The Kindness of Strangers......

While we were camped out at the hospital in  Philadelphia, our biggest expense was meals.  I have to say that the CHOP cafeteria was reasonably priced.  And I also have to say that they had honest-to-goodness good food.  You can get made-to-order omelettes.  Fresh Chinese.  There's a section that does ethnic food - Lebanese one day, Indian another.  There's a deli, a salad bar, a burger section and even a sushi bar.  But it adds up quickly.  I can't WAIT to see my bank statement, full of purchases from $3 - $20.

This could have been much worse.  You see, my sister-in-law has been sharing Babygirl's story with her friends, family and colleagues.  And the story apparently touched a lot of hearts.  So.....

The day we got out of the PICU, she turned up with an entire Super Bowl Party (transported from the parking lot entrance to our room via wheelchair! LOL).  The centerpiece of this was an absolutely enormous pan of homemade lasagna given to her by a friend.  This was a bigger blessing than simple food.  It allowed hubby and I to stay with Babygirl during a rough evening without having to decide who would go eat when.  It saved us at least $20 in meal costs.  It allowed us to celebrate the Super Bowl with family, as we would have at home.  And I'm pretty sure the huge pan of leftovers improved our bonding with the hospital staff!

After we were discharged, we opted to stay at my SIL's house, since it is about 160 miles closer to the hospital than ours.  One of her friends (okay, technically not a stranger since we already actually know her!) handed her $100 to offset grocery and gas costs.  That same friend brought us a delightful homemade vegan dinner (I LOVE lentil soup, and this was different than my usual recipe). 

We had dinner provided for us for six days, and we had to turn down some.  Each meal was thoughtfully and lovingly prepared, and most were from people I will likely never meet. It allowed us to focus on Babygirl's healing and not meal preparation.  It makes me truly teary-eyed to think about it.

This doesn't include a neighbor who decided that  she would bring dinner once a week while Babygirl was on dialysis.  EVERY week.  Y'know, I really LIKE turkey meatloaf! 

Aside from the cast of thousands that is my own household, feeding people has never been my ministry.  In the rare times in my life when I've needed a hand it's been close friends and church members who have brought a meal, and I've done the same once in a blue moon.  I need to rethink this, perhaps.  I never really understood how much all of this means.  

When things calm down a bit and Babygirl is back in school, I'm going to see how I can pay all this forward.

DeeDee

Week Forty-three - Home At Last......

At this time two weeks ago, we were sitting on "the call."  We still weren't 100% sure it was THE call, but we were ready, we thought.

I honestly think we were well prepared in many ways.  The dry runs led to the production of lists, and the lists made packing more efficient, and more thorough.  The only things I can think of that should've been on the lists that weren't were socks for Babygirl (not a huge problem, she's the only person I know who adores hospital socks!), and portable food. 

We were prepared, mentally, for things to go badly - as well as one can prepare for such things.  We were pleasantly surprised by how uncomplicated it all was, despite a couple of lab results that had my heart racing (her liver is doing better, thank you).  

And now we are adjusting.  I sat at my computer last night, suddenly startled by the fact that I had not set up the dialysis machine.  And then delighted by the fact that I didn't need to! When the dialysis supply people come and take away all the leftovers and the machine, we will have an empty closet, as clear stairwell, free space for hanging Babygirl's clothes and the ability to re-stack the bunk/futon.  She is contemplating rearranging her room.  It's awesome.

So now I need to go to the grocery store and restock, and I get to include a LOT of food that Babygirl has not been able to have since last April. 

We are having pizza for dinner!  Whoot!

DeeDee

The Problem With Knowing Too Much.......

We got Monday morning's blood test results late Monday afternoon.  Creatinine, 0.7 - wonderful.  Tacrolimus level, 5.5 - not great but rising slowly so no change in dose.  Potassium and phosphorus and bicarbonate - all better than acceptable.  Liver function - oh dear.

When liver function panels are drawn there are six to eight tests depending on the panel.  Babygirl had two test elevations, both well over three times the normal range.  The nurse questioned me at length about her medical history (again) without shedding any light. Her liver is more than a bit irritated about SOMETHING.  But what?

First, let me make it clear that there is no real connection between liver and kidney function.  The kidney itself is functioning very well, so y'all can take a deep breath and relax about THAT. However.....

The liver function abnormalities could signal the start of some interesting problems.  And for those of you not in the know, "interesting" is the very, very last thing you want to be to your physician. The list of potential problems ranges from the benign to the frightening, and I have had that list flying around in my head since Monday afternoon. The provider who called to give me the results told me that the entire team was meeting on Tuesday AM and that they would discuss Babygirl's labs and make a plan.  She said they'd call if they needed us to come in early for additional testing.  There was no second call.

I wish I had asked her to call me either way.  It's very likely that it wouldn't cross her mind that I'd be MORE frightened than a non-medical parent. The team regularly assumes that I have more knowledge than I have, and I have to keep reminding them that I have never seen a kid like this in my practice, and my knowledge of the specialty is 25 years out-of-date.

Here's the list of the things that I know could be causing trouble with her liver:

1)  The donor could have been in an undetectable stage of hepatitis and passed it to Babygirl.
2)  Babygirl's old CMV infection may have reactivated.
3)  Her liver may be unhappy with the antibody/white blood cell combo it has to clean up as a result of the meds they gave her in ICU.
4)  Any one of the medications she is on for anti-rejection or infection prophylaxis may be irritating her liver.
5)  Something happened to the blood flow to her liver during or as a result of surgery.
6)  Something unique to transplant recipients that I am totally unaware of could be happening.

Doctors prioritize problems in two separate ways.  We always have two mental lists, and both prioritization lists have the same items, but the order is different.  Based on available data (symptoms, to start with), we order the potential causes of a problem from most likely to least likely on our first list..  On the second, we order the SAME items from most deadly to least deadly.  For example, if you are having chest pain, your doc's first list might have bronchitis, pneumonia and heart attack.  On the second list the order would be reversed, meaning the doc would have to make mighty sure that there was no possibility of heart attack before moving on to the likelier (and less deadly) diagnosis.

Sad for me is that although I can guess what's on the list, I don't have any idea how to prioritize it.  I know what's terrible (hepatitis, CMV).  I think I know what's likely (medication reaction).  I'm pretty sure they eliminated the deadly (surgical accident) with her ultrasound prior to discharge, and it seems to me she'd be pretty desperately ill if that were the case, but I DON'T KNOW.  And worse yet is the possibility that I don't yet know what I don't know (see #6 on above list!).

This entire line of thought is completely nauseating.

My brain needs an off switch. 

DeeDee

Let's Suppress the Immune System!........

Every once in a while nearly everybody has one of those, "I really didn't think this through too well..." moments.  Like when my brother, holding a bag of frozen peas at the top, used a letter opener to cut the bag.  Completely across.  We had to pick a new veggie for dinner, and I was finding peas in corners for weeks.

Some parts of kidney transplantation feel a bit like this.  The good news is, we have a working kidney!  The bad news is, we have to make her body not notice that it's new! While she was in ICU they gave her medication to a wipe out a large percentage of her infection-fighting white blood cells, and  now we are suppressing the rest of her immune system with three really toxic drugs, all to make the new kidney "invisible." 

For the kidney this is a great idea.  If we fail to do this, her body will recognize that this is not her original kidney, and do it's darnedest to kill it quickly.  For the kid, this is NOT a great idea.  If her immune system can overlook two pounds of fresh kidney, it's also likely to overlook a few small viruses, some bacteria, and a fungus or two. If it does, she gets sick.  Really, really sick. Maybe deathly sick.

For the time being we are avoiding exposure to new germs.  We don't go shopping, won't go to the library, turned down an offer (difficult as you can imagine it was!) to tour the Three Stooges Museum.  A trip to the local pharmacy for lip balm (after all, she can't share MINE anymore!) required extra layers for warmth and a face mask.  We timed the trip for ten AM Sunday to avoid crowds, and succeeded.  I am teaching Babygirl to spell all her meds, and to learn what each of the nine medications are for.  Eventually she will learn the doses as well, but since the doctors are still adjusting doses, I'm waiting on that.

The hardest part of all of this is not teaching Babygirl to be careful.  It's not teaching her about her medications.  It's educating everybody around her!  Her school wants to do her "home teaching" AT THE SCHOOL, or at the local library.  Seriously?  We have had several kind invitations to go out for dinner.  Um, thanks, no can do.  It's a bit difficult to wear a mask and eat at the same time.

This is one of those things that I am discovering is a lay person-versus-medical person thing.  Like the "Are BOTH of her kidneys failing?" question (yes, of course, you only need one functioning kidney and she has neither), the "Can you take your immunosuppressed kid out to dinner?" question seems to have an obvious answer to ME that is clearly not obvious to everybody else.

Three of her new medications are for infection prevention.  But there is no way that only three medications can prevent thousands of infectious diseases.  Her vaccinations help.  Her innate good health is certainly beneficial.  But the single best thing we can do for her is to keep her away from any NEW germs.  And for that, we mostly stay home. 

So stop by, if you are healthy.  Use the hand sanitizer by the door. Bring a meal? Thanks, but check with us about what's okay to eat THIS week, since it has totally changed since LAST week! And leave the little kids home. They are adorable germ incubators on feet.

DeeDee

Week Forty-two - A New Life.......

We are still stunned. 

We never really expected to get a new kidney so quickly.  Both transplant teams told us to expect long waits, although the Philadelphia team was more optimistic.  Right now we are at our home-away-from-home with my sister-in-law near Philly.

Gone are the nights of fighting the dialysis machine.  Babygirl has been sleeping a LOT, and I don't think it is just recovery from major surgery.  Six months of interrupted sleep have taken their toll on all of us, but on her most of all.  She had learned to cope, clearly, but she was awakened twice per night by pain, each night from August 22nd to February 2nd.  That's a long time for a child to be expected to think that pain is normal.

Gone are the mealtime pills, the bigger-than-a-prenatal-vitamin pair.  We'll have to collect the leftover supplies from school, her  best friend's house, and the Pastor's pocket.

Gone the weekly shots of Erythropoetin, since the new kidney makes its own supply.  This means no anemia, and less fatigue.

Gone will be the severe gym restrictions.

Gone, the monthly trips to the dialysis team.  We'll miss the team but not the trips!

All of this is unimaginably fabulous.

And here's what we get instead:

Babygirl is on three anti-rejection meds (eighteen pills per day), one antiviral (two pills), one antibiotic (one pill), and one antifungal (swish and swallow four times daily).  She is on one medication for high blood pressure (one pill), one antacid (one pill), and her usual asthma meds (one pill and an inhaler). The majority of this is on a twice daily schedule, but it MUST be done every 12 hours without fail, for the rest of her life. We have already signed up at MyMedSchedule.com.  They keep track of your medications, remind you to call for refills, and send us four text messages daily to remind us to remind Babygirl to take her meds. It's free,and anyone can use this service. Hubby and I are thinking about using it for our own meds!

For the next six weeks, Babygirl is off school.  I will be sending them an email to let them know we need a tutor starting next week.  Babygirl can't attend church, go to the mall, eat at a restaurant or hang out with friends.  We will be seeing the transplant team Mondays and Fridays, and we can't take the train. The Philly transplant team is negotiating with the local team to see if they will take on one of these visits each week.  If not, we will clock over 700 miles per week in travel.  If they do, it will drop to 500.  God bless Rhonda the Honda, our 1995 Odyssey.  Reliability has nothing to do with age!

If all goes well, the visits drop to weekly, then monthly.  At the six month mark we drop the antiviral, and I think the antifungal.  The antibiotic goes bye-bye in a year, and the doses on the immune suppressants will decrease over time as well.

Adjusting to the changes doesn't seem too daunting this week.  After all, Hubby and I are both here, both off work, and able to be 100% attentive and vigilant.  Next week we will both return to work.  Babygirl will be home with her older sister.  We will work on the new life schedule.  We will do, as always, whatever it takes.

For heaven's sake, don't take us off your prayer lists yet! And sign your organ donor cards.

DeeDee

February Eighth and Ninth - Life is Better......

Yesterday all her numbers stabilized.  Medication doses are still being adjusted. One of her meds is very food dependent, so we need to make sure she is eating consistently before each dose. 

I've been maintaining my sanity by trying to get in at least five hikes up and down the forty-eight Atrium steps each day.  Yup.  One before and after breakfast, one before and after lunch, and at least one other random trip.  I can now get up from a squat without any problem LOL.

Yesterday the hospital hosted a Pajama Party in the Atrium.  Babygirl made a fleece pillow, and a friendship bracelet (I made one too!).  She's been up and about, not happy about wearing a mask when off the floor, but adjusting.  The prednisone is not making her cranky, but she is HYPER and she's eating about six meals a day.  Breakfast today was: a bacon/cheese omelet, chocolate chip pancakes, cinnamon-raisin bagel with cream cheese, apple juice, coffee and a popsicle.  Since then we have been to the coffee shop for a muffin and more coffee.  And we will order lunch in about a minute.

Later today, Andy Grammer will be in the Atrium for an interview on the hospital's radio station.  And later still, "Sam" and "Emily" from Twilight: Breaking Dawn will also be here - pretty exciting stuff!  I am truly impressed by how many stars are willing to put in a free visit to a children's hospital when they are in town.  Selena Gomez has been here twice, apparently.

But the best news of all??? We are being discharged tomorrow, less than a full week since we arrived. The nurses tell us that Babygirl has set the bar high for all other transplant recipients.  She is tolerating the meds, not taking anything for pain in the daytime, and overall continuing to maintain her "healthiest sick kid you'll ever see" rep.

I cannot, in any words, express my gratitude to Children's Hospital of Philadelphia and their excellent staff.  And I am unable to thank the hundreds, maybe thousands of prayer warriors who have "stood in the gap" for my baby.  But more than anything, I give my undying thanks to her donor and her family, for making the sacrifice that made all this possible.

DeeDee

February Seventh - The Fourth Day.....

Some of you have already caught the brief word on Facebook that Babygirl had a bit of a rough day. The honest truth was that it was ME who had the rough day.  As far as she was concerned it couldn't have been better unless she was home.

Cousins came to visit, and spent most of the day entertaining her.  They all had fun - my niece and nephew are the most adaptable teens in the universe.  I do have to say, though, that teenagers and small wheelchairs do not mix well.  No one was injured, the chair is still intact, so all is well.  By the end of the day she was so wound up that she could have turned herself inside out without difficulty.

For me, though, the day had a darker feel.  On day three Babygirl's creatinine was 0.7.  On day four, 1.1.  For those who don't remember, kidney function is exponential.  A shift from 1 to 2 represents a 50% loss of function, and from 2 to 4, another 50%.  So.....any trend in the wrong direction can be ominous.  No transplanted kidney is expected to live as long as the recipient.  Depending on who you're talking to, ten years is good.  But that number tends to be low because it includes those who reject more or less immediately.  They have Babygirl on three anti-rejection meds.  We found one of them loose in her bed this morning, so she missed part of a dose.

To add to this concern she had put on 4 pounds overnight.  That's half a gallon of fluid. She had an ultrasound immediately, which the surgeon said was fine.  Blood work was repeated, meds adjusted.  When all was said and done, there really was no bad news.  At the end of the day, her creatinine was 1.0, so they decided that the truly odd level was the 0.7.

Thank God I had my hair dyed before I came.  It's covering all the new gray.

DeeDee

February Sixth - The Third Day.......

Babygirl is very, very tired of the tube in her "private parts."  They've had trouble finding a tape that will stick to her skin without removing all of it, to hold the tube against her thigh so it won't, um, tug.  It causes pressure.  It is just plain uncomfortable.  Frankly, it bothers her far more than the massive incision does. 

And speaking of incisions, she has three.  One for the new kidney that runs along the right side of her abdomen from above the level of the belly button to the hip bone (for those who care to look up the term, it turns just above the ASIS, the anterior superior iliac spine), where it curves in reverse-J fashion toward the bladder and then a little upward toward the belly button.  This is the one they used to insert the kidney. It's better than nine inches long.  The second is midline, halfway between the belly button and the pubic bone, two inches. This was used to remove the peritoneal dialysis catheter.  The third is to the right, below the belly button and above the left ASIS.  It's where the PD catheter used to exit.

You'd think the big one would be the problem in her mind.  But she tells everybody who looks that it's COOL. It's closed with stitches that are under the skin and covered with a tidy layer of glue - not a speck of any kind of gore showing at all!  It's the one in the midline that bothers her - eight stitches that are going to have to come out.  It had that kind of "inside out" look to it that really rather nauseated her to start with.  Those of us who have seen surgical wounds know you have to evert the skin to make it heal well, and the edges are a bit creepy looking. 

It's the third that actually bothers me the most.  It looks like someone installed an extra belly button off to the left side, and I can see it's going to leave an interesting pucker.  I know that it's because it's the exit of a well-established tunnel, and I know that that tunnel could accumulate some fluid and refuse to close off.  So far it looks amazingly well, though.

None of these wounds is particularly painful to her.  Her greatest complaint of pain has referred to her back and her buttocks.  She is clearly unaccustomed to being in one position for any length of time!

By the end of the day, all of Babygirl's problems were solved for her.  Her central line came out, her catheter disappeared, she pooped and pee'd to great acclaim and everyone on the floor is very, very impressed with her progress.  She has only one IV line remaining, and that is used only intermittantly.

And her day was completed by a visit from Hunter.  He's an extremely handsome young man!  The fact that he's a Golden Retriever only made it better LOL.  The last thing we expected was a visit by a therapy dog, and it was a wonderful way to break the tedium of a day spent with movies and the Disney Channel. 

DeeDee

February Fifth - The Second Day.....

The day began in PICU (Pediatric Intensive Care Unit).  She had done amazingly well to that point, and her only real complaint was that we were starving her to death.  Oh, and the Foley catheter wasn't a high point either. 

By 11 AM, she was eating French toast sticks and sitting in a chair.  By 2 PM they had decided she didn't belong in PICU anymore, and before the Super Bowl could get underway we were in a regular room on the surgical floor.

We had our own party.  CityGirl and my SIL brought lasagna and (praise be to God!) a veggie platter, along with chips and dip.  A good friend (and his fiance) whose Dad was also a transplant recipient sent a basket of goodies, all forbidden prior to the transplant.  Babygirl supplemented her dinner with Hershey Kisses and Pepperoni Pizza Combos.

There was a rocky time in late afternoon when we discovered the oral meds didn't quite work as well as the IV's.  It's been fixed.  I figure if you have major surgery and only cry for about twenty minutes, it's still a win.

We enjoyed the SuperBowl, the commercials, and the half-time show (I missed the bird-flipping, but I saw the Wardrobe Malfunction a few years ago so I don't feel too bad LOL).  We don't care who won, because we already did.

DeeDee

February Third - The Big Day.........

Yesterday my mind popped open at 3 AM. Babygirl's dialysis alarm was going off, I reset it, and went back to bed to no avail.  I went downstairs with a book, read for a couple of hours and fell asleep, and was re-awakened by a random phone call.  I took Babygirl off the machine, got her ready for school and started prepping for my "Day Off".  The plan was to paint.

Two minutes after she went out the door, THE phone call came. Not one of those "she's on standby" calls.  This was the real deal, first in line this time. 

So hubby and I did the Chicken-With-Its-Head-Cut-Off dance, running around, packing, checking lists.  Babygirl hadn't unpacked from LAST time, so that was helpful.  I took a shower (interrupted by no less than THREE phone calls). But we honestly expected a bit more time based on the dry runs.  Not so.

Two hours after the first call, we were told to hit the road.  I had already called the school nurse with orders to not let her eat, and now I called again - no eating, no drinking, and get her down to the health office so I could come for her.  Run to the bank.  Fill the gas tank (see, I TOLD you I wasn't disciplined enough about that!), pick up the kid and start flying to the hospital.

We arrived at 2:30.  They hustled us to a room, ran tests, and we waited.  And waited.  And waited.  They had told us to expect to start to pre-op at 8 PM.  Near as I can tell it took a bit longer for organ harvest than expected, so we hit pre-op about 9:30 and the procedure started at 11PM.  NYCgirl met us at the hospital, and my sister-in-law stayed with us also. 

So what do you do when you are waiting for a life-and-death procedure on your youngest to be completed?  Well, we played Taboo for about 2 hours, burning off a great deal of stress with a lot of nonsense and laughter.  We drank coffee, and hot chocolate, and ate saltines.  Oh, and M&Ms.  And some pita chips. And anything else that fell into our hands that we figured would taste better than our fingernails.

Sometime after 2 AM they came to tell us it was done - much sooner than they had led us to believe.  Another hour and we were in intensive care, where we remain. 

I have to say, these people ROCK.  They aren't willing to let her suffer and scream.  They aren't willing to see us cry.  They aren't willing to let her lie in a puddle because a catheter is leaking. They aren't willing to give up until they get it right.  So kudos to your, CHOP (Children's Hospital of Philadelphia).  You beat the crap out of our local center hands down.

She has a fresh wound that I estimate to be about 9 inches long.  It is clean, doesn't require a dressing and already looks like it's been there a while.  Her PD tube is gone, which makes her incredibly happy.  She asked for her pills to take when she had her Jello and was stunned to be told that she doesn't need them anymore.

It was one of the longest days of my life.  I laughed, I cried, I cussed at recalcitrant traffic lights and pushed the limits of how fast the PA Turnpike police will let you go without a ticket (we passed a speed trap just as a car was passing us - the only one to do so all day.  He got nailed, and we sailed). I read and reread the same chapter of a book.  I updated friends and family with texts and Facebook.

I'm still wondering about the 3 AM thing.  I have no way of knowing for sure when our donor's family made their decision to go ahead.  But I have my suspicions.

DeeDee

Waiting......

We received a call about three hours ago.  There may be a kidney for Babygirl.  She's third in line this time, and they won't be able to let us know until after midnight. 

Six hours is a long wait.  I have actually packed, for myself and for her. I went and topped off the gas tank, and got some cash in case Curlygirl has an emergency when (if) we are gone. I went to Dunkin Donuts and cashed in the free coupons we got for donating blood, since they'll expire while (if!) we are gone.  Hubby is unable to consider packing.  This time I am calm, and he is emotional. 

Babygirl and I are scheduled to go to the local dialysis center tomorrow morning.  My mom has a doctor's appointment tomorrow afternoon, and as she spent the week in the hospital it's imperative that she go. I took the rest of the week off so I could work on painting in the house. Hubby needs to work on the kitchen.

These waits are pauses.  Like the dead silence that can suddenly descend on a room full of people, inexplicable and unnerving, these phone calls put a halt to every other purpose we might have. We have to carry on the routine, setting up the dialysis machine as if she will need to stay on it all night, not entirely sure how we'll shut it off if we need to leave. 

Should we go to bed? Stay up? Pack a lunch??? There is no limit to the absolutely ridiculous things that run through my mind.  No end of ways to avoid thinking about the dangers of the surgery, the suffering she'll go through, the grief of a family losing a loved one, the desperation of the people who are both ahead of and behind us on the list.

I met a man last week whose fourteen-year-old son died last month of Chronic Kidney Disease.  His little boy didn't survive dialysis, didn't survive long enough to complete his Make-A-Wish, or get his new kidney.  On my way home later that day I had to pull off the road and cry.  And go back to begging, "Oh please God, not us!  Not that!"  And the gentle touch on my shoulder, and the Voice saying, "You are praying for the wrong person." 

Of course I was.  I still have my Babygirl, the healthiest sick kid you'll ever see.  And that father - he has a huge empty hole where his boy once lived. 

I think, perhaps, that that awareness makes me a little less anxious about this 'maybe' kidney.  As much as I want it to be ours, I want it to go to a kid like his son, one who truly can't wait.  Not that I want Babygirl to wait until she is desperately ill, but I know she can still wait a while and be safe. 

And so can I.

DeeDee

Week Forty - Miracles Happen........

When we adopted our daughter from Guatemala ten years ago, we thought that the years of paperwork were behind us.  If anyone ever told us that we needed to do more, I can't recall.  I vaguely recall someone suggesting that re-adopting her in the United States would be a good idea because it would be easier to get copies of her birth certificate.  But I never got around to doing it, and never really thought it mattered at all.

When you adopt a child, you get a whole new birth certificate.  That certificate implies that you have actually given birth to that child.  So Babygirl's current birth certificate lists me as her mother, just as her original birth certificate listed her birth mother.  It also implies that I gave birth to her in Guatemala twenty-three months BEFORE I actually ever met her.  She was granted a visa to come into the US and given a Green Card (which, by the way, is not green). 

When Babygirl was diagnosed with kidney failure, we were told that once she either started dialysis or received a transplant she would qualify for Medicare.  Yes, that is ordinarily for the elderly, and for disabled adults.  But it has one significant exception in that everyone on dialysis qualifies for coverage.  Well, almost everyone.  Illegal immigrants are, rightly enough, excluded.

And it turns out that Babygirl, and her sister Curlygirl, are not US citizens.  And it turns out that since their Green Cards and Visas have expired, they are not exactly legal either.  The fact that I legally adopted them in another country is irrelevant.  I was supposed to file some paperwork with some agency somewhere that would have made them citizens.  With Curlygirl, it really is a matter of simple paperwork because of the type of adoption we did.  With Babygirl, we must do a full re-adoption in the US to make her a citizen.  And until we do, she absolutely cannot get Medicare.  And until we get Medicare, we owe $75 per DAY for dialysis, from August twenty-second until now.  That's 160 days so far.  That's $12,000 and rising daily. 

When we found this out, we started the adoption process.  And since I adopted her when I was single, Hubby is going to adopt her too, and legally become the Daddy he's been since he went with me to Guatemala to bring her home.  This is not a short process, and we are running against a ticking clock of limited appeals to Social Security for extended time.  We're on the final countdown, and less than thirty days to go to produce a US birth certificate (one that implies, I assume, that I gave birth to her HERE).  And we don't yet have a court date.  If we don't succeed in the allotted time, I have to re-apply and start a new clock running, and we will have to pay all bills due to that date, around $15,000.  If we DO succeed, Medicare will cover all dialysis-related bills going back to August twenty-second, and we will owe nothing.  Our anxiety has been steadily mounting.

So I am at a loss to explain why, when I opened the mail on Monday, it contained a brand new Medicare card for Babygirl.  I'm not calling anybody to find out why they sent it.  I'm just faxing a copy to everybody we owe medical bills to, and waiting to see what happens next, and proceeding with the adoption as if the urgency remains in case they really didn't mean it. 

I admit I cry easily these days.  But I was too stunned to cry over that card.  At least at first. 

DeeDee

Week Thirty-eight - 'Possums and Poetry........

I've mentioned my Bible study group before.  We are a small group, around eight people on average.  We actually read a devotional article or poem each week and then discuss it.  Eventually.  We also share our joys and sorrows, and whatever story of our lives is in the front of our minds at the moment.  And we laugh.  And laugh.  And laugh some more.  What we share together is held in confidence, a sacred trust.  It is a safe place to go and feel loved and supported.  And did I mention that we laugh? Frequently any other group that is meeting in the church comes to tell us to close our door! 

Because of the confidential nature of our sharing I can't really tell you the story of the 'possum. Or why someone observing "Hey, it's better than a 'possum!" could bring us to tears of hysterical laughter.  I think that any family, small group, or pair of BFFs has a phrase like that - the one that makes everybody in the room crack up.

And the blessing of such a group is that there is always a shorthand.  I can walk in, look around, and see who has had a good or bad week.  As they can see in my face.  That sort of knowledge is a precious gift, rare as rubies and far more beautiful.

And what does this all have to do with Babygirl, you might ask?  Nothing.  Nothing except that I can rely on these women to help keep her mother sane.  I'm incredibly grateful for the love and support of these friends.  They rejoice when we have a good week, like this past one.  And they weep with me when I weep. They show up with food, and help decorate for baby showers, give up spare couches, and help each other understand the deeper meaning of the poems of our lives. 

I am richly blessed.

DeeDee

Week Thirty-Seven - Keep the Damned Phone ON!!.......

Somehow I walked out the door today without my cell phone. I didn't miss it until after lunch, and I'm not sure why I noticed then.  It actually usually lives in my bra, and I'm so used to it being there that it's mentally "invisible," like a wedding ring or your glasses. 

Even when I noticed I didn't worry about it much.  The transplant team has a list of numbers, and both times when they have called I didn't have my phone on me (once I had just gotten out of the shower and once it was on the charger upstairs), and both times they called Hubby's phone. They also have our home number, my work number, and family numbers as well.

But when I looked at our answering machine today when I came home there was a call from BOTH transplant teams!  I nearly stopped breathing.  The one from the local team turned out to be a question about  Babygirl's current insurance.  Phew.  But the one from the tertiary center was, "Please call us back within an hour."  Ouch.  Too late to meet that deadline.  Hubby was ready to cry, and I was not too happy myself.  No one had called HIS cell - and he had it on him all day.  So I went hunting for mine, and found that I had SIX voice mails. 

Turns out three of them were irrelevant - Mom wanting to go shopping, somebody asking about tomorrow's baby shower, a call from our local doc.  But three were from the tertiary transplant team.  The first two were as cryptic as the one on the answering machine.  But the third finally revealed the point of the phone calls.

It was NOT a kidney. Babygirl had blood drawn at the dialyis center Wednesday, and I forgot to take a shipping label with me, so we brought the blood home, added the label and hiked it to our hospital for pick up.  Apparently the discrepancy between draw site and pick up site caught the lab's attention, and they wanted verification of the dialysis center's information.  Well, we missed that call, so I'm guessing they tossed the blood and we will need to go get a new one done next week.  Inconvenient, uncomfortable for Babygirl, but not as bad as missing a "We have a kidney for you" call.

I am sure that the transplant coordinator will have something to say to me on Monday.  And whatever it is, I agree.  I CANNOT believe I walked out the door without that phone.

DeeDee

Time to Update Things......

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

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

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

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

Thank all and any for your support.

DeeDee

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

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

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

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

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

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

DeeDee

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

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

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

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

Sigh.

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

DeeDee