Jorge......

When we arrived at the doctors' office this morning they had a letter waiting for us from our donor's family.

"For you, that received a gift from Jorge:

    Through this letter we want to express that even with the painful experience of having lost our son, we are pleased that you received his precious gifts, because now you can now have a second chance of life.

Jorge was a boy very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy.  And we hope that all these features are in your life, so he not only gave you one gift but all of these too.

With love,
Jorge's parents

PS If you want to know more about Jorge or to communicate with us, you are welcome."

They enclosed a picture.  He was a handsome young man, with curly dark hair and eyes that spectacular yellow-brown that people try to imitate with contact lenses. A sweet smile.  Beautiful eyebrows.

I haven't written yet to thank his parents and I'm not sure why.  I'm glad now that I haven't - we were told Babygirl's donor was a young woman, so his parents would have wondered if we sent the letter to the right place. 

I want to send them an entire photo album, the whole story, a link to this blog and an invitation to dinner.  I want to tell them all about Babygirl and how her life has improved because of the gift Jorge gave her.   I want her story to make it all all right for them....and I know it can't.  It can't possibly.  As sad as I have been for them, I'm immeasurably sadder now that I can SEE what they have lost, and it's still NOTHING at all compared to their suffering.  Babygirl is all of the things Jorge was:  "very beloved, and with a big heart, with very good feelings, cheerful character and with luck and sympathy."  And by the grace of God and the miracle of Jorge's gift, she is still here with us.

Of COURSE I want to know more about Jorge.  I want to hear anything they want to tell me about him, his hopes, his dreams, his gifts and talents.  I want too let them know that he won't be forgotten, ever.  Ever.

I read the letter to Babygirl, and showed her the picture, and suddenly it clicked in her mind.  "He's dead?"  "Yes, baby.  His mom and dad knew he was going to die and decided to donate his organs  to people like you who need them."  "That's sad!"  "Yes.  Yes it is."

It's a lot for a 12 year old to take in.  I'm not sure it's all there yet.  And truly, when all is said and done, how can any of us understand it all?

DeeDee

Donate Life.....

Most people think that signing a driver's license is enough.  But it may NOT be true in your state - it isn't in mine. 

Please go to this website and make absolutely SURE that you are a registered donor!

http://donatelife.net/

It may take a moment's effort, and a stamp.  But it may save at least six lives.

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

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

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

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

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

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

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

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

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

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

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

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

Happy New Year!  God bless us all!

DeeDee

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