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-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

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

Gratitude Redux.....

In Sunday School this morning the reading was about joy.  The end of Phillipians where Paul tells us to "be anxious for nothing" and pray.

Then our Sunday School teacher began to ask question about how all this fit into our lives.  One in particular stands out in my mind:  "What is the best thing that has happened to you this week?"

Well.  Honestly?  The best thing that happened was the dialysis machine breakdown.  We fussed and fiddlefarted around so much with that second machine that seeing it die was a honest-to-goodness relief.  And the new machine works better, hurts less, and is letting us SLEEP.  Yup, machine breakage wins as best moment of the week.

Who'd have thought?

DeeDee

Dang Those Machines......

Our second dialysis machine expired two days ago.  Don't ask me to explain it.  It never worked as well as the first one and THAT one died after just three weeks of use. 

But remember the flood?  Apparently some wires got crossed with the ordering of our machine.  We got the one that the National Guard had to assist with the arrival of.  And then two days later we got another via UPS. 

I have to admit that it was probably less than totally honest to keep that extra machine.  But by the time it got there, the other machine was already acting hinky, so hubby and I just shrugged and said, "What the heck!" and kept it. Someone came to pick up our damaged machine, and a few days later someone else arrived looking for another one.  I actually explained to the FedEx guy what had happened, and why we wanted to keep the machine.  He just smiled and said, "I'll just tell them there was no pick up!"  LOL.

So two nights ago I had to call tech support yet again because our machine refused (as usual) to "see" our fluid bags.  We had just straightend that out, and I had hung up the phone, when the machine suddenly declared there was a balloon valve leaking, and advised me to shut down RIGHT NOW and call tech support.  The red screen of doom appeared (we've never seen that one before!) and tech support advised me to set up a gravity dialysis while they arranged shipment of a new machine. 

So I told them.  Well, actually......I just happen to have a spare.  I could tell by her response that this was not at all typical LOL.  She walked me through setting up the new machine, and all has been well since.

But honestly, if we go through one new machine every three weeks, how many are we going to use before we get that kidney???

DeeDee

Week Twenty-four - Smell the Roses.......

In the five years prior to Babygirl's kidney failure diagnosis, I made some changes in my life.  Something woke me up to the fact that I was destined to die young if I didn't.  I think the trigger was arriving at the age that was ten years younger than my mom was when she had her first stroke in her fifties.  And Babygirl was the impetus that kept that trigger firing.  I joined Curves and went three times a week faithfully.  I began eating five to seven servings of fruits and veggies daily. I went to my doctor, got my blood pressure and cholesterol under control and started medications to help me lose weight.  When I got stuck on the weight loss, I added a daily walk with my dog (to his eternal gratitude LOL).  And I kept it all up, even through the months of my illness last winter and spring.  I even walked the dog the morning of my cardiac catheterization (it was fine, thank you.). Overall I lost more than 65 pounds.

But now we are AFTER kidney failure.  I can go to Curves three times a week every other week, since I can't go on days when I am the nighttime dialysis manager.  I walk the dog, sometimes.  And I sometimes grab a piece of fruit on my way by the fruit bowl.  I know that in order to take care of her, I must take care of myself, but I often lack the internal resources to do both.  Fortunately, I have not regained any weight, but I can feel clothes tightening up as muscles loosen up. And I know that I'd have more energy if I did more exercise - it's a cycle that I learned when  I first started the changes. 

My dad has always told me to stop and smell the roses.  He knows that I am a high-pressure, energetic, driven, take-no-prisoners lunatic who really needs to slow down and breathe now and again.  But the problem with all of this is that there is no real enemy to fight, no dragon to slay, no prince to rescue.  I'm swinging swords at clouds and puddles, and there is no winning that battle.

So I am trying to let go of the "battle."  Walking.  My neighbors have beautiful gardens, and on the corner one block from here is one of the loveliest rosebushes ever.  And the roses, coincidentally, are at nose height.  They smell wonderful.  I took my two month old granddaughter with me for one of these walks, and had her smell them too.  I work on relaxing enough to laugh at the jokes, play the games, focus on the book I'm reading.  I try to remember that very little outside my work and Babygirl's dialysis machine is actually life or death.  Dinner?  Well, as I observed some time ago, cole slaw from KFC is actually a veggie.  Clean house?  Delegate to some of the flood refugees who inhabit my house.  Make the bed?  Are you kidding?  I didn't do THAT before the kidney failure!

I can't live my life on high alert.  Every cell phone call is NOT the transplant team.  My adrenal glands need a break.  God gave me a great life.  I have the privelege of relaxing and enjoying it when I can.

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

Week Twenty-two - More Gratitude....................

Once you start counting your blessings, more of them become obvious.  So I am going to mention a few that I forgot, or at least one that has appeared since my last post.

Sunday I needed to take Babygirl to the tertiary center for two doctor visits.  One with anaesthesia, so they could see that she was healthy enough to survive sleeping through a five hour procedure.  And one with pulmonology since (she has a history of asthma), to make sure she is breathing well enough to survive transplatation.  We had no difficulty with either exam,since she just had her first surgey without complications, and since her last asthma attack was about seven years ago.

But what am most grateful for is that a good friend who lives about a thousand miles away suddenly turned up at my door while I was loading up to leave.  You see, I had this insane plan to run Babygirl's gravity dialysis IN THE CAR while we were driving the three hours to my sister-in-law's house.  The principle of that is that you dump in a liter or so of fluid, leave it in for an hour and then drain it out, repeat times six.  I figured we could get half of it done on the road, half at my sister-in-laws's house, and then be able to SLEEP.  But my friend, who has known me since we took a prenatal exercise class together twenty-two years ago, looked at me and said, "You are in no condition to drive.  I'll take you."

Now, seriously.  She drove from Florida.  To Boston.  And then five hours HERE.  And she wants to hop in her car and drive another three hours?  And back the next day, all while her lunatic friend juggles dialysis bottles on her garment hooks?

That's the kind of friends I have.

I'd be insane not to be grateful.  So she drove, we caught up with each other's lives, and I ran the gravity dialysis for the first time.  Needless to say it was a learning experience.  Can it be done in a car?  Yup.  Is it a good idea?  Not bad actually, but better maybe on a longer journey.  I screwed up enough that she got three runs instead of six, but I figured that was better than skipping altogether.

And after our appointments I stopped at the transplant unit to drop off a copy of our local heart doctors visit (done to make sure her high blood pressure hasn't damaged her heart - it hasn't).  They kept us an extra hour to have me sign permission to get her on the active transplant list and draw a tube of blood.

So now we are listed in two states!  Yippee!  And it WAS bliss to sleep a whole night.  Now, if it isn't to much to ask, I'd like to sleep a whole night in the same bed as my husband ;o)

DeeDee

Things to be grateful for.....

Since the last few posts have been, um, a bit negative and depressing, I thought that this morning I  would start with a bunch of the things I am grateful for.

Our city just survived the worst flood in its history and our home was not damaged or even wet.

My oldest daughter.  She is raising three kids, building a new house, surviving in interim housing, and still praising God every Sunday morning.  I am grateful for her husband as well (it's his birthday today!) for being a loving and supportive man. I am proud of them both.

My next oldest.  She just graduated from an Ivy League school, and she's in California right now, about to leave for France, then Italy, on a wine-studying scholarship.  She's one of only 10 people nationally to win this award. She has a job and an apartment lined up in NYC when she comes home. I am so incredibly proud of her.

My middle daughter.  She and her boyfriend survived the flood and are not complaining at all about losing everything from their first floor.  They just figure they'll start over!  Their baby girl is the cutest, but she is one of those needy demanding little souls, but they take turns and handle it pretty well!  Living with grampa and gramma for a few weeks until the apartment is cleaned up may help ease that a bit - at least she doesn't have to cook! I am proud of her parenting skills, and of her boyfriend's determination to support them all so she can stay home at least a year with the baby.

My next youngest daughter.  She is juggling collge and early pregnancy, making wedding plans and all of that.  She's clearly exhausted, but hanging in.  I am truly proud of her too.  Her boyfriend also lost a great deal in the flood, as did his mom and siblings, so he's here to, and he never says "no" when I ask for help!

Babygirl.  I am so proud of her.  She picks her tired little self up in the morning, heads off for school, and almost never complains about how radically her life has changed.  The other day she told me, "The only thing I like about this is that when I get my new kidney, I'll be able to eat chocolate!"

And lets not forget Hubby.  Whosever turn it is to set up, it is both of us who listen to tech support, amusing each other with funny faces and rude gestures.  And cleaning up to remodel and prepare for our next stage of life, which was SUPPOSED to be a nearly empty nest LOLOL.  In a way I guess I am proud of us both.

There is always someone to play a game with. God seems never to let the population in our house drop below six (three just moved out, four just moved in, and we are up to eight).  And when someone tells me, "Man, your hands are FULL!"  I usually say, "Well, it's better than having them empty."

DeeDee

Fighting the new machine

The old dialysis machine failed The Bubble Valve Test and was sent to the happy hunting ground.  The new machine worked fine for the first two days, and then it refused to acknowledge that we had a bag on the warmer.  Then it couldn't find the second bag and insisted that we didn't have enought fluid to finish treatment. 

Tech support loves us.  (Thanks, Maria and April!  You guys are great, really LOL.)  So....we learned a lot more about how to make these machines talk to us.  Who knew that there was an entire touch keypad hiding in there?  Despite the fact that we (okay, I) actually threatened to shoot the machine after 2 hours of fiddling with it, we (okay, hubby) got the scale reset.  Seriously, the scale was off tare by 20 grams.  We are playing with 5000 cc bags, which, because they come with extra fluid in them anyway, weigh about 5100 grams.  That's a very low tolerance for error, which I suppose I should be grateful for, since it helps protect my child.

But gratitude is hard to scrape up when it's a school night.  Set up should take 15 minutes, and I allow half an hour.  So from 8:30 until nearly 11:30, we were in her bedroom, discussing cartridge fit, scale balance, pulling IV poles in and out of closets, ripping open boxes and bags and throwing away yet more opened but unusables supplies. And her school only just reopened after the flooding.  And she has two doctors appointments this week, and has to take a day off next week to go to the tertiary center for additional tests.  And since then (two more nights), the new machine has been setting off alarms during the fill cycle - like it's too weak to push fluid in, as well as causing the usual pain with the drain cycle.

They say that uremia affects school performance, and that dialysis will improve her ability to concentrate and learn.  Right now all she is learning is how to survive on six hours of interrupted sleep.  And how to make do with only four days of classes instead of five. And probably some cuss words that mom and dad might not otherwise say in her presence.

Her best friend's mom asked her how her night was.  She said, "Oh, you know, the usual."  Like it was no big deal, the pain that wakes you up every two or three hours.  Like it's no problem, trying to sleep while your parents take turns quietly crying in frustration.  Like having a ginormous air mattress taking up all the available floor space in your new room is just an alternative decoration scheme.  Like never being able to attend or have a sleepover again is perfectly okay.

Dear God, give her her life back.  Please.

DeeDee

Week Twenty.....Machine failure

Last Thursday (I think it was Thursday.  Sleep deprivation makes it tough to tell.), the dialysis machine announced as I was setting it up that it had failed "The Bubble Valve Test."  It advised me to push the "Okay" button to acknowledge this failure and to re-run the test.  I can tell by the sound of the machine that SOMETHING isn't working because instead of groaning and creaking it's peeing into the drainage container (oh, this machine is quiet, but it still makes plenty of identifiable sounds LOL).  I got the same message and instruction several times over without having the machine make any reasonable suggestion for how many times failing The Bubble Valve Test made it a bad idea to proceed.  But about the fifth time, I figured it was time to pull the cartridge and set up again.  Well, it seemed like time to ME, but the machine would not permit me to pull the cartridge.  So  I powered off, started over, and it still would not allow me to remove the cartridge, and I still couldn't pass The Test.

Time to call hubby.  He, of course, repeats all of the above.  While he is frustrating himself, I find the manual, find the list of failure warnings, and confirm that warning 30.1 IS indeed what it claims to be. Sadly, however, the manual also does not give any advice about what to about said warning. 

Time to call tech support (they are starting to get to know us LOL).  We discuss the problem, while hubby continues to randomly fiddle with the machine.  Since the thing is peeing instead of setting itself up, he clamps the pee tube (yellow clamp, get it?) and suddenly we are no longer failing The Test. 

Tech support is mystified, both by the failure of The Test and the inexplicable resolution of the problem.  They recommend that we remove the cartridge (which we now CAN do now that we've PASSED The Test).  Well, this goes on, and on, and on and finally, after burning through several days' worth of supplies, Tech support decides that the machine just isn't working.  So they offer to FedEx us a new one by morning, with supplies to go with it.

Hubby and I burst into laughter.  Tech support is utterly dumbfounded.  You see, they don't really know where we are, and they are in Wisconsin.  But we here in the Northeast are in the Flood that floated Noah, and we can't even get to a store for a loaf of bread, let alone a truck with a pallet full of supplies.  The National Guard is evacuating our kids from their low-lying homes, the airport is closed, and there isn't an open bridge anywhere in our two-river city.

Nothing daunted, Tech support says that if worse comes to worst, the National Guard will help them.  Dang, I feel kinda important!

It took a day and a half instead of half a day. But they did it. And I finally figured out what the bubble valves were.

DeeDee

Financial Alternatives.....

With the grim financial information that we have gathered, we have obviously come to the conclusion that we need to do some serious work on balancing the budget.  I don't know anyone in any profession who can cough up an extra $2900/month for any length of time.

I am still disabled.  So I am unable to pick up extra work, which would actually come close to closing that gap.  Hubby is really really needed at home to take care of babygirl so I can continue my almost-full-time work and maintain our health insurance. So we have no immediate way to increase income.

So...cut expenses.  We have already started this process.  We live in a two family house and have been using it as a one family, and are rapidly prepping it to return to two family status.  This will increase our income by $700, and decrease our expenses by $200 (one less power bill).  We are negotiating with our insurance.  Turns out that if you argue a bit, they decrease the copayment for out-of-town specialists (if we don't have one like it in town) and dialysis to $25, so that decreases dialysis costs from $2250/month to $750, and saves us over $100/month on doctor visits.  They will also pick up $900 of the $1000 copay for the surgery, eventually.

And, in two months, she will qualify for Medicare, which will pick up all of our dialysis costs!  Whoohoo!  So we have to hang on, fight, argue, fax, keep copies of EVERYTHING, document, document, document.

And survive.

DeeDee

Ongoing dialysis struggles......

Peritoneal dialysis has been a struggle for our daughter from the start.  Each and every night since we started home dialysis (was it really August 22?  I must redefine "eternity") she has awakened numerous times per night in pain from the suction of the fluid removal part of the cycle.  We had permission to take two nights off this past weekend, and even though we didn't go camping as planned, we took those nights off anyway. 

Restarting was less painful.  I think the days off allowed for a bit more healing.  Right about now would have been the surgeon's first preference for using the tube anyway.  But remember what I said about wondering what we'd do if the power went out?

Well, we found out this morning. The machine misread something about a bag clamp, and at 4:30, after trying everything the manual said, I had to call the company hotline. They suggestioned  all the things I'd already tried (maddening when you've been listening to an alarm for half an hour already) and then told me to power off and start over. That didn't work either, so we were told to disconnect her and attach a gravity drain. Well, I have 5 boxes of drain tubing (which we don't need). Three boxes of drain bags (which we don't use and won't work alone for this purpose). But we apparently lack the little blue hickeydoodle that allows us to hook her up to a gravity drain. Oh. 

So we move on to the on-call nurse. The kid has 700cc's of fluid in her belly right now. The on-call nurse asks if she can handle that. Huh???? Oh, you mean when she's AWAKE??? Hard to say since she is never awake and upright during this part of  her treatments! She always awakens on empty, not full.  Nurse tells us to unhook her as if the treatment were done and leave the fluid in.  Fortunately, she has an appointment at the dialysis center today, so they can drain her out there.  Hopefully they will fill hubby in on what to do next, and we will get it all sorted.

And I was SLEEPING. She had only awakened once during treatment due to pain, instead of hourly as she had been doing. Dammit. I really miss sleeping!

DeeDee

Week Nineteen - Financial Reassessment......

I don't think it's possible to plan ahead for a medical disaster of epic proportions.  I think that everyone knows that having health insurance is a good idea, but there is no way for anyone, layperson or otherwise, to be able to think up all of the questions that would need to be asked for every possible disease scenario.  Cancer?  Heart disease?  Rare pediatric illness requiring input from several hospitals?  How could anybody know what they might or might not be covered for for diseases they may or may not get?

Here's the general gist of how OUR plan works per visit (yours, of course, would be so different as to make this discussion almost irrelevant except for a 'heads up' about what you don't know):

Our doc: $20
Our in-town walk-in or associated specialists: $25
Our local out-of-town secondary specialists: $75
Tertiary specialists participating in our insurance: $75
Proceedures (surgery, xray, lab etc) done by local specialists: included in office visit
Proceedures done by secondary and tertiary specialists: $1,000 (yes, per visit)
Copayment for dialysis: $75 per treatment (and we "treat" DAILY).


So here's the general gist of how that works out in dollars and cents for our budget:

In December I was hospitalized and transferred to an out-of-network local hospital ($100 for ER and admission, $1,000 for other hospital)
From November to now I have not had one month go by without at least one doctor's appointment for me, all local ($45/month minumum)
In February, hubby had surgery ($25 for surgeon, $75 for anaesthesia, $45 for 2 preliminary doctor visits, and $300 in $25/visit copays for PT)
March, same for me, with slightly less PT
Don't forget dental visits for kids and us ($300) and glasses ($300)
Starting in April, no fewer that 2 visits per week with somebody somewhere for Babygirl, usually not local ($150/week)
Surgery $1,000
Dialysis training week ($75/day = 300)
Daily dialysis from August 22 - now = $900.
Ongoing dialysis costs: $2,250/month.

Current outlay for health care (not counting what I actually PAY for the health care) since November of 2010:

Roughly $6000 in out-of-pocket costs.  And I forgot medication copayments, increased grocery costs to manage Babygirl's horrible diet, gas costs for the frequent 150 mile/round trip to the secondary center, and mileage and tolls for our trips to the tertiary center.  That's all well over $650/month, and that's about to increase due to the daily dialysis to an incredible (drum roll, please....) $2900/month.

Add to this that I've been disabled and on part-time work since mid-December. I am almost out of sick time, and I had 1000 hours banked as of last November.  I also used to work a couple of days a month in the ER or walk-ins for and extra few hundred dollars/month, so that is gone, decreasing our monthly income even more.

I feel a certain nausea thinking about this. No wonder Pollyanna is having such a hard time!

DeeDee

Optimism with a Capital O......

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

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

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

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

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

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

DeeDee

Hurricanes.......

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

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

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

I'm off to bed.

DeeDee

Survival Mode.......

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

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

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

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

I am totally punch drunk.

Lord, we need that kidney.

DeeDee

Certified.....

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

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

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

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

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

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

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


DeeDee

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

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

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

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

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

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

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

DeeDee

Out of choices......

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

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

DeeDee

The new room

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

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

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

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

DeeDee

Letter to God

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

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

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

7/19/11

Dear God,

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

Love,
Babygirl

PS Love you too.

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

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

DeeDee

Week Seventeen - The First Surgery

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

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

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

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

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

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

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

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

Lord.  Please.

And we have dialysis training next week.

DeeDee

Week Sixteen - The Beach

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

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

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

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

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

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

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

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

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

DeeDee

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

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

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

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

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

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

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

And this is where we REALLY want to go.

DeeDee