Thursday, February 23, 2012

Week Forty-four - Isn't There a More Respectful Term.....

than "HARVEST"?

Citygirl is in her mid-twenties, like Babygirl's donor was.  As a mom, I can only dimly, painfully imagine losing her.  Like all of my girls, she is incredible.  She's loving, hard-working, kind and funny.  She's always been the one who brings a dozen friends along to wherever she is, be it home, school, or the St. Patty's Parade.  She's the kind of person who throws a birthday bash for a good friend.  Especially if that friend is turning 90.

But if something DID happen to her, she'd want me to have her organs donated.  I think she's always thought it was a good idea, but since Babygirl's illness, it's become a solid idea. 

And I would.  I would let someone "harvest" her organs. And that word makes me incredibly queasy.  I know that they have to call it SOMETHING.  And I can't honestly think of a term that would make me feel better about it.  Recycle?  Reuse?  I think I mind "remove" less. 

There is something about "harvesting" that feel inappropriate to me.  Something mechanical; something, well, plant-related that should have no bearing on THIS reality.  Something cold-blooded, calculating, scheduled.  Something I definitely do not want done to someone I love.

People say things like, "Well, at least it gives death some meaning." Or, "At least you know part of your loved one lives on."  I'm guessing by how my heart feels as I write this that those thoughts would be cold comfort, indeed.

Yet someone made that choice so my child could live.  Someone decided, in the most stressful moment of their lives, to do the impossible.  Maybe Babygirl's donor had told her family that that was what she wanted and they honored her choice.  Maybe they had never talked about it. 

I know that I have told my family for years that if anything should happen to me, I want to be an organ donor.  But I know that I have not, until now, had a discussion with my now-adult children (except Citygirl) whether they would like to be donors.  And I need to do this.  God forbid anything should ever happen to them.  EVER.  But......

It's easier for me to imagine following someone elses' instructions than having to wing it on a decision like this.  It would be much easier to deal with the concept of "harvest" if I knew my child was really, really convinced that it was the thing THEY wanted more than anything.

I don't know much about Babygirl's donor.  And likely I never will.  In time, I will write her family and tell them exactly how precious their gift is to us, but that letter must perforce be anonymous.  I will tell them how we never really saw how sick she was until we got her back to healthy, and that would never have happened without them.  I will tell them of all the things she can eat, the things she can do, the places she can go because of their sacrifice. Cold comfort though it may be, I will offer them what I can.

Sign your organ donor card. And TALK about it.  Tell your family that it is what you really, really want.  Make their choice easier. Go here: and fill out whatever forms your state requires to make it obvious that this IS what you want. Like the bumper sticker says, "Don't take your organs to Heaven.  Heaven knows we need them here."


Monday, February 20, 2012

The Things We Learn....

Babygirl has learned a LOT since her transplant.

She can spell 'tacrolimus' and 'mycophenylate' and tell you what they do.

She knows that prednisone makes you hungry enough to cannibalize yourself.

But the most important thing she has learned?  Never, EVER burp into your face mask.


PS: What have YOU learned today? LOL

Saturday, February 18, 2012

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.


Friday, February 17, 2012

Random Acts of Kindness.....

Throughout our journey we have received many, many kindnesses, and I plan to dedicate a post to that theme later. 

But for now, I'd like to direct your attention to this blog:

This is an amazing story of what one person can do.


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!


Wednesday, February 15, 2012

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. 


Monday, February 13, 2012

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.


Saturday, February 11, 2012

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  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.


Thursday, February 9, 2012

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.


Wednesday, February 8, 2012

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.


Tuesday, February 7, 2012

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. 


Monday, February 6, 2012

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.


Sunday, February 5, 2012

February Fourth - The First Day With the New Kidney.....

It's really hard to stay where one day starts and the last leaves off when you start at 3 AM and go through to 8 AM without really stopping.  I discovered that I can (but shouldn't) sleep with my head on the siderail of a hospital bed holding a little girl's hand.  I discovered that even under the influence of narcotics and residual anaesthesia, Babygirl has quite a good grip.  I discovered, humbly, just how tough my kid is. 

I learned that it is incredibly frightening hearing someone page "CODE BLUE" for the room next to your child's. I learned that if your kid is hungry enough, chicken broth counts as a meal, and a popsicle, dessert.  For three meals in a row. 

I learned that the doctors here are the smartest.  The nurses, the sharpest.  The staff, the most caring - and I work in an institution known well for it's culture of caring.  I learned that when there is no choice left, trusting God is really not that hard to do. 

I learned that the prayers, love and support of family and friends is beyond all price, and that help comes from unexpected places.

Thank you all for all you've done.


Saturday, February 4, 2012

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.


Friday, February 3, 2012

Week Forty-one - Let's Make-A-Wish........

We finally connected with Make-A-Wish shortly before Christmas.  The initial phone call was interesting, to say the least. 

They wanted to know some basics, like Babygirl's age and diagnosis, and how many people would be involved in the Wish. They wanted to know if she is aware of her diagnosis (well, it's tough to keep it a secret when we have to hook her to a machine all night every night, but I understand why they are asking). And then the heart-stopper: "Is this a Final Wish?"

I'm really stunned by the number of times I've been completely blindsided by a question, a piece of information, or a random thought.  I keep thinking there can't be anything left that will leave me breathless, speachless. But there always, always is.

"No.  We have time." At least, I hope we do.

Last night the Wishmakers arrived at our house with a lovely package for Babygirl - Valentines socks, pencils, journal and erasers.  One of them went off with Babygirl to explore with her what she might Wish for.  She had four questions.  "What do you Wish to be?  Where do you Wish to go? What do you Wish to have? Who do you Wish to meet?"

She really doesn't have an answer for the first question.  For the second, she has an entire list! She wants to go to France, see the Eiffel Tower and EuroDisney and the Riviera.  If she can't do that, London.  If not that, California, to see the redwoods, visit cousins and maybe hit Disney. If we do that I'm suggesting an RV rental since we love camping and it would allow us to tote her dialysis machine with us.  The third question:  a horse.  The forth?  Selena Gomez or Josh Groban.  (Too bad it wasn't Adam Sandler, we hear he does awesome Wishes!).

They asked her to narrow it down to one Travel Wish and one other Wish.  So - Paris (or California if the docs won't let her go overseas) or the horse.  Yikes. Um, we live in a city.  Yeah, despite that, it's doable.

While Babygirl was off discussing her Wishes, the other Wishmaker was working with us.  The Wish includes ALL travel.  They come, takes us to the airport, and so on.  They asked if we needed luggage.  They asked if we needed a camera!  LOL! Hubby and I really did laugh - we have some really terrible camera karma, so yeah, we DO as a matter of fact need a camera. Do we need a full kitchen?  What can she eat? They'll take care of it all.  They will handle passport acquisition, if needed.

I was impressed by how comprehensive the program is, and appalled by how many kids in our area Make-A-Wish serves.  They told us that they average 6 referrals a week for our 13 county section of the state.  All but two of those counties have no towns of more than a few thousand, and in most, people are outnumbered by dairy cows.  Sadly, we are in good company.

They will contact the doctors, discuss the Wishes with the program directors, and get back to us.