immediate health.  She's fine, praise be - healthiest sick kid you ever saw!

"Well, then, please stay near the phone.  We are running crossmatching and it will take about 3 hours.  I'm not saying she'll get the kidney - there are people ahead of her on the list, but the match looks really good."

So. 

We decide to tell Babygirl nothing until we are prepared to stick her in a car.

Hubby cries.  I call the prayer chain.  We pack a suitcase.  I cry.  I shoot off a prayer for the family of the donor. And we do our very best to figure out what to do next.  I spent some time talking to the oldest daughter who is still at home.  I'd have to leave money to run the house, maybe a signed blank check or two to keep the construction going.  I chat with the contractor, who despite the fact that it is Saturday is working like a maniac in my house.  Thank God the new windows are all in already.

We sit down and do paperwork.  One set is for estate planning, wills, trusts and so on.  It's a tough conversation on a low stress day, and even more interesting on a high stress one.  How do we provide for Babygirl if God forbid something happens to both of us?  We made half a dozen phone calls confirming what we already know:  Family will happily step in and do whatever it takes.  All of my girls are willing to graciously give up a portion of their inheritance to their sister for a trust fund to help her with her medical issues. 

After the eternity that this paperwork takes us, we check the time. After all, three to four hours MUST be nearly over already!

Not.

We still had a couple hours to kill.  Hubby went to start dinner.  I continued with household papers.  I do laundry. I sew. I watch, and watch, and watch the clock.  When it is more than an hour past the time they said they'd call, I slump.  I literally feel my blood pressure drop, and my ears ring.

Half an hour later they called back.  "Babygirl was a perfect match to the donor, but so were the people ahead of her, sorry."  There were two kidneys, and three people ahead of our baby.  The good news, I suppose, is that there is now only one child of her blood type ahead of her in line, and kidneys usually come in pairs.  And I suppose I should really be happy not to be driving three and a half hours in this unbelievable freak snowstorm. And babygirl will get to go trick-or-treating with her friends in the Halloween costume I finished making while I waited for that phone call.

Oh, drop dead, Pollyanna!  I'm going have a good cry anyway.

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

Week Twenty-six......Half a Year

I started thinking about this post nearly three months ago, wondering where we'd be at this point.  After all, we had just found out then that there was no real hope of getting a kidney before dialysis became a necessity, that things were going from bad to worse, and finally getting the hang of the idea that we had a very sick little girl on our hands.

Compared to then, I feel almost normal.  People ask me how I'm doing and I'm able to respond, "Good."  It's true as far as it goes, but actually what I decided to do was to re-define "good" so that I could say it and be honest.  After all, even I've gotten a little bored with only having drama and sorrow to report.  I can't imagine how tired my friends and co-workers are of hearing it!

But the beauty of redefining what constitutes a good day is that you have more of them.  If we only wake up once or twice a night, it's a good day.  If we get to sleep through?  It's a GREAT day.  Sunshine?  Great day.  Rain without danger of flash floods?  Good day.  Grandbaby content to walk the dog with me?  Great day.  Grandbaby cranky but I get to hold her anyway?  Good day.  My brain functioning well on meds with no migraine?  Great day!  New contractor making progress on new bathroom?  GREAT day.

See?  It's simple.  And it will keep working as long as there really isn't any new drama.  But this six month mark still feels like a huge milestone.  When I look back, and think how we sort of expected to have a new kidney by now, and figured that a new kidney would actually solve all the problems, I see we've had to come a ways toward accepting our new reality.  And while I'm ready to carry on as long as needed to keep Babygirl's life as well-balanced as possible, I still have a huge problem with imagining that we will be in exactly this same position when we hit the one year mark.

DeeDee

Week Twenty-five.....The Donor Search.......

We've had posters of Babygirl's cute little face distributed all over by anyone on the move from here to anywhere.  Periodically I get a random call from somewhere, asking about her and whether we still need a kidney.  Well, yes, as a matter of fact we do.....

I am still amazed by these calls.  Humbled.  Impressed.  The vast majority are from other moms, who see her face and her age and pray that someone somewhere would do for their child what I am asking them to do for mine.  In the past three weeks I have sent out five information packets, and sit with my fingers crossed.

But yesterday I got a call that was less than typical.  It was a man, to begin with.  Not that we haven't had male volunteers, but all of the men so far are people who know Babygirl personally.  This gentleman had heard of our daughter via a church newsletter (which, by the way, I had no idea was going out regularly in our district).  He told me that his dad had received a kidney from his aunt more than 30 years ago.  The kidney survived 25 years, and his dad a few years more.

I gave him the standard spiel:  under 50 years of age, good health, no diabetes or high blood pressure, and acceptable body mass index.  He met all but the last.  But his next sentence astonished me:  "Let me see if I am a match.  If the only problem they have with my donation is my size I PROMISE you I will do what it takes to lose the weight."

To me, this is breathtaking, absolutely stunning determination to pay back what someone else did to give him a father for his childhood and adulthood.  I understand what called to him about Babygirl's story, but he could have been tugged in this direction for any other child who needed him.  And somehow, he waited for us.

DeeDee

Week Twenty-three - Walking the Walk.....

The "dailyness" of Babygirl's illness is beginning to truly sink in.  There is a new definition of courtesy here.  "Honey, I'll set up the machine for you." or "I know it's your turn to be up, but I'll take it. I'll be fine."  We watch each other for signs of wear and tear, and check frequently for breakage.  She seems fine.  It is hubby and I who must be alert to each others' weaknesses, for her sake as well as our own. 

It comes down to this, really:  What we do for her each night with that dialysis machine is both a blessing to her ongoing health and a very dangerous process.  We are both strongly aware of how fragile this system is, and how dependent it is on our ability to keep cool heads and clean hands.  We must not ever let our escalating exhaustion and frustration lead us into carelessness.

So let's discuss peritionitis.  Peritonitis is what happens when germs enter the peritoneal cavity.  Since this is naturally a sterile area with no natural entry point, the peritoneum is not equipped to fight infection, or to comfortably cohabit with germs as a matter of course (as such areas as the mouth and rectum can).  Peritonitis occurs when something breaks and releases germs into the area (ie appendicitis or pelvic inflammatory disease).  It can also occur when germs are accidentally introduced from the outside (stab wounds, for example).

In Babygirl's case the risk is that we will somehow get germs into her dialysis catheter.  During the day the tube is capped with betadine laced cover.  At night, though, we have to remove that cover and hook the tube to the machine.  And we have to hook fluid bags, and clamps, and so on into THAT tube.  The possibility of error is great, and we have to be very focused during set up to avoid touching any open port. 

For me, I think the fear is greater than it is for hubby.  Not that he isn't careful, he really is.  But I have seen peritonitis, and realize that not only could it be fatal, it frequently is.  It is also excruciatingly painful (and that's a word I don't use lightly, since it derives from the pain equivalent to crucifixion). I think about it every single night when I hook her up, and every single morning when I unhook her.

I truly think I would die if I knew that some carelessness of mine killed my baby.  Truly.

DeeDee

School Update.....

One of the struggles we have had throughout our baby's life has been solving her educational problems.  When she was a toddler, she qualified for Early Intervention Services.  It's easy to get into these - you can self-refer your child, the child is assessed by a group of great folks who do nothing but take care of kids with special needs, and they treat what they find.  But when the child turns three, they age out of that system and must be taken over by the local school district.  Even that wasn't so bad - the district looked at the evaluations done by EI and pretty much agreed to continue the special education, speech, occupational therapy and physical therapy she'd been getting in a special preschool. 

Then we came to kindergarten.  The school looked her over, declared her "caught up" and dropped her IEP (Individualized Education Plan). I found out later that "caught up" means "only a full two years behind other kids her age." She struggled thru K and 1st and then we discovered that she couldn't SEE.  We asked for more help.  We were told she didn't need it.  Second grade, same.  By the end of third she was barely funtioning at a 1st grade level and I put my foot down and insisted she be held back, so she had some time to do some catching up.  She is closer to where her classmates are, but still has to struggle with a lot of basics, despite repetition at home as well.

And now the medical stuff.  So last week our social worker from dialysis took on the school district.  And now, after all this time, they are going to assess her for an IEP!  Dang, all it takes is a deathly illness and the school suddenly pays attention! (Sarcasm intended.)  The bonus of this is that she is finally going to get assistance academically that she should have had all along in my opinion.

I guess every ugly cloud has some silver lining.

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