The Never-Ending Painting Adventure

I’ve been quite busy with having my home repainted.  It’s amazing how much stuff we’ve accumulated since we last painted 5 years ago.

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The first thing to be painted were closets throughout the entire house.  Now granted, the closets didn’t need to be painted as the paint was still in great shape.  However, it gave me an opportunity to reorganize them all (and of course, I got to use my handy dandy label maker).  Although our house looked like a hurricane swept through, it was so worth it!

I can easily find items in my pantry and my linen closet never looked better.  I donated all my unwanted towels, sheets and placemats to a local animal shelter.  Now I have room to add new linens to match the new paint colors.

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Marielle’s room is FINALLY finished (well, except for a few little odds and ends)!  I only have a few sneak peeks of her room as we are still trying to find space to store all her junk.

Not only did we paint the walls hot pink and most of the trim black, we even painted her vanilla-colored furniture white. Marielle suggested we do black velvet curtains.  But in the meantime, I ordered 2″ black aluminum blinds for her huge window (because we all know how long it will take me to sew her curtains…LOL).

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I’ve been buying and hoarding anything zebra, hot pink and/or black for the last year.  My efforts have finally paid off.  Most of my best finds were at either HomeGoods, TJ Maxx or Marshall’s.  The hot pink lunch boxes were only $3.99 each.  And the zebra canisters were only a few bucks.  Oh and the hat box (which also has 4 coordinating big boxes) was only $5.99!  Score!

Check out this matching doll I bought while hunting for zebra items on Ebay!

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Marielle asked that I stop buying anything with a zebra print on it as she thinks it’s starting to look like a zebra puked in her room…haha!

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Since my darling daughter has a habit of writing on her closet walls (Marielle loves Anthony, Steven, Adam, Nick), we painted black chalkboard paint so we can just erase past boyfriends’ names instead of having to cross them out.  How clever am I?

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Oh, speaking of closets, I caved in and got her 300 hot pink Huggable Hangers.  I absolutely LOVE these hangers (might have to buy them for every closet in the house).  The above hangers may not look hot pink, but they certainly are.  It’s pretty hard to get the correct color when editing photos of a black closet.

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I purchased zebra light switch and outlet covers on Etsy.  Only problem is I ordered the wrong type outlet covers (I need the new rocker type covers).  So I’ll be doing a craft project this week–covering her old white outlet covers with some zebra wrapping paper and a little decoupage.  Wish me luck!

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I found this cool zebra phone at Marshall’s for just $12.99.  Perfect!

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This weekend I spent spray painting different things for her room in gloss black and semi-gloss white.  I had found this neat shelf (once gold) at TJ Maxx for a mere $12.99 last year.  The minute I saw it, I knew if turned upside down it would be a perfect bed crown for my daughter’s room.

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A little black paint and now to find the zebra sheer fabric to attach to the bed crown which I have stashed somewhere in my sewing room…I’ll show you photos of it once I get it hung on the wall over her bed.  I’ve got to figure out a good way to attach the zebra sheers to the bottom of the new bed crown.  Any ideas?

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I hadn’t finished spray painting Marielle’s light pink wicker rolling baskets when those two darn ducks took over the yard.  Yes, they’ve been coming to my yard every stinkin’ day to eat all my Koi fish food.  Any good ideas on how to get these ducks out of my yard once and for all?  It’s getting a little old chasing them around with a broom, KWIM?

lisasiggie

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LUCK OF THE IRISH–MARIELLE CELEBRATES HER 15TH LIVER TRANSPLANT ANNIVERSARY!!!

You look back on who you were fifteen years ago and wonder where you found the strength.  You see the mistakes of a young mother and understand the person you have become.  In celebration of Marielle’s 15th liver transplant anniversary on St. Patrick’s Day, I thought I’d share the letter I sent to her liver donor’s mom which I wrote 15 years ago…just 9 months after Marielle’s liver transplant.

Published December 1994; Re-edited March 2009.

Dear Special Mom:

I have spent many nights thinking about you and wondering how you are doing.  I was told that your daughter was a year old and that she had neurological problems.  The transplant coordinator told me your daughter had a severe stroke which left your little angel with no brain function.  I do know know if this information is true.  I do know that you made a decision to donate her liver and give my daughter a second chance at life. I will be forever grateful of your decision to let her live on in my daughter.  Here is our story:

Please Don’t Take My Sunshine Away

I have put off telling our story because it brings up a lot of pain and other unwelcome emotions. Those I thought were in our corner have disappointed us, while those who we never expected to, came through like never before. I used to wonder why we were chosen to face the impossible, but now am comforted with the answers I have found.

Our story begins on a rainy Friday morning in June of 1993. My husband, Ron, was present for the birth of our daughter, Marielle Lynnaire, by caesarean section. Marielle was put in a high risk nursery for a week, because of my pre-existing condition (Lupus).  Shortly thereafter, she was given a clean bill of health and we brought our little sunshine girl home.

 I look back and think how comical it was feeding Marielle a 6-ounce bottle every hour or so and changing more than 2 dozen diapers a day. My friends remarked, “You wanted a baby,” as if this was normal. I complained to her pediatrician on numerous occasions, but was treated like a nervous “new mom”. At one point I asked him why her stomach was so large. He remarked, “All babies have big stomachs.”

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At 10 weeks old, we christened Marielle. She was dressed in a bright white gown which made her complexion appear almost green. Within the next 24 hours, when she developed a bad cough, I took her to our local hospital where she was examined by an intern. He indicated that she indeed had a slight respiratory infection, but was more concerned with her severe jaundice. The intern ordered blood tests and insisted Marielle be admitted immediately. All the doctors were undecided about her diagnosis, but mentioned that in the worst case, she could have biliary atresia. I knew, at that moment, it would be bad news. You see, when Marielle was born with all of her limbs, I was so relieved, because I thought that my Lupus would deform her (although my doctor assured me it wouldn’t). My worst fears were now becoming real.

 After 9 days in our local hospital, I transferred Marielle to a children’s hospital in Pennsylvania where I heard a doctor had recently split a pair of Siamese twins who shared a liver. I was determined to get her the best care, no matter what, and this seemed like a good start. Once there, a Kasai procedure was performed and we learned the devastating truth about biliary atresia. Our surgeon told me to take one thing at a time, but I knew that I had to start planning for her transplant. We went home for a few days only to return to the hospital because of fevers.

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Marielle had developed ascites 2 weeks after her Kasai procedure. No one would tell me, but I knew that it was the beginning of the end. Marielle would spend most of the next 4 months at the children’s hospital. She had developed an infection in her liver which proved to be resistant to the strongest antibiotics. Our doctors agreed that a transplant might be the only way to rid her of this infection. In desperation, we flew Marielle to a mid-west hospital for a possible living-related transplant (they had done the first living-related liver transplant in the U.S.). Miraculously, her infection cleared en route to Chicago. Needless to say, we looked like fools. The doctors thought we were being a bit premature and suggested that we return in the Fall. They asked us to stay in the area so that they could provide a safety net, so we rented a furnished apartment (our hotel had no heat or hot water). At 35 degrees below zero, with a wind chill factor of 75 degrees below zero, it was the coldest winter in 14 years.

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A week later, Marielle developed bleeding varices. The attending doctor told me that there was nothing they could do unless Marielle experienced severe bleeding. This puzzled me, so I contacted all of our doctors back on the east coast. They advised me to bring her to the Chicago ER immediately. I rushed her there where the ER team attempted to draw blood with no success. They tried to draw blood from her broviac in her chest. Again, more failed attempts. They contacted the GI doctor on call. I was told that he would be to see us right away. Hours passed and no GI doctor. Finally, after 7 hours of waiting in the ER, I was told that the GI doctor was not in the hospital and would not see Marielle until the next day. My baby was screaming like never before. I had requested her special baby formula and a feeding pump. After 5 hours, the formula arrived, but there was no pump available. It was now 17 hours that Marielle had been without food. Knowing this and that a GI doctor would not see her, I knew I had to do something.

 At this point, I made the decision (against the ER doctor’s advice) to disconnect the broviac line and book a flight back to Pennsylvania. Once back at the apartment in Chicago, the phone calls began. The Chicago GI doctor on call apologized for the misunderstanding of hospital policies. He felt that Marielle was not in danger, but he would have a bed ready for her (so that we would not have to go to the ER again) if anything was to change.

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Later that evening, Marielle vomited her feeding tube. I immediately contacted the Chicago GI doctor and brought her back to the hospital. The next morning, my social worker (with whom I had only met once, briefly) informed me that she would be filing charges against me for removing Marielle from the hospital the prior evening. I knew that I needed to leave, because we could no longer work together. The next morning I was investigated by the state’s department of children’s services. The state workers seemed to be puzzled why accusations of medical neglect were filed since I had flown half-way across the country to save my daughter’s life. An assessment of my parenting skills was made and my choice for private home nursing for my daughter was made known (they frowned on that–instead wanted the mother to handle all care). I was labeled as “difficult,” because I wanted to see blood test results and review doctor’s notes. I was surprised to find that no other parents had requested this kind of information.

As soon as possible, we were back in Pennsylvania where Marielle was evaluated for cadaver transplantation. We returned home only to have her re-hospitalized. We were only back home 3 days when I received a beep on my pager. I joked with my nurse that it could only be one of two people; the pager company, because my husband forgot to pay my $12 monthly service fee, or our transplant coordinator. I looked down at the number and began to scream with joy. I could not dial the telephone fast enough. Our coordinator was calm and apologized for not seeing us during Marielle’s recent hospitalization. She said she wanted to make sure Marielle was doing well and that she was without fever. I assured her everything was fine and that I thought that a liver had become available when I received her beep. Our coordinator then told me that indeed a donor liver had been found for Marielle. I started to cry…I was just so happy.

We arrived at the hospital late that evening and said our prayers. Thoughts of losing Marielle became real for our family. This might be the last time we put our baby to sleep. The next morning was St. Patrick’s Day (March 17, 1994). It seemed like the perfect day. See, Marielle was named after her paternal Italian grandmother, Mary. The meaning of Marielle in Italian is Little Mary. We always joked that Marielle was green, because of her Irish decent on my side of the family. It was now the luck of the Irish that would help Marielle come through her transplant with flying colors. When our surgeon (who now practices law) removed her old liver, our coordinator brought my husband and me into a room to view the organ. There was not a pink spot on it. It was large and dark green with spots of black. Surely, no one expected her old liver to look this bad. During the surgery, all I could think about was the other mother…the mother who made the decision that her child should not die in vain…that another child could be saved with the gift of organ donation. To this day, I pray for this special mother.

While waiting for progress reports, we visited the gift shop where I came upon a funny looking blue stuffed elephant. I pulled his trunk and the melody, “You Are My Sunshine” played. This was the song I had sung to my daughter since she was born. I bought the elephant to comfort her when she returned from the operating room. This silly elephant was a sign for me that everything would be okay. Marielle’s transplant lasted only 6 hours. She did extremely well. Marielle’s maternal Irish grandmother even joked that all of her friends were calling my daughter , “Marielle O’Carroccio.”

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A few hours later, we were allowed to see her in the ICU. No one could have prepared me for the post-transplant days; the tubes and machines were overwhelming. I remember my father counting more than 17 tubes, IVs and other connections. Marielle tried to cry, but the artificial airway that was placed in her throat prevented us from being able to hear her. To hold her proved to be too painful for Marielle. My husband and I felt so helpless. A few days later, she was moved to the post-transplant unit where she went into rejection on the 7th day after receiving her new liver. The surgeon was waiting for me when I arrived at her room that evening. Her liver had clotted off and emergency surgery was performed in hopes of saving the graft. I had thought that we were on safe ground when the rug was pulled from underneath us. I didn’t know how much more Marielle could endure, but corrective surgery for portal vein thrombosis was successfully performed. A week or so later she had a mild bout of rejection and was treated with IV steroids. All seemed to be going well until the doctors became concerned with Marielle’s poor weight gain. It would be another month or so before this problem was resolved.

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Finally, on May 17th, 1994, exactly 2 months after her transplant, we began our trip home. My husband took Marielle in our car and I drove my father’s truck with all of our belongings. We were no more than 20 minutes from home when another driver hit my rear tire. This caused the truck to spin around and flip over more than 6 times. I knew I was going to be all right. I knew God would not take me away from Marielle. He knew that only I could give her the care she needed. It was my seat belt that saved my life, but I still spent a week in a trauma unit, because I sustained broken ribs, a fractured sternum, a punctured lung, and numerous other injuries. I was lucky to be alive.

Now, it is 8 months later and I know that I have been blessed. It is for this reason that I have dedicated myself to helping others in their journey. I now know why my husband and I were picked to be Marielle’s parents.

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This Christmas will be a very special one. Our family is together again.  Our journey has brought all of our family closer.   May you all have a special holiday season and healthy New Year.
Best Wishes,
Lisa Carroccio

(Note:  Names and places were omitted in original letter to donor’s mom to respect anonymity.)

(Side Note:  Notice pacifiers in many of the photos?  Marielle could have done that TV commercial where the mom is driving and the child drops the pacifier, so mom has to pull off the road to find it in the car to calm child…LOL!  She would have two pacifiers clipped to her shirt, a pacifier in each hand and another in her mouth.  Seriously.)

A Week of Celebration

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Originally we were hoping to have one of our big shindig with 200 people to celebrate Marielle’s 15th liver transplant anniversary.  But the truth is I just couldn’t get such a large party together in such a short time (our annual BBQ this Summer will have to suffice).  Anyway, we did celebrate by dining at Trattoria Romana.  I know–we spent St. Patrick’s Day at an Italian restaurant…LOL!  But it was where Marielle wanted to go, so we did.

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And since it’s all about friends when your 15 years old, Marielle and her crew got taken by limousine to The Palm in NYC tonight.

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Luckily our dear friend, Albino, will keep an eye on the girls so they don’t get into any trouble.

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And then they’ll continue the party tomorrow as all the girls are sleeping over.  Guess I’ll be getting lots of Hotcakes and Sausage from McDonald’s in the A.M.

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I’m feeling pity for the unfortunate limo driver who has to deal with all the girl chatter tonight.  Hope he brought earplugs with him!

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With friendship,

Lisa

Valentine’s Day SWAP from My Favorite Craft Addict

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Received a HUGE box yesterday from one of our newest members of our little secret society, Mary the Craft Addict!  So glad we let Mary come sit with us at the cool table…LOL!

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Pure Valentine’s Day bliss!  Mary’s mission was to spell out the word HUGS!  However, each letter needed to meet a certain criteria (see below).

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H is for HANDMADE tulle corsage heart.

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U is for candle to USE.

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G is for GOODIES to eat….mini moon pies!

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S is for SOMETHING NEW to make me smile all day long.

Doesn’t Mary rock?  Thanks so much Mary!  You’re the best!

Mary was the lucky recipient of The Magic Box giveaway I had last year.  She and I became quick friends!  Over the last year, she and I have shared many phone calls–I can’t tell you how she cheered me on through the launch of Downtown Joey and my daughter’s transplant.  She is simply amazing.

Oh and it gets better!  Mary (of Georgia) is supposed to be up in my neck of the woods this weekend (Staten Island, NY).  Hopefully we can have bunch together on Sunday!

In the meantime, I need to find a gown for a formal affair on Friday night at the Rainbow Room in NYC and somehow sew/embroider a zillion baby gifts for my dear friend’s baby shower on Sunday afternoon.  Did I mention the kids are home due to snow/ice?

lisasiggie

Christmas 2008…Wishing For a Miracle

Somehow I forgot to post this the day after Christmas (guess I was just a tad distracted, you think?)

December 26, 2008

Christmas was so different this year.  I’m so glad it’s over.  Usually all the holiday ceramics I made years ago bring me joy.

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I went through the motions.  Never finished shopping or decorating.  Didn’t really cared that my presents were without handmade bows and calligraphy gift tags.  Or that I didn’t buy all the gifts I had set out to purchase.

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The tree had stood undecorated for two weeks until my daughter decorated it on Christmas Eve.

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Christmas decorations were place randomly around the house hoping to add Christmas cheer.

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My heart was breaking each and every minute of the day.

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There were no gifts under the tree until Christmas morning, because I waited until last minute to wrap them.

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All I would think about was if a Christmas Miracle (a new kidney) would come in time…

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Would my prayers be answered before it was too late?

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Although I did not feel hopeless, the reality of Marielle’s health became more than I could bear…

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But I kept it to myself.  I didn’t want to make my loved ones worry anymore than they already were.

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I forced myself to keep conversation light and smile so everyone would continue to think I was strong…

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The stockings were hung haphazardly on the stairs…

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Never did put a single Pink Christmas Light on the outside of the house.  I did, however, manage to put my 2 foot angels in the front window…

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I did get Marielle an embroidered stocking to match her Pink and Zebra bedroom…

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And she got my Pink Christmas Tree which was “supposed” to go in my Pink Sewing Room.  The things us mothers sacrifice for our children…LOL.

Hope everyone has a wonderful holiday!  Perhaps next Christmas will be brighter for me.

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HOT Holiday SWAP

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There’s a bunch of us girls who last year formed a book club, Girls Night In.  Except, we soon discovered we really didn’t read much.  Instead, we had more fun doing SWAPS.

For this year’s Holiday SWAP, the mission was to spell out the word HOT.  The SWAP needed to have 3 things in it:

  • H – Handmade Item
  • O – Ornament
  • T – Thrift Item

Some time ago, I nicknamed AmyApplique Amy™ (even though some of her friends call her Alphabet Amy…LOL).  Amy is the Queen of Applique.  Her business, Tote and Tee, has a neat selection of custom initial tees, totes and other goodies.  I was thrilled to receive my SWAP from her!

First up, a handmade item with my initial!

Front:

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Back:

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Next, a hot pink DIVA ornament!  Yes, I do already have one, but I have another place for it!

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Lastly, Amy found the coolest sewing thimble at a thrift store.  At first you might think this is just a thimble.

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But think again.  It’s a large Shot Glass!  ROTFL!

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Thank you Amy!  What a bunch of great surprises!  And yes, I’ve already eaten the chocolate and caramel you included in the box!

lisa

What Are You Thankful For?

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After last year’s Thanksgiving disaster, this year we opted to go to our favorite restaurant, Italianissimo, to enjoy a yummy feast.  In addition to the standard Turkey, stuffing and mashed potatoes, we enjoyed Italian appetizers galore ( grilled Portabello mushrooms, baked clams, grilled shrimp, carozza, baby scallops, eggplant rollatine, and stuffed mushrooms), penne and porcini mushrooms in a white sauce (it doesn’t get better than that) and then some of the most delicious desserts.

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Yes, I’m thankful for a great meal.  But it pales in comparison to the more important things this Thanksgiving:  family and friends.

I’ve been doing a lot of thinking.  Sometimes I just think too much.  Not with worry..no.  More about how I’ve never doubted for one minute that we would find a way through these difficult times.

Often people ask me how I’m coping and I tell them, “fine.”  Yet they will ask me the same question repeatedly as if they expect me to be terribly depressed or something.  I’m just not.  See, all this hospital and transplant stuff is second nature to me.  I started this journey 15 years ago when my daughter was diagnosed with liver disease at 10 weeks old and was told she’d never live to see her 1st birthday.

And even back then, I never doubted I would find a way.  I’d sneak into the bio-medical library in Philadelphia in the early hours to read the latest liver transplant journals–learning everything I could to make the best decisions.  Sometimes I’d read for hours a day.  I connected with other people–both parents and medical professionals throughout the U.S. and abroad.

I even fought our insurance company to permit us to do a living-donor liver transplant.  My daughter was the first child in the U.S. to be approved through an HMO–not an easy feat.  Although we weren’t able to find a suitable donor back then, we opened the door for all those families who followed us giving them the option if they chose.

For 7 years, I headed a large pediatric liver foundation and volunteered my time to ensuring families received all necessary support and referrals to pediatric liver transplant centers.  Heck, I even got a little girl a free liver transplant and medication.

But then it all came to a screeching halt–in one short year, I attended more funerals of children who died from liver disease and/or transplant than one should in their lifetime.  I just couldn’t do it anymore.  I couldn’t tell another new parent that everything would be ok.  I felt like I was lying to them.  And it was at that point that I closed the door to that chapter of my life.

Those doors have swung back open again and I need to take my daughter through another type of transplant.  Although kidney transplant is new to me, transplant is not.  Yes, I’ve had to learn new things, but none of it do I fear.  I use my head and not my heart as I make these difficult decisions.  And hopefully, my choices will get my daughter through this.

What am I thankful for?  I’m thankful I am ME even if I at times have false courage and unrealistic optimism.  I forge ahead knowing I have the tenacity and determination to see this through.  I am thankful that it’s 15 years later and many medical breakthroughs have occurred since then.  But like I said, I’m most thankful I am surrounded by wonderful family and friends.  Because without people, what would we have to live for?

Oh and I’m thankful we are home from the hospital and I can sneak out at 5am tomorrow morning to catch some of the Black Friday sales–especially at Joann’s Fabrics.  And Best Buy.  And Macy’s.  Etc.

Wishing everyone a blessed Thanksgiving!

lisa

P.S. – sorry to the poor photos…someone had messed with my camera settings.

Sew Many Amazing Things Are Happening Here

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There’s a big sign up at NY Presbyterian Hospital that reads, “Amazing Things Are Happening Here“.  And boy, it is so true!

I have some great news—our transplant coordinators say we clogged the phone lines with requests for donor evaluation forms! They have received an unbelievable amount of kidney donor applications for my daughter from all over the world–Africa, Saudi Arabia and every state in the US!

It ends up friends and friends of friends (as no one is a stranger, but just friends we haven’t met yet) posted about my search for a kidney donor to Marielle on Twitter, Facebook, web sites and blogs–it made the news (special thanks to Courtney on Fox News!)…and now we have more possible donors than we could have ever wished for!  Thank you to EVERYONE who sent in donor forms, called, blogged, twittered and help spread the word…BUT WE DO NOT NEED ANY ADDITIONAL DONORS AT THIS TIME.  I am amazed by the power of the web and the hearts of those who helped make a difference.

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But that’s not the best newsalthough I can’t disclose her name just yet, ONE OF MY E-BAY FRIENDS WAS FOUND TO BE THE PERFECT MATCH!  When I called my friend yesterday to tell her the news, she said it was the BEST Birthday present ever (to hear she was THE ONE on HER Birthday–THE ONE who may save my daughter’s life).  I will give you just one hint:  My dear friend has a serious fabric addiction just like me.  I’ve seen her fabric stash…LOL!

Now, if all goes as planned and my friend makes it through the rest of her kidney donor testing (so far, all the important sensitivity tests are perfect), doctors want to schedule my daughter’s kidney transplant for the day after Christmas (my deceased Grandma’s birthday)!  Doctors need to get Marielle in the best possible health before the transplant (she’s lost 1/10th her body weight and can’t walk more than a few steps).  I can’t wait to let you know the full story–and how this is truly so special and meant to be.  So stay tuned!

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Although we brought Marielle home from NY Presbyterian Hospital last night, she is currently hooked-up to a dialysis machine for 4 hours at our local hospital as an outpatient.  She continues to struggle with severe pain and high blood pressure.  Yet, she is just happy to be home with her loved ones for Thanksgiving…even if it includes dozens of medications around the clock, dialysis and constant blood pressure monitoring.

To say we are blessed is an understatement. Please continue to say a little extra prayer that all goes according to plan.  And yes, it will be a wonderful Thanksgiving at my house this year!  May your home feel the love of the holiday season and be reminded how much we all have to be thankful for.  Happy Thanksgiving!

lisasiggie

I Get By With a Little Help from My Friends and Followers

PLEASE SEE MOST RECENT UPDATE:

>>>>>>>>CLICK HERE<<<<<<<<<<

Marielle is still hospitalized up at NY Presbyterian-Columbia Hospital. Although dialysis has helped bring her kidney numbers under control, we are still struggling with dangerously high blood pressure. And my worst fear about dialysis has happened—her catheter is infected…but only at the catheter exit site so far. Docs are working hard to get the infection under control, so they won’t have to remove the catheter in her chest and implant another.

Computer access up here STINKS! We’ve tried everything to get our laptop to work in her hospital room, but techs say the room doesn’t have a good wireless signal. Luckily I’ve found a computer in one of the parent lounges, so I can now check my email and blog.

Our new transplant coordinator (oh my, I adore this lady) has gotten a TON of donor evaluation consent forms…more than I could have ever wished for. I believe the hospital is only permitted to send out 12 blood vial kits to possible kidney donors each week (something about our private health insurance limits). So please hang in there with me while we sort through all the donor forms.

There’s been many comments on my blog that need answers. So here goes:

  • Marielle is an A blood type. It doesn’t matter what blood type as they have the ability to do a mismatch.
  • Marielle is on hemodialysis as she cannot have peritoneal dialysis (through her abdomen) due to her prior liver transplant.
  • Although dialysis will prolong Marielle’s kidney function, it has not been able to control her blood pressure. And the more blood pressure issues, the more heart damage.
  • Marielle is having terrible pain due to bowel problems. Docs have tried a half a dozen laxatives, fibers, etc.—nothing seems to be working to stop the ongoing pain.

I am waiting to hear back from our transplant coordinator. Apparently she “might” have found a good donor for Marielle. She said it looks good on paper, but it would need to be run through their computer to determine if the donor would match. However, the hospital will continue to search for a better match in the meantime. The better the match, the more successful the transplanted kidney function.

I once again want to thank EVERYONE. I cannot believe how everyone has rallied around me and my Sunshine Girl. You all give me strength to face each day. Seriously. I hope to have good news soon. Thanks for coming along on this journey with us.

With friendship,

Lisa

Sew Hoping for a Miracle

PLEASE SEE MOST RECENT UPDATE:

>>>>>>>>CLICK HERE<<<<<<<<<<

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On Thursday night, we had to call an ambulance to get Marielle to the local emergency room as her condition was deteriorating quickly.

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Marielle’s kidney blood numbers were climbing fast.  Her creatinine was 10 (normal creatinine is 0.5 to 1.1), and her BUN  was 119 (normal BUN is 8-20).  Surgeons where called to place a tunneled catheter in her chest and start emergency dialysis.

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After her 2nd dialysis treatment on Saturday, she got some color back in her face.  She passed the time by reading a book on my Kindle book reader.

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However, she was just too weak to finish more than a chapter of George Orwell’s 1984.  She easily fell asleep for the rest of her dialysis treatment.

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Although we were able to get her kidney numbers down a bit, her blood pressure (178/107) continues to be a major problem.  This morning her blood pressure is even higher and they’ve started rescue blood pressure medicine to try to lower it.

Marielle will be hospitalized here in Staten Island until Monday night and then have her kidney transplant evaluation at NY Presbyterian-Columbia University on Tuesday morning if we can stabilize her.  She will get to come home between Monday night and Tuesday morning.  Not sure what will happen after that.  If we can stabilize her, she’s be able to get outpatient dialysis until we can find her a kidney donor.

If you are interested in being tested to see if you are a possible match for a living kidney donor, you can find more information on my previous blog post.  I can’t tell you how grateful I am for all the outpouring of support and prayers.  I wish I could reply to each and every email, but my time on the computer is very limited.  Please know I read each post and email and am touched by all the love from friends and strangers.

I will update everyone as soon as I can.

lisa

Sew Urgent – Help Save My Daughter’s Life

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donate

Things continue to be difficult.  But where there is life, there is hope. 

I’m forcing myself to blog so I can update all my dear friends and family about what is going on with my sweet Sunshine Girl, Marielle, as her kidneys fail.  It looks like we are on the way to the local emergency room again tonight–she’s in terrible pain and a bit lethargic.

After continued difficultly getting calls returned and kidney donor evaluation packages send to those who have come forward to donate their kidneys, we’ve given up on the Philadelphia hospital of ever finding a living kidney donor.  They’ve recently told us they will only test family members and the closest of friends.  They’ve taken it upon themselves to decide who our friends are.  Philadelphia has only tested 3 donors in 4 months.  To say I am furious is an understatement.

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But there is hope.  We are in the process of transferring Marielle’s care to NY Presbyterian-Columbia University Hospital (NYP) in hopes their additional living-donor kidney programs will save her life.  Not only will NYP consider family members as donors, but are willing to evaluate EVERYONE (friends, associates and kind strangers) who wants to donate a kidney.  That’s right…EVERYONE regardless of blood type, antibody mismatch, age, etc.  They offer several kidney donor options for us:

Compatible Living Donor

Incompatible Donor Program

Paired Donor Exchange Program

Deceased Donor Program

Marielle will only match 1 in 50 people in the general population (average person matches 1 in 2). I  am asking EVERYONE who has ever loved a child as deeply as I do my daughter to please consider being a living-kidney donor to her. You might be the one who can save my daughter’s life.

If you would like to receive a donor consent form to see if you could be a potential donor, please print out this form:

kidneydonorquestionnaire

Then send it to Joan Kelly either by email at kellyja@nyp.org or fax (212) 305-9642.  Be sure to put MARIELLE CARROCCIO as the Potential Recipient’s Name.

Please pass this information along to anyone and everyone.

I continue to be comforted by the tremendous amount of love and support from all of you.  Thank you seems to fall short.

lisasiggie

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