Journal History
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Saturday, May 23, 2009 10:35 PM CDT
I wake up to see you Standing in the morning light.
I reach out to touch you,
But all that I get Is a memory, and yet, I feel you are near
But my vision's not clear.
Yet I have your image always in view,
I'm forever thinking of you.
I feel you watching me Quietly in the morning light.
I try to find some peace of mind
In knowing you're where You don't have a care.
I take comfort that You no longer have
To keep living in a world full of pain,
But I ache to see you again.
On rainy days I sit and think of our lost years,
The times we spent apart just fill my eyes with tears,
But fields of wild flowers and yellow butterflies
Remind me of you and make me smile.
I walk in to your room And stand there in the morning light.
I cherish the memories:
Your robe on a hook,
The pictures you took.
I can smell your perfume
On the clothes in your room.
Everything I see makes your loss hard to bear,
I see you everywhere.
I live now in a still world Listening in the morning light.
I strain to hear a familiar voice
But all that I hear Is the sound of my tears.
Then from a far place
Comes the slightest trace
Of your voice saying, "I'm all right, you see,
and I always will be."
~In The Morning Light
by Yanni
Tuesday, May 19, 2009 9:58 PM CDT
"Time"
Time flowing like a river,
Time beckoning me.
Who knows when we shall meet again - if ever.
But time, keeps flowing like a river, to the sea.
Goodbye my love, maybe for forever. Goodbye my love, the tide waits for me.
Who knows when we shall meet again, if ever.
But time, keeps flowing like a river...(on and on), to the sea.... to the sea.....
'til its gone forever....gone forever..gone forever....ahhhh
Goodbye my friend, maybe for forever.
Goodbye my friend.
Who knows when we shall meet again; the stars wait for me.
Who knows when we shall meet again, if ever.
But time...keeps flowing like a river...(on and on),to the sea...to the sea...
'til its gone forever...gone forever...gone forever.....ahhhh
forever more
forever more
forever more
~Alan Parson's Project
Saturday, May 2, 2009 10:19 AM CDT
From "My Immortal" by Evanescence
... There's just too much that time cannot erase
When you cried I'd wipe away all of your tears
When you'd scream I'd fight away all of your fears
And I held your hand through all of those years
But you still have
All of me
You used to captivate me
By your resonating light
Now I'm bound by the life you left behind....
These wounds won't seem to heal
This pain is just too real
There's just too much that time cannot erase
...When you cried I'd wipe away all of your tears
When you'd scream I'd fight away all of your fears
And I held your hand through all of those years
But you still have
All of me
I've tried so hard to tell myself that you're gone
But though you're still with me
I've been alone all along
When you cried I'd wipe away all of your tears
When you'd scream I'd fight away all of your fears
And I held your hand through all of these years
But you still have
All of me
Friday, February 13, 2009 8:18 PM CST
Borrowed Angels - Kristin Chenoweth
They shine a little brighter, they feel a little more
They touch your life in ways no one has ever done before
They love a little stronger, they live to give their best
They make our lives so blest, so why do they go so soon?
The ones with souls so beautiful
I heard someone say--
There must be Borrowed Angels, here in this life
They come along, into this world, and make this world bright
But they can't stay forever
Cause they're heaven sent
And sometimes, heaven needs them back again
They reach a little deeper, they see what's in your soul
And even when they leave you know, you'll never let them go
The world's a little richer, just cause they came along
Their love goes on and on, so why do they go so soon?
The ones with souls so beautiful. I heard someone say--
They must be Borrowed Angels, here in this life
They come along, into this world, and make this world bright
They can't stay forever, cause they're heaven sent
And sometimes, heaven needs them back again
How else can you explain why they're here and not here to stay?
I believe there must be, must be
Borrowed Angels, here in this life
They come along, into this world, and make this world bright
But they can't stay forever, cause there heaven sent
And sometimes heaven needs them back again.
And sometimes heaven needs them back again.
Saturday, December 13, 2008 8:50 PM CST
Well, looks like Ivie has taken a turn for the worse again and was put on the vent again yesterday. What a rough holiday season they've been having. Please pray it's just a bump in the road.
Things at the Wells house are good. Definately can't complain. We had a birthday party for Christian at McDonald's play place this morning. It was just a small party with a few kids from the neighborhood, but boy they had fun! Christian just turned five on Tuesday. Same age as Carterman was when he flew to heaven. It doesn't seem possible that he's been gone over two years. It still feels like he was just here. Maybe that's because I see so much of him in Christian. Christian has been watching a lot of Thomas this week and is asking for some Thomas toys from Santa. He loves playing with Carter's trains these days. But he's not nearly as obsessed as his brother was. He also, like his older brother Cameron, loves Hot Wheels cars, and he also loves running, and jumping and climbing, and riding around looking at Christmas lights. I'd have to say we're pretty much best buds most days (when he's not driving me bonkers.) I'm pretty tired, so I know I'm rambling, but I guess I'm just feeling really blessed to be their mom tonight. I guess you can't help feel that way when you see other parents going through so much with their kids. I hope those of you who happen upon this page are also having a very blessed Christmastime. Happy Holidays!!!
Tuesday, December 9, 2008 8:58 AM CST
Ivie is still taking baby steps to recovery, but compared to a few weeks ago, it looks like her baby steps are adding up! She is off the vent now! She's still nonverbal at the moment and has limited mobility, but she's making progress, so that is wonderful! There is a link below to her webpage if anyone wants to keep up to date on her progress. I know Kara appreciates the prayers and support.
Friday, November 14, 2008 8:17 AM CST
Thanks for bearing with me while I vented here the other day. I guess sometimes this website shows a very negative side of me, because I come here usually just to vent and let out negative feelings. But it makes me feel better. I'm very happy to report that Ivie is making teensy tiny babysteps towards recovery. So please keep up the prayers!
I really don't consider myself a huge Josh Groban fan, but one of his songs really touches me and makes me think of Carter, so I thought I'd post it:
Who can say for certain
Maybe you're still here
I feel you all around me
Your memory's so clear
Deep in the stillness
I can hear you speak
You're still an inspiration
Can it be
That you are my
Forever love
And you are watching over me
From up above
Fly me up to where you are
Beyond the distant star
I wish upon tonight
To see you smile
If only for awhile
To know you're there
A breath away's not far
To where you are
Are you gently sleeping
Here inside my dream
And isn't faith believing
All power can't be seen
As my heart holds you
Just one beat away
I cherish all you gave me
Everyday
Cause you are my forever love
Watching me from up above
And I believe that angels breath
And that love will live on and never leave
Fly me up to where you are
Beyond the distant star
I wish upon tonight
Too see you smile
If only for awhile
To know you're there
A breath away's not far
To where you are
I know you're there
A breath away's not far
To where you are
Wednesday, November 12, 2008 9:47 PM CST
I came home last night after another trip to Chicago. This is the second year in a row I've gone back, and this is the second November in a row that I've had to return for a very sad reason. Last time this year, our Child Life Specialist, Ms. Bernice, had passed away and I went to attend her services. She was a hero in my life, and I know from hearing so many people up at UIC talk about her and how much they miss her, that she was a hero to them too.
Well, I don't know what made me check my email Friday morning, because I don't check my personal email account as much anymore. But when I did, I found out from a nurse that our friend Ivie had taken a turn for the worse. This was shocking to me, because over the past three years, Ivie has flourished. She's been talking up a storm, going to preschool five days a week, riding the schoolbus (just because she likes it), and playing with her dogs. She took her Make-A-Wish trip in the Spring and got to meet the princesses and Barney. She even started eating and got rid of her tube feedings (which is monumental for her.) She's also developed a love for pigs and has grown beautiful blonde ringlets for hair. She's the type of girl who would steal your heart in a glance.
So needless to say, hearing that Ivie is struggling again doesn't make any sense and it's really not fair. Of course, I know that life isn't always fair. But this is the ultimate in unfairness.
I remember meeting Ivie for the first time and hearing the PICU doctors talking about how sick she was. I remember her being as orange as a little round pumpkin. I remember her mama's story about how one of the nurses at Riley's had read about Carter, and how they approached UIC and had to fight to get Ivie there. And I remember almost wishing they hadn't read about Carter, because I wasn't sure. --I REALLY wasn't sure that Ivie was going to make it through her transplant. And I remember watching her miracle happen and watching Malachi's miracle and Chrystal's miracle. And it was just amazing.
And then I remember looking at Kara holding Ivie at Carter's gravesite the day he was buried, and the pastor acknowledged them, and I remember sobbing at that moment and hoping at that moment that God had given Carter to us for a very good reason.
So I'm very, very confused. Why, why, why after all that Ivie has overcome, does she have to go through so much more? NOT FAIR.
But I guess all we can do is just pray. And Bubby, Ivie's Dad, asked me before I left Chicago to go home and ask everyone I know to pray for her. And I don't know if anyone even ever reads this webpage anymore. But please if you do, say a little prayer for Ivie. She needs to get better fast, because if you ask me, what she's going through is ridiculous.
Friday, July 11, 2008 9:25 PM CDT
On the front page of our local paper this morning......
At 5 years old, this transplant survivor is already a winner
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Image 1 of 2 | Click for more
Holly Waide, 13, left, cuddles with her sister, Sabrina, 5, on Wednesday at their family’s home in Virginia Beach. (Rich-Joseph Facun | The Virginian-Pilot)
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Sabrina’s life
Complications from a birth defect that caused her intestines to grow outside her body left Sabrina unable to digest food properly. Her biological parents gave up parental rights shortly after she was born, and Sabrina was adopted by the Waides.
About the transplant
Sabrina’s biological mother donated a portion of her small intestine for the transplant. A long-term prognosis is unknown because the procedure is rare. Sabrina has developed food allergies but is thriving.
Organ donation
To learn more about organ donation, contact LifeNet Health, a nonprofit agency that coordinates organ recovery and placement in Virginia: 1 (800) 847-7831 or visit the Web site, save7lives.org.
According to LifeNet Health, 1,937 children in the United States are waiting for a life-saving organ transplant. Of that number, 174 are waiting for a small intestine transplant.
Foster parenting
For information about how to become a foster parent, contact your city's Department of Social Services:
Chesapeake: (757) 382-2000
Norfolk: (757) 664-6000
Portsmouth: (757) 405-1800
Suffolk: (757) 514-7450
Virginia Beach: (757) 437-3292
By Elizabeth Simpson
The Virginian-Pilot
© July 11, 2008
VIRGINIA BEACH
Like any competitive 5-year-old, Sabrina Waide wants to win.
She jogs in her Virginia Beach yard every day to prepare for running and swimming races she'll join in this weekend. When she wakes up, she asks, "How many more days?"
In the eyes of her adoptive parents, Melissa and Bill Waide, she's already a winner for having endured years of life-and-death moments and a transplant operation that's been done on only a small number of children.
Sabrina will take part in the U.S. Transplant Games in Pittsburgh, a national competition held every two years for recipients of donated organs.
The purpose of the event, which begins today and continues through Wednesday, is to highlight the success of transplant and to honor donors and recipients.
People who have had a transplant for at least six months are eligible. Many of the competitors have had kidney, lung, heart and liver transplants. Sabrina falls into a smaller category of those who have received a small intestine from a living donor.
She was born in 2003 with a birth defect called gastroschisis, in which the intestines form on the outside of the body. The intestines were reinserted during surgery shortly after birth. Most babies with the condition recover fine, but Sabrina's small intestine was so damaged, she couldn't digest food.
She lived at Children's Hospital of The King's Daughters for 14 months and received all her nutrition through intravenous feedings.
Her biological parents were young and not able to provide care for such an involved medical condition, Melissa said. They gave up parental rights.
Sabrina was about 6 months old when Melissa met her and had been moved from the hospital's neonatal unit to a general care floor.
Melissa is a nurse practitioner in the hospital's plastic surgery department, and was called to check some tough-to-heal skin wounds around Sabrina's IV sites.
Soon Melissa was visiting during lunch and popping in after work to spend time with the baby.
"She had this allure about her that reached out and grabbed you," Melissa said. "She was very nosy about everything that was going on."
Eventually, it became clear that Sabrina needed an organ transplant or she would die. She was running out of places where IV lines could be inserted.
Melissa worried that Sabrina's chances for receiving an organ would not be good if she did not have a family to care for her. So she asked her husband, Bill, and their three children how they would feel about becoming Sabrina's foster family.
"She didn't have anywhere else to go, and I felt she deserved a chance for organ donation."
Her two sons, Kenny and Ryan, were 17 and 13 at the time, and her daughter, Holly, was 9. Bill and the children met Sabrina for the first time at CHKD.
"She was adorable," remembers Holly, who's now 13. "She was very quiet. I held her on my lap and took her for a wagon ride."
Bill and Melissa went through foster parent training. Sabrina went home with them when she was 14 months old.
She was put on the list for a small intestine donation, but doctors were concerned she might die before one became available.
Meanwhile, a surgeon at the University of Illinois Medical Center at Chicago had begun doing a fairly new procedure using live donors rather than the more common transplant of intestines from deceased donors.
Another CHKD patient, Carter Wells, was among the first children to receive the live donor small intestine transplant, in 2003 in Chicago. The 23-month-old boy's mother was the donor.
That's how Waide learned about that type of surgery. It has the best chance of success when a family member provides the organ. So CHKD staff approached Sabrina's biological mother. Even though she had agreed to give up the child for adoption, the 23-year-old woman said she would donate a portion of her small intestine.
The operation took place on Oct. 19, 2004, in Chicago.
"She gave Sabrina life again," Melissa said. "She gave her a second chance."
Sabrina's biological mother stayed there about a week, then returned home. The Waides have not had contact with her since.
Sabrina recovered in Chicago for eight weeks, and came home in December 2004. Her adoption became final the following October.
She can eat some foods but still receives much of her nutrition through a tube in her belly because she has developed several food allergies, probably due to her condition and anti-rejection medications.
The 40-pound girl is thriving, though. She plays soccer, takes ballet lessons and is getting ready to start kindergarten in the fall. A mottled, raised area on her tummy is the only visible evidence of the transplant.
There are still only a small number of children nationwide who have had the same surgery. Carter died in 2006 at age 5 after his third transplant failed. Some recipients are doing well, but there are so few that the long-term prognosis is unknown.
"You take every day as gift, and you're grateful for it," Melissa said.
Once they adopted Sabrina, the Waides decided to continue being foster parents. In December 2006, they took in a baby boy waiting for a liver transplant. He died in February 2007, at less than a year old, before an organ became available. They're now foster parents to two brothers who are 2 years and 9 months old.
"There are children who need love and a home," Melissa said. "That's not too much for a child to ask for."
Sabrina, her parents, her sister and her two foster brothers will load up the car today to head to Pittsburgh, where Sabrina will be one of 35 organ recipients from Virginia to compete in the U.S. Transplant Games. Team Virginia - 100 people strong - also includes donors and the families of both recipients and donors.
Melissa has told Sabrina not to worry about what place she comes in, just to run and swim. The girl with the pigtails, though, has a one-word answer for what she plans to do.
"Win."
Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com
Monday, June 9, 2008 9:58 PM CDT
If there's something I like to think that Carter taught me, it's to keep on giving resiliently. No matter what anyone puts you through, it's important to still give them something, even just a hug or a smile or a laugh or an "i love you" ...something. And no matter what you've been through or what you're about to go through, it's important to keep on playing, and it's important to keep on sharing joy and laughter and love regardless. Well, I don't know how well I carry out the lessons he taught me. I know I let menial things distract me and I don't carry out the lessons like I should. I know for sure I don't carry them out in the astonishing ways he did! Makes me smile to think about him.
I've been told that our children live on in our hearts, even after they pass away. It gives me hope to think that that's true, that in some part of my mixed up, misguided, distracted heart, there's a resilient, loving, spirit somewhere in there that's ready to give regardless of my circumstances, and regardless of the outcome...
So in the spirit of giving, there's this race coming up on Saturday. One of Carter's nurses formed this team... "Team Carter" in an effort to raise money for our local Children's Hospital (where Carter was treated). I know I've let life distract me over the past month or so, and I should have posted about this WAY before now, but if you bear with me I'd still like to pass along the info...
3rd Annual RunWalk for the Kids
Saturday June 14, 2008
6:30 to 11:30 a.m.
601 Children's Lane Norfolk
Here's the link on how you can get more info to help our cause...
www.active.com/donate/runwalkforthekids/carterman
If you can help in any way that would be awesome, even just by forwarding this along, or by giving to some other cause, if you can't give to this one. And thanks so much for still visiting Carter's webpage, it let's me know that his spirit lives on in other people's hearts too.
Sunday, January 20, 2008 0:11 AM CST
An Angel in the House
by James Henry Leigh Hunt
How sweet it were, if without feeble fright,
Or dying of the dreadful beauteous sight,
An angel came to us, and we could bear
To see him issue from the silent air
At evening in our room, and bend on ours
His divine eyes, and bring us from his bowers
News of dear friends, and children who have never
Been dead indeed,--as we shall know forever.
Alas! we think not what we daily see
About our hearths,--angels that are to be,
Or may be if they will, and we prepare
Their souls and ours to meet in happy air;--
A child, a friend, a wife whose soft heart sings
In unison with ours, breeding its future wings.
Sunday, November 4, 2007 10:30 PM CST
I just got home last night after a busy trip to Chicago. I had found out on Tuesday afternoon that our Child Life Specialist, Ms. Bernice had passed away. She was an awesome person in our lives, a huge source of support and inspiration, really a hero to me. I could go on and on and on about all the things she did... making sure we were fed, making sure we had warm coats to brave the Chicago winter, teaching me guided imagery and relaxation techniques (that I still use,) inviting me to parent groups, and coffees and ball games, and making sure I got my massages regularly, making sure Carter and his siblings had LOTS to play with, making sure Carter had plenty of playmates and that he was able to get out to activities when he felt up to it, just stopping by to see how we were doing everyday, attending Carter's services after he passed and organizing a memory book for me to treasure... like I said I could go on and on and on. I'm afraid the hospital won't ever be the same without her. I know they're going to be getting another Specialist eventually, but it just won't be Bernice. Those of you who know her will know exactly what I mean.
So my trip was bittersweet. I guess I was hoping for some resolution or closure too by going up, but for right now I'm just feeling a mixed bag of all sorts of emotions. I saw so many friends who I hadn't seen since before Carter's passing. It warmed my heart to see that not too much has changed up there in the UIC PICU. The same guys and gals are still trudging away with the same tender, generous spirit that they've always had. Even after just seeing them, I miss them so much again already.
I also had the luxury of swinging down for a quick trip to Indianapolis to see Malachi and his brand new sister Ruthie. I think seeing the Millers and the Shercks, and sitting up late chatting with Rachel was very therapeutic. Please pray that Malachi stays healthy and Ruthie keeps getting healthy too.
Monday, September 24, 2007 6:47 AM CDT
cuteness....
During the first several months following Carter's passing, Peanut had no clue what was going on. He still doesn't, but around the first of the year, he did start asking where Carter was exactly. I don't think our "he passed away," or "he's gone" were very good answers, because Peanut started believing that Carter lived off in a hospital somewhere. Any time Peanut would go to my work, he wanted to run in and go see Carter, and once when we visited Grandma Bert in the hospital this summer, he was convinced Carter was in her room. He was really suprised when we opened the hospital room door and found Grandma there. So, after all that nonsense, I sought the advice from some of the Child Life Specialists I work with. One suggested that I use more "real" words and continue trying to explain what happened. So here we are... I've been telling Peanut that "Carter died. He went to live up in Heaven with Jesus, " so now every few days Peanut comes up to me and says, "Carter lives up in Chuckie Cheeses?" I guess Jesus and Chuckie Cheeses do sound the same, at least in a three year old's mind, and I reckon Carter is hanging out in Chuckie Cheeses in the sky somewhere, probably on a train ride.
Wednesday, September 19, 2007 0:22 AM CDT
...Was once highly respected, but now, alas, am not.
Was once a wealth of knowledge, but everyone forgot.......
Seems everyone’s forgotten how we toiled, how we tried,
how I loved him. He was spoiled. ...how I fought for him with pride.
They told me first he’d die at a year or two the most.
Little did they know he’d be eating rice and toast.
Through his OT, through his ST, through PT, his IEP,
I sat and learned and listened and I wondered what he’d be.
Student of the month one time in Pre-K of 04,’
...an accomplished feat once achieved, but thought about no more.
I wonder who all remembers how he’d memorize and sing.
He took a yellow bus to school before he earned his wings.
He held on so much longer. He fought and fought and taught,
and through the years seemed stronger, through all the time we bought.
I sat beside him as they poked, yet still the boy would often joke.
I sat beside him, watched his drains, yet still the boy adored his trains.
They stitched and sutured, nursed his wounds, and taught me how in time,
to give him meds around the clock and dress his central line.
Gtube care became the norm, an ostomy? ...No prob.
IV’s and sterile fields at home were just part of my job.
But all the complex care and such means nothing anymore.
I fear the lessons of love he taught will also fade for sure.
He taught about resilience... About laughter through the pain.
I marvel at the lessons, and the wisdom still remains.
But few now see the wisdom in my weary, tired eyes.
How do I share the magic still, now that he has died?
Saturday, August 4, 2007 10:57 AM CDT
Am having one of those moments (on a smaller scale of course) like Tom Hanks had in the movie Castaway when he realized Wilson was gone, or like Flick in Bug's Life as he watches the whole year's harvest wash away. I wrote a long, lovely entry this morning, but somehow it escaped off into internet oblivion. I'll try and recap what I wrote...
It was a year ago yesterday that our angel flew away. Sometimes it seems like years ago. Sometimes it seems like it was just yesterday. Sometimes it just seems unreal.
...The summer has been treating our family very well though. We've been able to spend time with Aunt Katie, Uncle Josh, and Elijah when they stayed here. Elijah is one year old now -such a big boy. We spent a weekend in the mountains. We spent a day out in the country for a family reunion with Grandma Bert, Grandpa Robert, Aunt Nette, and the cousins. We went to Busch Gardens one day and discovered Peanut is terrified of Polka dancers. We've also spent some afternoons at "Old Macdonald's Happy Meal playing in the tree." (There's a McDonald's down the street with an outdoor playground Christian loves.) Football season is here again and Cameron has started his conditioning --still loving it. The association decided to form a cheerleading team this year too, so Miss Carly is loving that.
Last weekend we spent some time swimming and playing over at our transplant buddy Sabrina's house. Funny because the weekend before Carter's passing last year, we'd done the same thing. Sabrina was having a bon voyage party this time in preparation of having her "Wish" being granted this week! Her family left Tuesday for Orlando. They're staying at Give the Kids the World Village --where we stayed when Carter got his "Wish." From what I hear, during a visit to the Magic Kingdom, Sabrina was able to eat dinner with five princesses! And of course her and Cinderella hit it off great. Yippee!!!
This week has been good too. Bobby has been working a whole lot, but that's good I reckon'. Everyone at the hospital has been so awesome in recognizing that Carter's anniversary was coming up --very sensitive and supportive. I work on a unit where Carter spent a whole lot of time (funny how things work out.) So a bunch of the girls got together and bought us flowers, and everyone told me to take the day off yesterday.
Yesterday was a reflective day I guess you'd say. I spent the morning looking at old pictures. Took the kids out to Carter's gravesite. We left him some bright blue flowers (for Thomas) and a bright purple sunflower (for Barney.) We left him another train, since his had all dissapeared. And we made a stepping stone with sparkly butterfly pebbles from a kit someone had given us, and we left that for him too.
Last night I spent some time reading poems and looking up song lyrics, trying to find something nice for this page. There were really too many to choose from. A friend at work had given me the perfect poem a few months back and I've searched up and down everywhere and can't find it (typical for me heehee,) so I'll have to get another copy and post it up here sometime. If any of ya'll have special memories or poems or songs or whatever that remind you of "the Man," please send them along. Would love to hear them and share them. I figured this one is appropriate for now...
Every night in my dreams I see you, I feel you,
That is how I know you go on,
Fast across the distance and spaces between us
You have come to show you go on
Near, far, wherever you are,
I believe that the heart does go on.
Once more, you open the door
And you're here in my heart,
And my heart will go on and on
Love can touch us one time and last for a lifetime,
And never let go till we're gone.
Love was when I loved you, one true time I hold to
In my life we'll always go on.
Near, far, wherever you are,
I believe that the heart does go on.
Once more, you open the door
And you're here in my heart,
And my heart will go on and on.
You're here, there's nothing I fear,
And I know that my heart will go on.
We'll stay forever this way,
You are safe in my heart,
And my heart will go on and on.
~Celine Dion
Wanted to say thanks to the angel (on earth) that mailed me the blanket with Carter's picture. There was no name attached in the package. We love it and treasure it. Also if everyone could please pray for our Child Life Specialist from Chicago, Ms. Bernice. She's been having it rough lately.
Friday, April 13, 2007 9:43 PM CDT
Dear Carter,
The other day I was visiting a little person at work and he asked for a pterodactyl and a prince. "You know --the kind that saves the princess!" the little person said matter-of-factly as I stood there in a stupor, wondering if I'd heard correctly. I couldn't help but chuckle a little at the unusual request. The next day, the same little dude asked me for a donkey and a pirate ship. Such random requests. Such brilliant imagination. Such magic sparkling there in his spirit.
I remember that magic there in you Carter... in the way you similarly had me searching all over for such random things. I remember how the clamps from your foley bags were like priceless treasures for you and you'd use them to make pulleys. Heaven forbid if you ever lost one. You'd use the strings from surgical masks for rope. You'd use the syringes to give your trains a bath. Today we had a bunch of little boys playing together. They all loved Thomas trains and were putting tracks together and seeing which train went the fastest. Of course, I thought of you fondly then too.
Thanks for visiting me this week. I feel a peaceful little connection to you in my heart, and its very refreshing. I still grieve you so deeply sometimes. I still miss you lots. But it felt so very nice for a change to remember you in such a very happy light. Miss you much.
Love, Mommy
"Spring offers a metaphor for the life that will one day emerge from the desolate winter of our grief." ~Kenneth. J. Doka
Happy Spring.
Monday, January 8, 2007 11:11 PM CST
I hope everyone is enjoying a bright, beautiful new year. Our holidays were nice and peaceful. We spent Christmas at home in Norfolk this year, visiting family and friends, including our transplant buddy Sabrina. We've also met a new pal here, who is waiting on a liver transplant and really needs one pretty soon. He's just a little guy, not even a year old yet. Please pray that he gets his call.
I'd like to express a huge thank you to Ms. Bernice (the child life specialist at UIC) and to all of you nurses, doctors, volunteers, etc,. who helped put together my most wonderful Christmas present ever! The pages of memories that you put together really expressed who Carter was perfectly. Thank you for giving me some laughter and helping me remember some great moments. That book is truly a treasure.
The golden moments in the stream of life rush past us and we see nothing but sand; the angels come to visit us, and we only know them when they are gone. ~George Elliot
Saturday, December 2, 2006 6:40 PM CST
I took the weekend off from work, planning for a visit from Ms. Jenn (our volunteer buddy from Chicago). But unfortunately with the wintery weather they've been having up there (lots of snow and ice), her visit was postponed. Chicago is just way too far away. I wish so much sometimes that it was possible to just drive up there for the weekend or something. Sigh. Sure do miss our Chicago/Illinois/Indiana buds sometimes.
The picture up above was taken up in Chi~town last year. Its not a very flattering one, but its the only one I could find with Carterman and Santa from last year --which is kind of surprising because it felt like Ms. Bernice had Santas visiting almost every day. Our Chicago pals (along with our Virginian ones who sent us up lots of "love") made Christmas absolutely amazing last year! Carter wasn't feeling too hot at the time, but last Christmas was definately an unforgettable one for our family.
This holiday season is going along pretty smoothly too. We went to the holiday lights parade, and we had a very nice Thanksgiving. We travelled over the mountains and through the woods (literally) to Grandmother's house in Floyd. We got to visit with our chunky little nephew/cousin Elijah, ate, and ate and ate, and did a little Christmas shopping.
Today, we went to Cameron's football awards banquet. Cameron earned this wonderful, HUGE, MVP award trophy!!! He really worked so hard for it, and football has been such a positive thing for him this Fall. I'm such a proud Mama! Carly is getting all set for her big moment next weekend too... she'll be performing with her jazz class at the Opera house. Peanut has just been hanging out, still being his nutty little self. He has become quite an avid reader lately, and loves story time. Still not showing much interest in using the potty yet, but hopefully soon.
Welp, we're still missin our angel AWFULLY bad these days. There's way too many cool new Thomas toys over at Toys R Us that I know Carter would have really wanted under our tree this year...
But with wonderful new jobs, healthy, happy, beautiful children, a roof over our heads, and lots of lots of loved ones (--related and unrelated), we know we're still very, very blessed and have much to be thankful for.
May you and yours all be filled with the Spirit of the season too!
Christmas In Heaven
~author unknown
'Tis Christmas in Heaven
What a beautiful sight!
It's my first one here;
Everything is all right.
The crib is adorned
With the brilliance of stars,
Wisemen have come
From Venus and Mars.
I've met all our dear ones
Who preceded us here;
The reunion was lovely,
An event full of cheer.
And tonight we'll all gather,
In reverence we'll kneel,
For the Babe in the cradle
Up in Heaven is Real.
I think of my family
that I left behind
And I pray that your Christmas
Is as blessed as mine
Please shed no more tears,
For my soul is at rest,
Just love one another;
Live life to its best.
Yes, It's Christmas In Heaven,
So I've heard them say,
Yet, Christmas In Heaven
Happens every day.
Saturday, November 11, 2006 7:12 PM CST
Peanut was supposed to go see Wiggles in concert with our transplant buddy Brina tonight, but she got sick. One of Carter's other old buddies, Kyle, AND his other buddy Kellyn are also feeling yucky in the hospital too. Please pray they all get better and get to go home soon! It makes me pretty sad that his friends are under the weather.
On a happier note, Miss Ivie got to get home from the hospital from what I understand (i need to call her Mommy for an update). And Mr. Malachi just celebrated his second birthday. Hurray big boy!
Miss Carly just got her bright red satin leotard, today, that she'll be wearing in her Christmas dance recital. Cameron just turned in his football uniform recently, since his season ended, but I think he'll be trading it for a basketball uniform soon.
Everyone in our home is busy and healthy right now, so we can't complain too much. Bobby and I have been so busy working, but we managed to steal an evening at home together tonight. Bobby made meatloaf, and we're all watching movies from Blockbuster. It feels nice to take a little break from the hustle and bustle.
Tomorrow we're going to Edmarc (hospice). They're holding a rememberance ceremony for all their kids who passed away this year. Carter and the rest of the kiddos are supposed to be featured in a powerpoint presentation. Speaking of Carter, I just recieved the sweetest package from one of the nurses at UIC. Inside was a DVD that showed Carter about a year ago. He was enjoying his day at the Pediatric Oncology Festival that Ms. Bernice had invited us to. He was giggling in amazement at the magicians, and listening in awe to Ms. Liz's son Adam sing, and of course it showed him playing on the floor in his hospital room with his trains, dragging all his tubes behind him. I have to find someone technically savvy who can make some copies of that DVD for me. But I'd be tempted to order about a thousand...lol. My sweet boy.
"Memory is a child walking along a seashore. You never can tell what small pebble it will pick up and store away among its treasured things."
~Pierce Harris, Atlanta Journal
Sunday, October 29, 2006 8:44 PM CST
Cameron and Carly had their annual Fall dance at school Friday night. Cameron is dressing as a skeleton for Halloween, Carly is a cute pirate, and Peanut is really excited about wearing Carter's old Thomas costume. I know it seems kind of weird. But its bringing Peanut a lot of fun wearing it, so at least we're getting some good use out of it again.
Its been a pretty busy weekend. Cameron also managed to squeeze in football practice Friday night because he had his weekly game yesterday morning. Then we went to Judy's house for a little birthday party last night, and today went to Toys R Us for birthday shopping. Carly turned 7!!!
We've all been hanging in there pretty good. I think the biggest thing that gets me lately is seeing so much cool new Thomas stuff in the toy stores these days. Carter would love some of the new stuff they have out now. Another thing I kind of get bummed about is that it feels like we've had quite a lot of death to deal with at work this month. But overall things have been rolling along really well. I bought my cowgirl costume for our Fall Festival parade at the hospital coming up this Tuesday. The employees all dress up and parade around for the kids. Hopefully that will brighten everyone's spirits some. I'll bet Ms. Bernice is gearing up for her Halloween parade up at UIC too... Carter had such a BALL toot tooting all over the hospital last year!
Well, our girlfriend Ivie gave us all a scare this week, but according to her dad, she's doing much better now. Thank God. Our buddy Malachi made the paper this week and seems to be doing great these days. And our transplant Brandon is making huge leaps in his recovery, so that is also very good news.
Hope everyone is enjoying the cool Fall weather and has a fun and safe time trick-or-treating!
"If winter is slumber and spring is birth, and summer is life, then autumn rounds out to be reflection. It's a time of year when the leaves are down and the harvest is in and the perennials are gone. Mother Earth just closed up the drapes on another year and it's time to reflect on what's come before."
Mitchell Burgess, Northern Exposure, Thanksgiving, 1992
Monday, October 16, 2006 8:02 PM CDT
Sorry everyone... Its been quite a while since an update...
Last week was a really good one for us. Bobby got a new job (this one should be a more permanent one). He's going to be working as a shipping agent (with big ships that come into port). He's working out of an office building downtown, and the pay is good. I also found out that they're going to make me full time at the hospital. I'm really happy about that. I'm still really enjoying work. It keeps my mind and body busy and is pretty durn fun too. My kiddos are fine too at the moment. Well, Peanut has an icky cold, but besides that good.
Last week my friends at UIC held a memorial service for Carter. I was kind of bummed because I had to work and couldn't get up there. But I kind of felt that since I couldn't be there, playing at the Children's Hospital with a bunch of kids was probably the second best place to be. I did get to hear the entire service over the phone. It was a bit overwhelming talking with everyone, and feeling so much love from a thousand miles away. One day I'll get back there, I'm sure, but I think it will take a little time. That place holds such a special, tender place in my heart. I know part of me and part of Carter will always be there in spirit. It was such a brutally hard year we spent there, but at the same time, it helped me see what beauty tragic circumstances can bring out in people.... in Carter, in our transplant buddies, in the people who work and volunteer there in Chicago, and in the people here, who had to sit back and watch us endure everything. I can't really put into words what a profound experience that was, but maybe in time, I'll be able to express it better. I constantly have vivid dreams about it. I know it will be etched in my heart forever.
This weekend we went to the cemetery and visited Uncle Jimmy, and Grandma Clark, and Nana and Papa Dexter, and Carter. Carly found a bright yellow dandelion and put it on his gravestone. His new gravestone came in. It has a train etched into it and it says "A REALLY USEFUL ENGINE"... very appropriate. Some dirt had blown onto the stone, so Cameron in his big brother way spent a long time sweeping it all off. Watching him do that reminded me so much of the way he used to always drain Carter's gtube, so his tummy wouldn't get sick. He's still such an amazing big brother. We also tied an angel and a happy meal toy that I know Carter would like to the beautiful autumn flowers that somebody gave him. Aunt Shelle maybe?
I haven't gone to his grave too much, partly because I guess its just hard, and partly because I guess I'm not convinced that his spirit is really there. One day I sure hope I can be with him again. For now I'll have to enjoy him singing to us through the windchimes, and hearing him through the giggles and jokes of his siblings (listening to them play has made me realize where he got so much of his personality), and I still treaure him through the great memories people share with me.
...The other day someone mentioned something funny I hadn't thought about in a while. When nurses constantly asked us what meds Carter was on, I'd rattle them off, and Bobby would always add, "Don't forget 'noassatall'." --sounds like a real med when you say it real fast. But he always told everyone Carter was on that because his little pants would never stay up over his little hiney. Too funny.
I have to mention a very special day coming up this week --the 19th is Sabrina's 2nd transplant anniversary. Here's to many more!!! (Check out a recent pic of her in the photos section.)
There's a popular song I know many of you have heard. I'd like to dedicate it to everyone who brought sunshine into our lives along our journey with Carter:
Kind & Generous
by Natalie Merchant
La-La-La-La-La...
You've been so kind and generous, I don't know how you keep on giving
For your kindness I'm in debt to you
For your selflessness, my admiration
For everything you've done, you know I'm bound,
I'm bound to thank you for it....
La-La-La-La-La...
Hey-hey-hey-hey-hey...
You've been so kind and generous, I don't know how you keep on giving
For your kindness I'm in debt to you
And I never could have come this far without you
For everything you've done, you know I'm bound,
I'm bound to thank you for it....
La-La-La-La-La...
Oh,
I want to thank you for so many gifts you gave, with love and tenderness,
I wanna thank you
I want to thank you for your generosity,
the love and the honesty that you gave me
I want to thank you, show my gratitude, my love and my respect for you,
I wanna thank you
Oh I want to thank you, thank you, thank you, thank you, thank you,
Thank you...
Friday, September 29, 2006 8:55 PM CDT
We're still busy round here. Bobby finally got his teeth pulled today. I can tell he feels better already. He's been in so much pain lately, so that was a relief.
Cameron is still busy at football. He's spending the night with some football pals tonight. He also started playing the violin at school, which he seems to really like so far.
Carly is doing really well in school too. She started dance class last week. She's decided to take jazz this time.
Peanut is still acting like a pretty typical two year old, temper tantrums and all. He has this major seperation anxiety thing going on that really gets him going sometimes.
I've still been busy at work. I'm working as sort of a substitute filling in for other people, which has been kind of neat, because I get to work in several different units. So far I've found that I really like hanging out with the oncology (cancer) kids. I know that probably sounds pretty weird. But I guess I just have a lot of empathy for them. Many of them have central lines and frequent hospital stays, and I guess I can relate to all that. But what I really love about them is their resilient spirit. Many of them go through so much, but are so spunky and so full of life. Remind you of anyone???
Well I wanted to write to tell you about a special service they held today at work --the annual "Butterfly Promise" service. Its a memorial service for kids who have passed away this past year, and who's parents decided to donate their organs. Our hospital has a special garden to commemorate our organ donor kids with butterfly memorials.
(--The garden is in a beautiful little courtyard outside the center of the hospital, where they have many memorial bricks, and trees and flowers. Its a place most of us sneak away to at some point, a very natural, green place amidst the sterility of the hospital.)
...Well anyway, I have to say that it was a ROUGH service for me to get through, seeing all those parents and feeling their loss so deeply. There were very few dry eyes in the room. But it was also very sweet. Organ donation has affected us so personally and means so much to us, those families really are heroes to me. Our transplant buddy Sabrina was also there, and her Momma talked about her journey, one that has shared a lot of similarities to Carter's journey, but that has so far had a wonderful ending. Her mom also read the book I wrote about Sabrina in Chicago last Winter, and shared about what a difference organ donation has made in Sabrina's life. That was also extremely touching. (I just wish Sabrina hadn't slept the whole time. I really wanted to play with her!!!)
Welp its been a long day, and tomorrow will probably be another busy one. So better get some shut eye.
Four candles slowly burned. The ambiance was soft, one could almost hear them talking…
The first candle said, “I am Peace!” – “The world is full of anger and fighting. Nobody can keep me lit.” Then the flame of Peace went out completely.
The second candle said, “I am Faith!” – “I am no longer indispensable. It doesn’t make sense that I stay lit another moment.” Just then a breeze softly blew of Faith’s flame.
Sadly the third candle began to speak. “I am Love” – “People don’t understand my importance, so they put me aside. People even forget to Love the people nearest to them, I haven’t the strength to stay lit.”
And waiting no longer Love’s flame went out.
Suddenly…. A child entered the room and saw the three unlit candles…
And said, “ Why aren’t you burning your supposed to stay lit till the end!”
Saying this the child began to cry…
The fourth candle answered “Don’t worry I am Hope!” – “While I am still burning we can still relight the other candles.”
With shinning eyes the child took the candle of Hope and relit the other candles…
The flame of Hope should never go out from your life.
…and with Hope each of us can live a life of Peace, Faith & Love!
~author unknown
Monday, September 18, 2006 7:37 PM CDT
Its homework time here at the Wells house. But Carly and Cameron are fussing so much at each other at the moment, I don't think much is getting accomplished. We just got back from Cameron's football practice. He had his first game on Saturday (didn't win, but did very well). Boy, you should see him tackle! He's been playing so hard his uniform is literally falling apart.
Bobby is still busy at work. He's been working so hard he really hasn't had time to think about much. The job has been a big help to us though.
Peanut has been busy playing with cars, just like Cameron used to do. He says "Hummer," "Cool Bus" --school bus, and "Cwut" --truck now.
Carly is getting geared up for dance class. And she really likes school and her new teacher this year.
I started back working at the Children's Hospital again last week. Its been very fun catching up with old friends and nice making new ones. I know a lot of folks have been worried about me, mainly emotionally, going back to work there. Welp, seeing kids with tubes has been the norm for me for so long it really doesn't even phase me much. I know that's sounds pretty sad to say, but pretty true. Most of the kiddos I've worked with so far actually have more energy than me anyway...hehehe. I will admit though, that I'm a little technically challenged and trying to work the Play Stations has been a little tough. And subtle little things do tug at my heart strings from time to time, like seeing Thomas movies and toys around the playroom or walking past room 736 (Carter's first and last room on 7C). Those things don't make me extremely upset or anything, but do give me butterflies in my stomach sometimes. But most of the time, I've been having lots of fun there.
Wow... this update has gotten pretty long. I intended when I got on here to tell everyone about the really cool past couple of days we've had.... The other night, Malachi and Rachel and "Grandma" Candy and "Grandpa" Dennis all came to town from Illinois & Indiana. Yesterday morning we found a First Church of God Anderson (just like the one they go to at home). The church is just a couple of blocks from us, so of course we went there. And yesterday was such a gorgeous day, we went and took a ferry boat ride and went for lunch and did a little shopping at Waterside. We all sat outside by the big lighthouse at High Street, and Malachi seemed to really enjoy it, and the rest of the kids ran around and around and around. Then today, Peanut, Rachel, Candy, Malachi, and I all went to get some fresh Chesapeake Bay seafood for lunch. The boys thought it was so cool to feed the seagulls french fries. Then tonight after the rest of the gang finished work and school, we had a little picnic at the hotel, and afterward we all headed over to watch Cameron play football. I enjoyed their visit so much. They really are some of the nicest folks.
I talked to Kara (Ivie's Momma) this weekend too, and she said Ivie had a little cold but is back to climbing up on the coffee table again. And our transplant buddy Sabrina just started preschool recently and also seems to be well. But from what I hear our buddy Brande could really use some prayers right now though.
Well, this has gotten really long. I guess its been too long since I updated. But just wanted to let everyone know, overall all is well around here. Yes the low moments do come over us from time to time, but overall all is well.
"Do not stand at my grave and weep
I am no there, I do not sleep
I am 1,000 winds that blow
I am the diamond glints on snow
I am the sun on ripened grain
I am the gentle autumn rain
When you awaken in the morning's hush
I am the swift uplifting rush
Of quiet birds in circled light
I am the soft star that shines at night
Do not stand at my grave and cry
I am not there; I did not die."
~anonymous
Wednesday, September 6, 2006 8:08 PM CDT
All Is Well
Death is nothing at all,
I have only slipped into the next room
I am I and you are you
Whatever we were to each other, that we are still.
Call me by my old familiar name,
Speak to me in the easy way in which you always used
Put no difference in your tone,
Wear no forced air of solemnity or sorrow
Laugh as we always laughed at the little jokes we enjoyed
together.
Play, smile, think of me, pray for me.
Let my name be ever the household word it always
was,
Let it be spoken without effect, without the trace of
shadow on it.
Life means all that it ever meant.
It is the same as it ever was, there is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you, for an interval, somewhere very
near,
Just around the corner.
All is well.
~Henry Scott Holland
Monday, September 4, 2006 5:17 PM CDT
Happy Labor Day everyone. I just returned from a weekend getaway to Grandma's in the mountains. It was so pleasant up there... very, very quiet... lots of moo cows, mountains, and green trees. It was nice to get away for a little bit, and have some of Mom's home cookin again. Have started a new book that a good friend gave me about the different ways which people grieve. Its been pretty eye opening. Its been helping me understand a lot of my feelings and a lot about how others around me might be grieving. I have also talked a little with another mom who went through a very similar circumstance. That was good. I'll probably do some more of that in the future. I understand there are some good support groups around, and Edmarc is still here holding my hand, and pointing me in the right direction as far as that goes. Have finally picked up my needlework again and plan to finish some Christmas presents. Many of you in Chicago know that needlework was my "art therapy" while I was there, so it will be good if I can find time in my busy days to keep going with that again. (Maureen, I haven't forgotten your order...hehehe) I haven't heard a lot from our transplant buddies from UIC, so I'll probably be giving them a call this evening. I also get the pleasure of babysitting my new nephew tonight, baby Elijah. My sister is here visiting for a couple of days. Its been a nice, peaceful weekend, but there's a crazy, busy week planned, starting tomorrow. Oh well, glad I got to catch my breath for a minute anyway.
Please send up a prayer for a few of my internet pals. Terran in Florida just recieved transplant number two, and Brandon is still spending time in Seattle --all the way from Tennessee, still trying to conquer rejection.
Farewell
by Anne Bronte
Farewell to Thee! But not farewell
To all my fondest thoughts of Thee;
Within my heart they still shall dwell
And they shall cheer and comfort me.
Life seems more sweet that Thou didst live
And men more true Thou wert one;
Nothing is lost that Thou didst give,
Nothing destroyed that Thou hast done.
Wednesday, August 30, 2006 8:11 PM CDT
Little Angels
~author unknown
When God calls little children
to dwell with Him above,
We mortals sometimes question
the wisdom of His love.
For no heartache compares with
the death of one small child
Who does so much to make our world
seem wonderful and mild
Perhaps God tires of calling the aged to His fold,
So He picks a rosebud before it can grow old.
God knows how much we need them,
and so He takes but few
To make the land of Heaven
more beautiful to view.
Believing this is difficult,
still somehow we must try.
The saddest word mankind knows
will always be "Goodbye"
So when a little child departs,
we who are left behind
Must realize God loves children,
Angels are hard to find.
Thursday, August 24, 2006 8:56 PM CDT
Not too much new here in the Wells house. We've been kind of busy though. Bobby is very busy with his new job (working about sixty hours a week). I started back to work too part time at the daycare center, and I'll be starting back at the Children's Hospital in a few weeks, which I'm really excited about. I also started back to school at the local community college, and the kids will start back to school too after Labor Day. Cameron is busy with football (except he hurt his knee last night, but he's okay). Carly will be going back to dance class soon. Peanut is finally talking in sentences now. --He's come a long way.
Everybody seems to be hanging pretty tough (except for me...hehe) I mean I'm hanging pretty tough too I think, but I've definately had my bad days/bad moments. Laundry seems to really be a trigger, I've discovered. I have a hard time folding clothes these days. I started to notice a pattern that I kept getting pretty upset at laundry folding time. I started thinking about it, and I realized that laundry was always something I did for my boy. Even when he was on the 7th floor at the Childrens Hospital years ago and the nurses did a lot of it, I always had some to take home and do (he made a lot of it those days). And even when he was sick, sick, sick in the PICU up in Chicago, there was always at least a blanket or something to carry back to the Ronald McDonald House to wash. I keep looking around for something that he wore that I didn't get around to washing yet, but I think there's nothing left now. That just makes me so very very sad. I miss him so much. Its unbelievable.
...Well, not trying to make this too depressing here. I did want to thank everyone for making this process a lot easier for us. Everyone has been so wonderfully supportive. We got so much physical support those first few weeks after he passed, everyone just carried us through. And I've been getting so many cards and emails lately. Its been bittersweet going to the mailbox everyday. I've really enjoyed people sharing their memories of Carter, bringing up little things that I'd forgotten about.
Welp, we'll keep you posted from time to time to let you know how we're doing. I know this sounds crazy, because when I was up there in Chicago all I wanted to do was come home. But I miss all you Chicagoans tremendously. Please keep in touch when you can. You're all heavy on my mind and in my heart.
Please send up a prayer for our continued strength and please pray for our transplant buddy Brandon tonight. Sadly, he's in Seattle right now fighting severe rejection after having been well at home for years. I know its gotta be very tough on him and his whole family.
"Perhaps they
are not stars,
but openings in
the Heaven
where the love of
our lost ones
pours through
and shines upon us
to let us know
they are happy."
~Author Unknown
Wednesday, August 16, 2006 11:57 AM CDT
Post Script: Boy who endured three transplants ' was a shining light'
Carter Wells
By FRED KIRSCH, The Virginian-Pilot
© August 16, 2006
CARTER WELLS 2001-06
IN HIS SHORT LIFE, HE ENDURED THREE TRANSPLANTS AND MANY OTHER OPERATIONS. "HE TOUCHED SO MANY PEOPLE," SAID MELISSA WAIDE, A PEDIATRIC NURSE PRACTITIONER, WHOSE DAUGHTER UNDERWENT A SIMILAR INTESTINE TRANSPLANT. "HE WOULD BE IN THE WORST PAIN, AND HE WOULD STILL WANT TO PLAY. HE WOULD STILL BE HAPPY." CARTER IS ALSO SURVIVED BY SIBLINGS CAMERON, CARLY AND CHRISTIAN.
NORFOLK - Carter Wells endured three transplant operations, 10 other major surgeries, and more than 70 medical procedures.
He died Aug. 3 at age 5.
Carter was born with gastro-schisis, in which the intestines grow outside the abdominal wall. Normally, they can be inserted into the abdomen after birth, but Carter's intestines were tangled in the womb, causing much of the intestines to die and leaving him unable to absorb food.
"Carterman," as he was known, spent his first five months at Children's Hospital of The King's Daughters. In all, he would be hospitalized for nearly four years, enduring diarrhea, vomiting and temperatures as high as 107, said his mother, Nichole Wells.
Carter was fed intravenously until his liver began failing. In January 2002, he underwent his first transplant, at the University of Illinois Medical Center. He received part of his mother's intestine.
Carter charmed and amazed those he met. He had soft brown hair, wondrous eyes, a pair of enormous dimples and "a wisdom beyond his years," said pediatric nurse practitioner Beth Bonifas, who was with Carter the day he was born and the day he died.
"He was a shining light - never down," Bonifas said. "He really thought of himself as like everyone else."
After the transplant, Carter had "the golden year of 2004," his mother said. He had no tubes sticking out of him. He rode the bus to preschool and, for the first time, celebrated his birthday out of the hospital. He ate pizza.
He met his buddy, Barney the dinosaur, through the Make-A-Wish Foundation. "It was his year to be like a normal kid," his mother said.
In April 2005, Carter began losing weight. In December, he received a second transplant, this time from his father, Robert. After a third transplant failed, the family was running out of options. There was little chance Carter could survive another operation. His veins had almost completely shut down.
It was time, Nichole Wells said. Carter died at home with no tubes in him.
"There were so many silver linings," she said. "We learned so much from Carter and met so many great people on his journey."
News researcher Peggy Earle contributed to this report.
Reach Fred Kirsch at (757)446-2484 or postscripts@pilot online.com.
Sunday, August 13, 2006 3:21 PM CDT
Prayers For Carter
by Chaplain JB Rashad
I just finished walking into Carter's room making a routine visit. I noticed Nichole sitting quietly trying to keep from going insane while Carter, his brother Cameron and sister Carly cover as much play area as possible. Toys are clanking. Children are laughing and playing.
"Carter, Carter ... Don't go out there." "You have a line, remember?", as Nichole bellows to her beloved son. "We don't want that line to come out, do we?" Carter looks over to his mother with a "There she goes again with that line stuff again" look. Carter gets smart as he edges towards the door by thinking quickly what might get my atention. He leads into what is now an infamous "Knock, Knock" joke.
"Knock, knock," shouts Carter. Now, I'm thinking where did he get this from and am I being set up for what will inevitably leave me to be the joke of all jokes? Certainly. "Ok, Carter ... who's there?" "HIPPA." "HIPPA, WHO?" Carter blasts back and says, "I can't tell you!"
The crowd around him including his captivated almost admired audience of nurses, housecleaners, and of course, mother, brother and sister burst into laughs. "Carter," I say, "good one, good one."
He then goes to perform something a nurse taught him by motioning with his hands, "You ... drive... me... crazy!" Again, I say, "Good one Carter, good one."
Life is always exciting and experienced with great vigor when you live it to the fullest. Embracing the present with no other expectations than to enjoy what is, adds to the richness our lives have to offer.
I pray for nothing more than to say hello to each waking moment. The reality is that life is mysterious, puzzling and often unclear. Carter mastered the love of life's ambiguity instead of the concrete answers of his world. He always invited others to join him on his journey promising nothing but the essence of what life is all about. Do you know what that is? It is the making of fond memories. This is really all we have. Carter knew this at birth compared to what may take a lifetime for many adults to discover. What Carter is teaching me is that life is meant to savor, enjoy, love and enjoy the present and not be so concerned about what will happen later. Perhaps the journey is our destination.
I think a knock, knock joke may be just what the doctor ordered. Those type of jokes are very timely. I get a little anxious when hearing these jokes; wanting to know the punch line before the end and hesitantly offering myself to be set up for what is to be a funny closing at my expense.
You see life is also this way. We want to know what lies ahead of us before we participate in anything risky. We dislike mystery to the point we perhaps pass on what may be a wonderful life trail. Even if it a short path, many of us will never discover our full potential. Never able to see the forest for the trees because of the fear of an occasional knock, knock joke. Not Carter!
In closing, people say at these times, God won't give you more than you can bear. Well, Carter ate bears for breakfast! He became the bear in a dim and grizzly forest of medical doubts. He climbed the tallest trees despite the thorny mortality rate given him. You know while climbing those trees he began to see like the eagles and the hawks with their broad and expanding wings. Carter reached out to many expanding his wings from Norfolk to Chicago and back. Those wings never grew tired. He even gathered the wisdom of the owls on those tree branches by helping those make uneasy decisions regarding his healthcare.
Thank you, Carter. My prayer is one of life's joys embracing sorrows. Even good memories are accompanied by challenges. Every photo taken has to have a contrast of light and dark. However, I choose, yes, I choose to live in the light of my full potential and so should you. Learn what Carter has taught you and place him in the heaven of your memories and not the darkness of life. And if you listen to your heart, you will always hear a knock, knock joke when you need it. Answer it and laugh. Laugh with no expectation other than to have the opportunity of experiencing something wonderful awaken in you.
This time Carter will say, "Good one. Good one."
So be it!
Tuesday, August 8, 2006 11:45 PM CDT
My heart got very heavy tonight thinking about how I'd spent all those nights up in Chicago talking to Miae, and laying down next to Carter in his bed. He'd always roll over and put his hand on my cheek, and sometimes I'd get an "I love you Mommy" or a "Will you sleep with me Mommy?" I already miss him so. But despite my low moments, I feel obliged to share some of the really bright moments of the past two days.
Last night we had a visitation at the funeral home. So many people came... people I hadn't seen for years. It was truly amazing to me... doctors, nurses, old friends from work, babysitters, teachers from Cam and Carly's school, lots of family, and even Carter's preschool teachers. Our chaplain from the Children's Hospital gave a wonderful prayer which I'd like to share here, but I'll wait and get his permission first.
Today was much of the same... a day filled with love. We had some surprise visitors... our Child Life Specialist from Chicago, Ms. Bernice, and one of Carter's favorite visitors while we were in Chicago, Nurse Nancy (the clown). It was incredible that they were able to make it.
The service was beautiful. The choir sang "Jesus Loves Me" and "Jesus Loves the Little Children" and of course, Carter's "Song of Love" was played. Our babysitter, Becky, who has been part of the cement of our family, read a special poem. And at the burial, our pastor asked the Waide family (Sabrina's family) and the Duncan family (Ivie's family) to come forward, and he talked about how Carter had kind of paved the way for them. ...That was the moment I really lost it. I just can't tall you how good it was to have them there. It truly touched my heart, especially since the Duncans came all the way from Indiana to be here with us. I'm just so very thankful.
We placed in Carter's casket:
...a clown nose that Nurse Nancy gave us. He would have loved that. The jokester that he's been lately.
...the Thomas pocket watch he treasured
...his toy train "Duck" and a picture of the duck that we found out by the porch right after Carter died. --She's been coming around to visit eversince.And for his casket cover we used his Thomas blanket.
We all wore green ribbons in honor of organ donation. And I've worn the blouses that Asha gave me yesterday and today. Carter wore a Thomas shirt. I don't think things could have been more beautiful. We feel God's love surrounding us and its helped to keep us strong.
"We thought we would teach our children about the world but ended up teaching the world about our children."
~Jayna Sattler, author
Sunday, August 6, 2006 10:18 AM CDT
Carter's obituary from the Virginia Pilot:
Carter J. Wells
NORFOLK - Our sweet boy Carter James Wells, 5, flew to heaven Aug. 3, 2006. He passed away peacefully at home in the arms of his Mommy and Papa, after having survived three intestinal transplants.
Born in Norfolk, He spent much of his time between Children's Hospital of the King's Daughters And University of Illinois Medical Center at Chicago where he stole the hearts of his many nurses and caregivers. He was an avid lover of Barney the dinosaur and Thomas the Tank Engine. He also loved playing at home with his siblings.
He leaves to cherish his memory his mother, Nichole Wells, his father, Robert Wells Jr., and three siblings Cameron, Carly and Christian Wells, all of Norfolk, and leaves a host of other relatives and unrelated "family."
In honor of Carter and organ donation, the family has requested, if possible, please wear a green ribbon to the funeral.
The funeral will be held at noon Tuesday at Queen Street Baptist Church in Norfolk with presiding pastor Dr. Peter Wherry. Interment will be held afterward at Rosewood Memorial Park in Virginia Beach. A viewing will occur from 3:30 to 8 p.m. Monday at Carlos A. Howard Funeral Home, Norfolk Chapel. The family will assemble at the funeral home at 11 a.m. Monday for the procession.
Memorial gifts may be made to CHKD, 601 Children's Lane, Norfolk, VA 23507 or to Edmarc Hospice for Children, 516 London St., Potsmouth, VA 23704.
The family would like to express tremendous graditude to the CHKD staff, the staff of UIC Medical Center and to Edmarc Hospice for Children.
Thursday, August 3, 2006 9:26 AM CDT
Carterman flew to heaven this morning at 2:22 AM. He went peacefully at home in the arms of his Mommy and Papa. We are holding up well so far thanks to continuing loving support of so many angels here on Earth. We will miss our sweet boy so much. Thank you so much for letting me share him with all of you.
Tuesday, August 1, 2006 6:20 PM CDT
Yesterday seems like 100 years ago and Sunday feels like it was 1000 years ago....
We had a little pool party at out girlfriend Sabrina's house on Sunday. The kids are such fish! Peanut wasn't afraid of the water at all which surprised me, and Carter splashed around a little too. He had such a ball. But the cutest thing was Sabrina kicking around with her little water wings on. Carter got to eat his mustard and salad dressing and licked some s'mores. It was a wonderful evening. One I think I'll remember for quite a while.
Then yesterday happened. We had a care conference with some of the people who have taken care of Carter for a long, long time. It was such a good conference. They were so honest and open as to what they feel our choices are now for Carter. These are things Bobby and I had been discussing at home for quite a while. We felt very relieved to get things out in the open, but we knew too that we had some tough decisions to make.
Then when we got home last night, Carter decided to help us along in our decision making process. He decided to get rid of his line. We walked into the living room and found Carter's line was completely out.
You see, some of the things we talked about yesterday was how difficult it would be to get another line in, and if he were to need an atrial (heart) or a hepatic (liver) line, how difficult it would be to go home with that kind of line. We also discussed the possibility of another trnsplant, which seems bleak to everyone, given his HIGH chances of rejection and his lack of line access. And we also talked about how we could start doing things "for" Carter and not "to" Carter anymore....
Well Bobby and I have decided that the best thing for our family and FOR Carter at this point, would be to keep having fun at home. Another transplant would require us to move away to another city at this point, and we've done enough moving around this past year. I guess what it all boils down to is that we're cherishing our time at home, and we're very, very tired of fighting and hurting and dissapointment. We just want to be happy with Carter for whatever time God lets us.
So we've decided with the help of our hospice program to stay at home, and not do anymore surgeries including lines. Everyone in Chicago was telling me that Carter needs a break. I think we all do.
I know some of you may be heartbroken and some may dissagree with our decision, and some may wholeheartedly understand. But no matter what you think, I would like to ask you to pray for strength for our family as we try and give Carter a break and let him go home home. Please also keep our transplant friends in your prayers. Pray that they continue to have many successes and that we all can continue to learn from each other.
Blessings Be, Nichole & Carter
Sunday, July 30, 2006 2:49 AM CDT
Today was pretty quiet. Papa worked. The rest of us mainly hung out at home. The ice cream man has been bringing his truck around a lot lately, and Cam loves to run out and get treats for everybody. So when Bobby was at the dollar store the other day, he bought some plastic ice cream toys and some play money. The kids have been having a ball putting up Peanut's truck tent (its really a fire truck tent, but they pretend its an ice cream truck now.) They taped up a paper sign to it with prices and everything. Cameron is usually the ice cream man (he wears a funny hat), and Peanut is the driver. Carly carries all the play money in her pink purse and Carter tells her what to order. We also ate real ice cream tonight too. My favorite desert in the summertime is sherbet and strawberries...yummy. Ice cream is a pretty good food for Carter right now too (it drains really well.) Well, we'll be getting out and about tomorrow, doing some visiting, and we have medical stuff to do early in the week, so we'll keep you posted.
P.S. I forgot to mention... Carter's girlfriend Ivie celebrated her first transplant anniversary on Friday... A year ago she got part of her Mommy's liver... Boy was she sick... I'm happy to report she's doing awesome now though! She's been spending LOTS of time at home lately and has learned how to walk. The link to her page is below, if you want to check her out. Happy anniversary sweet girl!!!
Thursday, July 27, 2006 7:25 PM CDT
Its been kind of busy this week. Last night we went to football practice again, and Cameron got fitted for his uniform. He was pretty happy... He put on his jersey first thing this morning and wore it around all day today.
I hauled all four of em' to the dentist this afternoon. With the life we've had lately, they were WAY overdue! The boys' teeth are fine. Carly, unfortunately, needs a tooth pulled --yuck. And once again, Carter has to be special. They said because of all his health needs, they're not sure if they can accomodate him at the office we went to, so I have to find a pediatric dentist who's more experienced with special needs kids. They said his teeth looked okay though.
We went to CHKD the other day for TPA, but while we were there they did a chest xray, and found that his line had moved to a different place! We think it may have gotten snagged on something, which caused it to move out of place, because when I went to do his dressing change the other morning, one of the sutures was out. He never complained one bit about anything though. -You'd think that would have hurt!
But anyhoo, they were uncertain, at first, whether we could even safely put TPN through the line anymore. They first thought the line might need to be replaced. (I was pretty worried.) But after a cardiology consult and an echocardiogram on Wednesday, they decided that the line had moved over into a nice big vein nearby and that there is still plenty of good flow down to the SVC (--where it needs to go.)
So to make a long story shorter, we're good for now. --Thank God. I also found out that when Carter does need another line in the future, the cardiologists here in Norfolk may be willing to help us try to get another one again (versus having to go immediately back to Chicago.) Thank God for that too!
So we've had trips back and forth to the hospital this week, but at least they were back and forth to HOME too!!
---Somebody asked me where Peanut was when the beach picture (above) was taken. He was clinging for dear life to his Papa's arm...lol. He's scared to death of the water at the beach for some reason. The waves, I think? But hoping after a few more beach trips, he'll come around.
"There's a calm surrender
To the rush of day
When the heat of the rolling world
Can be turned away
An enchanted moment
And it sees me through
It's enough for this restless warrior
Just to be with you
And can you feel the love tonight?
It is where we are
It's enough for this wide eyed wanderer
That we got this far
And can you feel the love tonight
How it's laid to rest
It's enough to make kings and vagabonds
Believe the very best."
~Elton John
Monday, July 24, 2006 11:51 PM CDT
Carter was so excited about going to his big brother's football practice this evening. It was all he kept talking about all day. When we got there, he played on the playground set they had there with Carly and Peanut. And even though the other kids there were climbing and running all around him, he didn't care. I think he was just so happy to be doing a normal kid thing like that. He was very pleased at himself for making it back and forth across the wiggling bridge. We went and sat down in the shade on a big blanket and watched Cameron practice. Peanut kept immitating the exercises the team was doing, and Carly just kept doing cartwheels the whole time. Carter hung out on Papa and Mommy's lap and drank diet Pepsi and water. He kept talking about the playground set and how he wanted to go back, so we went and spent some more time on it after Cameron's practice was over. It was pretty nice.
Tomorrow we're headed back to CHKD to get some more TPA put in his line. I don't know if it has to do with the clot that is forming around the line or what, but its not giving us a blood return again. --I think this is the third or fourth time he's had TPA put in it. But its okay. I just hope the TPA keeps working, because otherwise Carter will have to get poked for lab draws... not fun. And we want the line to keep working well too, so its good they're getting us in.
Your time has come to shine.
All your dreams are on their way.
See how they shine.
If you need a friend
Im sailing right behind.
Like a bridge over troubled water
I will ease your mind.
Like a bridge over troubled water
I will ease your mind.
~Paul Simon
Sunday, July 23, 2006 4:34 PM CDT
As you can see, we finally got to the beach! Not too much new here. We got a call on Friday saying that his cultures from discharge day (Monday) were still growing yeast. So our nurse from Edmarc came out and drew some more cultures. We're still giving the amphoterricin and voriconazole, so we'll just wait and see what these cultures show. He's acting great...no fevers. So we're just tryin to enjoy life at home while we can. Last night, we went over to Aunt Judy and Umiller's house and ate KFC (Carter had mashed potatoes and gravy). We played Carter's Song of Love for them and everybody danced around to it. Right now Papa is out working on the ferry boat, but we'll have to find something fun to do tonight when he gets home. Probably something inside though because its kind of rainy. Oh forgot to mention, Cameron is now an official member of the Gators football team. We got him all signed up on Friday. He was a little sore after his first practice, but he's really excited about playing. ...Something he's wanted to do for a while now.
"The happiest moments of my life have been the few which I have passed at home in the bosom of my family."
Thomas Jefferson
Wednesday, July 19, 2006 6:15 PM CDT
Home again, home again... jigetty jig. They sprung us out last night. We have to give Merrepenum, Voriconazole and amphoterricin locks for six weeks, and we have to redo cultures after that to make sure everything is really clear. Its taken me all day to figure out how I'm supposed to do those meds. They're a little trickier than I'm used to, but I think I've gotten it down now. Thanks to everyone who prayed for the line!
I found out that Carter had already gotten his "Song of Love" (www.songsoflove.org) that Ms. Bernice requested for him. (it was put up on a shelf collecting dust, because Bobby didn't know what it was...lol) It is sooooo awesome!!!!!!! We played it for lots of folks at the hospital yesterday. If I can find a really smart computer guy, then maybe I can upload it to his webpage sometime. But for now, imagine a really smooth Destiny's Child type song. Here are the lyrics:
"Carter Wells" by Songs of Love
Carter, We know you like
collecting, playing and doing things
playing with Thomas Tank the Engine
and we know you like those trains
Playing with your brothers and sister
and watching videos
and your Mama and Papa love ya
and they want everyone to know
Carter, you are our favorite
this is how we feel about you
we're loving you everyday, yeah
so we bring it with a love so true
an angel sent from heaven, bright like the stars above
and God and all his angels sing
Carter, don't ya know you're loved
Veggie Tales and Bob the Builder
and watching Barney, too
listening to music and dancing
are the things you like to do
Carly, Christian and Cameron
Mama and Papa love you so
Their hearts are so filled with your love
They're never gonna let ya go
Carter, we love ya baby with a love that's strong
and it will last forever and ever and all day long
so when ya need me, call me and i'll be there
and the love of God will cover you with tender care...
Monday, July 17, 2006 1:47 AM CDT
Today Carter...
...woke up way before me making lots of noise, then decided to nap when I finally got up.
...was VERY excited that Peanut and Carly came to visit.
...belly giggled hard when Peanut "wrestled" with him --really just kind of climbed on him. Yes, it made me pretty nervous, but I just couldn't break it up they were having too much fun.
...discovered he really likes orange Kool-aid Jammers, and that he can have a whole bag of chips to himself now. He licks and sucks the cheese stuff off, and throws the chips away. Gross, i know, but it made him so happy. I just thought I'd share.
...kissed Peanut's head when he got a boo-boo.
...mastered another knock-knock joke.
...had everyone on the floor in a panic when he set off the emergency alarm in his bathroom. Well, actually I'm not sure if it was Carter or Peanut who set it off. They were playing some sort of game while I was talking to his nurse, and the next thing I know, everyone came running!
...managed to break a connector for his g tube/Foley bag (that the hospital didn't have and had to go all the way next door to the adult hospital to get) and also blew through two Foley bags today. Yep, it was kind of messy.
...worked on winning the hearts of several new nurses on 7C.
...played Movie theatre. Tonight's show was "It's Great to Be An Engine." We turned out the lights, and he pretended his ice chips were popcorn.
...made me read ten Thomas books before bed.
I'd definately say he's still acting pretty normal. I'm pretty hopeful that we can treat through this yeasty beasty. His doc said today that it wasn't a really dangerous yeast that's growing, so that was good news. I'm hoping for just a few more days in "Club Med."
"There are only two lasting bequests we can hope to give our children. One is roots; the other, wings."
~Hodding Carter
Saturday, July 15, 2006 9:49 PM CDT
Well, we've got some answers as to why Carter was spiking again yesterday... Not really the answers we wanted to hear, but answers, nonetheless. Carter is now growing yeast in his line. We're not sure what kind of yeast it is yet. Often yeast is something that is very difficult to treat in a line, but they sure are being aggressive and trying hard, which I'm really glad about.
They seem to have cleared the other bacteria that was growing in his line earlier in the week. It was a resistant bug that he had also grown a few months ago in Chicago. One of the docs thought it might have been a "transient" bug (versus a big colony of bugs) that was still floating around in his system from before for some reason. He didn't become very ill from it, and they treated it quickly and easily. So as long as it doesn't come back, that was good news.
We also found out something else new... They did a PVL study, and found blood clots are forming around his line now too. They're a bit worried about that, because clots can often harbor bacteria and reinfect the line over and over. I know they want to take that line out so bad, but they just don't have anywhere else to easily put one.
Okay, so here's my prayer request... I hope they can treat through the yeast extremely quickly, so they won't have to pull the line out. And I'm hoping that the clots won't cause us recurring problems in the future.
My goal was to keep him home and healthy on TPN for as long as possible. I'm really kind of blown away that he's having these problems so soon after our return home. He seemed to be doing pretty well with his lines lately. But I'm trying just to hand it over to God and not worry too much about it. As long as he still has the line in, and keeps on acting as happy and healthy and normal as he is, I know we're okay.
... He's feeling great and is very stable, despite how scary everything sounds. When his heartrate started going up last night, there was even talk about sending him to the PICU. But go figure, he woke up this morning without a fever. He's been walking around and talking nonstop, and having lots of fun like he always does today, so even though I'm asking for a few extra prayers, we're still hanging in there pretty good. You know Carter. He loves to keep everyone on their toes.
Friday, July 14, 2006 2:52 PM CDT
We were supposed to be discharged this morning. Carter hadn't had a fever all week. Cultures were all been negative, except for the first set, which they've been treating him for. Then, this morning he decided to spike another temp. I think he likes the hospital scene way too much. They did a PVL study of his vein where his line is this afternoon, and they said that it looks like clots are forming around his line. I think they're afraid that the clots are the source of the bacteria making him sick. But I don't know what they're going to do about it. Its not like they can just pull his line out... Sigh... If its not one thing its another, I guess.
Besides that though, we're holding up pretty well. He's feeling really good despite all that's been going on. We've consulted with some of the educational hospital staff this week, who are going to help me get him into school in the Fall. During his PT eval he got to get out of the room and walk the halls a little bit, so that was fun. Today Grandma Bert and Aunt Tracie came to visit for a while. And he's been playing a lot with his trains, of course, and has been getting pretty creative. He found out that the strings off of the hospital masks make great pulleys, and he also found out that syringes are great for giving his trains baths. They have lots of mustard here too, so that has also been keeping him happy. Mustard is one of his favorite meals now...that and salad dressing...lol.
Just hoping this little set back won't set us too far back.
"Believe, when you are most unhappy, that there is something for you to do in the world. So long as you can sweeten another's pain, life is not in vain."
Helen Keller
Tuesday, July 11, 2006 2:38 PM CDT
On Sunday, Bobby and Cameron spent a guy day together fixing up the car. it was a great thing they did, because...
Yesterday, we were all at Shelly's house getting ready to go to Nana's funeral. Bobby was putting his suit on. (He was a pallbearer.) Carter was sitting in the den shivering, and said, "Mommy, I'm cold." I knew that was bad, because the room was pretty warm. And sure enough, within five minutes, he was wretching and his hands were turning bluish. Bobby had to rush us back home before rushing himself back to the funeral home. I took Carter's temp and it was 104.4 by then, so I had to rush us to the hospital. I think I cried the whole way.
Usually, Carter getting sick doesn't get me down so much. But sickness can just be so mean sometimes. You make so many sacrifices. But when you can't even go to a flippin funeral when you want to, well that's just sad...
But nonethelesss, today is a much, much better day. We're back in the hospital again with gram negative bugs growing from both ports in his central line. But the fever is gone, and Carter, like he often does, is playing in his hospital room, acting like nothing ever happened. So hopefully, they'll be able to treat through the infection and save the line. The fact that he's feeling much better has me cautiously optimistic.
"One day, in retrospect, the years of struggle will strike you as the most beautiful."
— Sigmund Freud
Saturday, July 8, 2006 4:04 PM CDT
Nana Dexter passed away at 7 pm on Thursday evening. She passed peacefully, and she was surrounded by grandkids and all seven of her children. I can only hope that I have a similar experience one day. Please keep praying for the family.
Our car conked out on my way home from the hospital, so now I'm feeling a little cooped up in the house. But we think it just needs a new alternator, so I think Bobby is going to fix it himself. I guess that's a benefit too of having a taxi driver husband. If I really need to go somewhere, we have a back up car.
...The hospital magnetism still hasn't ended. I had to take Carterman down to CHKD yesterday. One of his lumens on his central line got clotted off. So we had to go get some TPA put in it. (They said he was too young to have it done at home.) Thankfully, it was a very successful outpatient trip, and the line is working beautifully again. We ran into a few old hospital buddies, and had a good long talk with the IV nurse, who turns out is from Chicago and used to work at Rush and Cook County (right next to UIC). Small world.
"One hundred years from now, it will not matter what my bank account was, how big my house was, or what kind of car I drove. But the world may be a little better, because I was important in the life of a child."
-Forest Witcraft
Thursday, July 6, 2006 12:03 AM CDT
Carter had a visit from the social worker from Edmarc this morning (www.edmarc.org). He's so excited because she brought him a really nice train set that someone donated. Its one of the really nice wooden ones that comes in the trundle, so all the boys are having a great time with it. Then, our Edmarc nurse came by and took some blood. His labs have been fine so far, so we're happy about that. Cameron was pretty sick with some kind of bug yesterday, but he's perking up today. Nana Dexter still is gravely ill, but Aunt Shelle and Aunt Linda made it back last night in time to say goodbye. I was really relieved about that. Please keep the family in your prayers. We still haven't gotten to the beach yet with everything going on, but hopefully we'll make it sometime soon (if it ever stops thunderstorming).
FROM THOMAS & FRIENDS
Every Cloud has a Silver Lining (Never Lose Hope)
(composed by Mike O'Donnell & Junior Cambell)
Britt Allcrot Inc.
Life is full of surprises, full of ups and downs
And so to have a silver lining, first there must be a cloud
Bill and Ben the twins work together all day long
They sometimes disagree how things are done
They get down in the dumps
If things they do don't work out just as planned
But if at first you don't succeed then understand
There's no sense in worrying if things start going wrong
Obstacles can all be overcome
But even Bill and Ben both agree that in the end
If you never lose hope, you're sure to cope and carry on
Every cloud is silver-lined, even when it rains
So don't get too downhearted, as things are bound to change
All you've gotta do is wear a smile and you will find
Your sun will shine
So if you've got a job to do, make sure you do it well
Arguing will get you nowhere fast
When Bill says "Push", and Ben says "Pull"
They always get it wrong
But never lose hope, you're sure to cope and carry on
Every cloud is silver-lined, even when it rains
So don't get too downhearted, as things are bound to change
All you've gotta do is wear a smile and you will find
Your sun will shine
Everybody makes mistakes it happens all the time
You should never lose sight of your goal
Just like Bill and Ben things will work out in the end
If you never lose hope, you're sure to cope and carry on
When you're feeling down it doesn't help to wear a frown
Never lose hope, you're sure to cope and you can carry on
Every cloud is silver-lined to help you on your way
As long as there's hope, it'll help you cope
You must never lose hope, it'll help you on the way
Tuesday, July 4, 2006 11:23 PM CDT
My magnetic attraction to hospitals continues... I spent most of the day at Bayside General visiting a very sick relative, Nana Dexter. Please keep her and her family in your prayers. The doctor's prognosis this morning was pretty grim. But we know who's really in control... They didn't expect her to live through the day, but she has. And she even woke up and talked a little bit. I'm praying that she can stay stable at least a little bit longer until her two very close daughters return from Europe tomorrow. --They were over taking a little vacation when the unexpected happened. I know the whole family would appreciate prayers.
Its sad how sometimes it seems only tragedy brings everyone together. I wish families could make and take more time to be together for happier events. But it was nice seeing some distant relatives today, who I hadn't seen in years and years. Now that I'm home again, we REALLY need to get over and see some of my even closer family members too. I hope all of you had a happy, family-filled holiday today!
Tuesday, July 4, 2006 0:23 AM CDT
I'm thankful tonight for family. And I'm also thankful for friends who act like family. One such friend I'm thankful for is Becky, who takes care of my kids for me when I can't, even when I'm far away. And that she invites us to all her summer cookouts (and I'm thankful for her crab dip too...lol). I'm thankful that Cameron and Carly have learned to swim like fish in her pool. And I'm thankful that they've made so many good friends there at Becky's who have helped distract them and who have gotten them through hard times without their mama this past year. I'm thankful Peanut also feels right at home there (even though he was horrified that they lit off fireworks tonight.) And I'm thankful that all of Becky's kids (both her biological ones and her "adopted" ones) made such a big deal about welcoming Carter back to her house. They surrounded him, and hugged him, and talked to him and catered to him all night. (Almost like he had a bunch of little nurses... hehehe) That really made him feel special.
One other thing I'm thankful for... Peanut's newest words... "I luh loo Ma-weee." (I love you, Mommy.) He said that to me spontaneously several times today...
What a great day.
"It is easy to take liberty for granted, when you have never had it taken from you." ~Dick Cheney
Sunday, July 2, 2006 10:11 PM CDT
We had a nice quiet (well as quiet as you can get with four kids) Sunday at home. Papa worked on the ferry today. Cameron helped Carter set up his blue train track this morning, and the three boys played with his motorized Thomas trains for a good while. We read lots of good books today too (Miae will be glad...lol). Took a walk in the stroller to the store and around the neighborhood this evening, ate chocolate ice cream cones on the porch.... normal family stuff. Have a little trip to the beach planned and a couple more cookouts to hit over the next few days. Probably won't go to anymore fireworks displays though. Peanut has gotten to the point where if he even sees them on TV he gets upset. Peanut and Carter are sharing a little head cold, but hopefully it will hit the road without making them or anyone else around here too miserable. That's about it... have a safe and fun holiday!
"You have to love a nation that celebrates its independence every July 4, not with a parade of guns, tanks, and soldiers who file by the White House in a show of strength and muscle, but with family picnics where kids throw Frisbees, the potato salad gets iffy, and the flies die from happiness. You may think you have overeaten, but it is patriotism." ~Erma Bombeck
Saturday, July 1, 2006 0:00 AM CDT
Sorry its taken a while to update. Have been busy, (but really happy) the past couple of days. Bobby came to pick me up from DC since the train was delayed yesterday and then we got stuck in traffic, so I didn't get home until late last night. Today I've been busy playing Pretty Pretty Princess, reading books, unpacking meds, unpacking boxes (Bobby didn't know where to put the stuff that was shipped home before...lol), unpacking bags, picking up Thomas trains over and over, changing diapers, making lunch, giving meds, giving baths, dressing the boys... that's all...hehehe. Then tonight, we all went to see fireworks at Ocean View Beach Park. --They changed the Ocean View Beach Festival to 4th of July weekend this year, so I didn't miss taking the kids afterall. I was happy about that. Carly and Cameron had fun riding the rides, but Peanut was scared to death of the fireworks... poor guy. Carter had fun playing footsies with his transplant buddy Sabrina, whom we met on the lawn at the festival. (She also received a living related sm. bowel transplant a few years ago at UIC.) She wasn't one bit afraid of the fireworks. She has gotten so big and healthy and smart. I had fun talking with her about her nurse friends and her Dora dolls. Tomorrow should be another busy day. I'll have more playing, cleaning up and unpacking to do, and then we're off to see Grandma and Grandpa Wells and the gang for a cookout. I hope everyone is having a happy, healthy, and safe holiday weekend!!!
"There is nothing wrong with America that cannot be cured by what is right with America." ~William J. Clinton
Tuesday, June 27, 2006 11:16 PM CDT
Twas the night before discharge and all through the floor, the patients were sleeping, and it was a bore. The boxes were packed and stuffed full for the post, so with just a few bags through the station we'll coast. I can't wait to get nestled tonight in my bed, where visions of kiddos will dance in my head. And Carter in his bed will fidget for the cover while the chilly vent blows and the sounds of pumps hover. Soon we'll leave this old room where I sit and get fatter, where I listen to gossip and medical chatter. Away to the east coast, we'll travel by train, not flying like a flash, too afraid of a plane. The moon on the roof of the slow moving coach, will glimmer through the night as we slowly approach. When what to our wandering eyes shall appear, but the state with the towns and the streets we hold dear. On tomorrow, on Wednesday, on Amtrak, on the station, we're movin' on soon to that sweet destination! To the arms of our family, for the hugs of them all, we'll dash away, dash away, dash away ya'll!
"A man travels the world over in search of what he needs and returns home to find it." George Moore
Sunday, June 25, 2006 9:02 PM CDT
Carter and I just got back from our second trip outside... When Valerie has been working, she's taken us out for a walk twice now. She works in the evening, so the temperature always cools down by the time she gets here. When we go outside, we see the concrete benches that have the letters "UIC" etched in them, and Carter always recognizes the letter "C" for Carter. Then we circle around the round cement planters, that hold huge red blossoms that are so pretty. --Carter doesn't like the smell of those ones though. Then we go downstairs to the large garden below the administration building that is the project of the horticulture department. They have medicinal plants growing down there (with a big warning sign not to eat them), and all sorts of fragrant, beautiful flowering plants with buzzing bees all around. I love the brilliant purple lavendar, and they have herbs growing down there like thyme, sage, oregano, and such. And in the center of the garden is a round bubbling fountain. Despite the bees, and the lack of a wheelchair ramp to get down there, I think the garden has been a wonderful place to visit. Then we go down the tree lined walkway that stretches out from the back of the hospital... the one I travelled down so, so many times with Carly to get to the El train. That walkway was burried with bright yellow leaves in the Fall. Then it was covered over several times by thick white snow during Winter, but lately just by little shallow grey puddles. There's a row of bushes near the edge of the walkway where Carter and I have seen a little bunny hopping about the two times we've visited there. And tonight we saw two more bunnies nearby at the edge of the parking lot. We turn the corner and head right beneath the tracks of the El train. And Carter makes us sit right there and wait and wait for the next train to come. We can watch the trains pass right over our heads us from that spot. And needless to say, that's been Carter's favorite part of our whole trip.
Today was spent playing a long game of hide-n-seek in the hall. (Carter made up for not walking much yesterday.) We had several visitors, just our nurse friends, but visitors just the same who stopped by to play with trains. And we found a website that has all the lyrics listed to our favorite Thomas songs. So we played our DVD of Thomas' greatest hits tonight and had a big ole'sing-along. Its been another very pleasant day.
Please send up a prayer tonight for our friend Samuel all the way in Scotland who really needs to get his call for a liver and small bowel soon.
"As I stand alone
walls on all sides
On the hardness and trials
I will stand tall
as tall as I might,
for all of my
humble little life.
Til the world tramples me,
and I am no more,
I will stand tall
as tall as I might.
Always reaching for the sun.
Even though all around
is brokenness and pain
I’ll lend my brief beauty
and stand tall
as tall as I might.”
Amanda Kiser
(that poem made me think of my Carterman)
Saturday, June 24, 2006 12:19 AM CDT
Carter and I have been having a lazy morning. He got pretty worn out from having another busy, fun-filled day yesterday. He played with Beth from St. Pat's church... She brought him a great new Thomas book. He hung out with Mindy from Kidpower... He had fun showing her his new Cranky the crane toy Grandma Candy bought. He REALLY got pooped out playing with Ms. April and her two PT students... He played hide-n-seek again, and walked around the unit --without the walker this time -yeah! Then he spent a long time reading and playing trains with Nurse Glen last night. Life is still good here.
Want to say congratulations to our transplant buddy Brandon in Tennessee. He celebrated his tenth transplant anniversary yesterday. Here's to another ten years! His mom formed the wonderful internet group Gifts From Heaven. Go to www.giftsfromheaven.info to check out our kiddos.
"Summer afternoon - Summer afternoon... the two most beautiful words in the English language." Henry James
Friday, June 23, 2006 10:33 AM CDT
Yesterday Carter played hide and seek with Nurse Robert. He travelled around the PICU in his walker. And he made a lovely picture of what I think is a train station and tracks with his OT, Megan. No fevers for two days now. I bought our train tickets for home yesterday. Looks like Wednesday will be our big day. Life is good here.
Thank you for your prayers... Our friend Hannah seems to be slowly getting a little better as of yesterday.
"Do not look forward to what might happen tomorrow; the same everlasting Father who cares for you today, will take care of you tomorrow and every day. Either He will shield you from suffering or He will give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginings." Francis De Sales
Wednesday, June 21, 2006 11:55 AM CDT
I had a wonderful time last night visiting with Malachi (the cute little flirt that he is), Rachel, Chris, Grandma Candy and Grandpa Dennis. They made a wonderful dinner and I went swimming and hottubbing in the back yard. You'd think with all my massages, yoga classes, relaxation therapy and such that I get in the hospital, and with trips like the one I took last night, that I was on vacation up here or something. But I'm really very thankful for all my friends who offer me fun ways to relax and relieve my stress. --I've been spoiled, but I think its done a lot to help me keep what little sanity I have left. I sure am gonna miss the Shercks and the Millers though, but I have a feeling I'll be seeing them again some time.
Carter had a great evening too last night from what I understand. Everyone here is so helpful when I need to take a little break. He had volunteers hanging out and playing with him, and visited his physical therapist while I was gone. When I called to check in on him last night, they said he had already fallen asleep by shift change (7:00). So, I was happy to hear he had fun and they wore him out. He got some new Thomas things from Grandma Candy that he's been playing with today. Rotten guy...I know, but he definately deserves the spoiling too, I think.
They're talking more and more about discharge. He's still having mini-fevers --I guess you'd call them. He gets up to 100.3 or so, but nothing higher. Hopefully, they'll just keep on dwindling down. They said we might get to go home next week. That's the tentative plan for now anyway.
If you're at the supermarket this week, pick up a copy of Woman's World. There's an article in there on one of Carter's girlfriends --Sabrina. She had her transplant up here almost two years ago now. Her mommy is a very special friend to me.
Also please pray for one of Carter's transplant friend's (from another hospital)Hannah. She's been going through some of the things Carter has, and she's been going through some even worse things too. She's pretty sick this week and could really use some prayers.
"Your friend is your needs answered. He is your field which you sow with love and reap with thanksgiving. And he is your board and your fireside. For you come to him with your hunger, and you seek him for peace." ~Kahlil Gibran
Monday, June 19, 2006 8:51 PM CDT
Guess what??? No fevers last night! Hopefully that's a sign of good things to come. We had a good day. Carter played a lot on the mat with his trains. We took a wheelchair ride downstairs to CT this morning to get another look at his belly --there's still a little fluid in there, but doesn't seem like there's any more big abscesses... so that was good. While we were down there, we stopped in the skywalk and watched cars drive by underneath us, and we looked outside at flowers and statues and stuff. That was nice. Maybe we can sway one of the nurses into taking us all the way outside one day soon. We also worked in our letter books today. Been trying to do that more, in hopes he'll be going to school this fall. April, our PT also came by, but by the time she got here, he was plum tuckered out and gave her a very hard time. Hopefully, we can get him up and walking again a little tomorrow.
I think tomorrow evening I'm going to try again and get a visit in with Grandma Candy. Chris and Rachel and Malachi will be here for an appointment in the AM, so it will be fun to get together again. Then I'll head down south with them for just the night. That will be fun too, I'm sure.
"Do what you can, with what you have, where you are."
Theodore Roosevelt
Sunday, June 18, 2006 10:57 PM CDT
Although it was spent in the hospital, today was very nice. We got a chance to talk to Papa and Pop Pop this morning and wish them happy father's day. Wish we could have spent it together, but hopefully next year. Carter had a chance to play with Nurse Robert today, before he headed off to the Madonna concert tonight. (I know I've mentioned it before, but Carter loves hanging out with his buddy Robert.) Carter also had a visit from Nina, Dr. Artiega's daughter. They enjoy reading books and playing together every once in a while. He really seems to be feeling better, despite still spiking temps. Who knows, maybe tonight he won't spike one. But if he does, he might be getting another CT scan done in the morning. We also had a visit from Mary, one of the volunteers from St. Pat's church. She is a very nice lady. She gave me a little escape from the hospital for a couple hours this evening, and made me a home-cooked meal --steak dinner --yummy! It was a really pretty evening, (especially for Chicago...lol)so we sat out on her balcony and ate. So now you know what I mean, by today being nice, even though we're still in the hospital. We were pretty spoiled today.
Well, with it being Father's Day and all, I feel obliged to write a little tribute to Carter's Papa. He really has been Mr. Mom, or Superdad, etc., this past year. He's been working so very hard lately, especially at home, and at work too. I hope he realizes how much I appreciate it. Can't wait to get home and help him out. Today when I called he was folding laundry and kissing Peanut's boo-boos. (Peanut has a thing now where you have to kiss each finger of the bumped hand ---front AND back.) --Bobby says the laundry folding and the kissing are jobs he can't wait for me to take over again. And I can't wait either. :-)
“A father is a fellow who has replaced the currency in his wallet with the snapshots of his kids.”
author unknown
Saturday, June 17, 2006 7:47 PM CDT
Carter is perking up again. He got a visit from his friend Ms. Geri today. She got Cameron a souvenir Sox cap for us to take home (very cool), and some other fun things for the kids. Ms. Geri is Nurse Maureen's cousin. She's been helping us out a whole lot lately, and we REALLY are thankful for her. Asha and Miae are making his bed, and Carter is sitting up on the mat rolling his trains over playdough right now. Its pretty quiet --the weekends are usually like that around here. The temps continue... but he's acting more normal again which is a good thing.
"People usually consider walking on water or in thin air a miracle. But I think the real miracle is not to walk either on water or in thin air, but to walk on earth. Every day we are engaged in a miracle which we don't even recognize: a blue sky, white clouds, green leaves, the black, curious eyes of a child -- our own two eyes. All is a miracle."
Thich Nhat Hanh
Friday, June 16, 2006 12:49 AM CDT
Carter has been sleepy and a little cranky. His energy level has gone back down a bit again, just because they've been doing some not-so-fun things to him these past few days. On Wednesday, they took him downstairs and put him to sleep, so they could drain infected fluid out of his belly. Then yesterday, they had to put him to sleep again, because they decided to switch out his central line. He still hasn't quite bounced back from all that yet, and despite all they've been doing, he STILL has been running fevers. They decided to start a new antibiotic today, maybe that will help. Last night he told the fevers to "go away, so we can go home." Hopefully they'll listen to him. Stubborn fevers. Despite a few struggles we're still having, though, he's almost ready for home. His TPN has been cycled back down to 18 hours a day. We've also been talking about stopping by Pittsburgh and letting the docs there get a look at Carter for a few days, on the way back to Virginia. We'll see. We look forward to visiting with a couple friends this weekend, and can't wait to see our buddy Malachi when he comes for his check up next week.
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
-Eleanor Roosevelt
Tuesday, June 13, 2006 11:31 PM CDT
Today was Carter's best day yet. He pretty much acted like a normal kid! He had Robert as his nurse, so those of you who know him will understand that that alone probably helped. He talked a whole lot more today. He watched a new Thomas episode on TV this morning. Then he played on Thomasthetankengine.com with Robert. His therapists came and he walked across the room with his walker!!! Then we took a wheelchair ride down the hall to see the rainbow and went to 5 East to see the fish. He's also been sitting up playing with his trains a lot. And tonight, he even got up and sat on the mat to play for a long while.
Needless to say, despite the continuing, persistant temps, he seems to be feeling better. He had his CT done yesterday, and it showed a fluid collection behind his JP drain, so they just went ahead and pulled it out. We think it was clogged, so hopefully the fluid will just drain out now on its own. If the temps still persist, they'll probably take him to IR and pull the fluid out down there. If the temps go away after that, he might be able to keep his line. We're not sure yet. It feels like we're getting closer to home though, so that is lifting our spirits up a lot.
"A rock pile ceases to be a rock pile the moment a single man contemplates it, bearing within him the image of a cathedral."
Antoine de Saint-Exupery
Saturday, June 10, 2006 11:31 PM CDT
It has been a nice, quiet day. Carter is still too quiet, except he's singing to his Thomas video right now. I'm thrilled to finally hear his little voice. He and I took a good nap today. Our friend Annette and her husband came by to visit this afternoon. Carter was happy, because he got a couple new Thomas toys. Tonight we're staying up late, hanging out with Mama Miae. Today, Asha brought some Indian food in for lunch. Carter thought it was pretty funny that Mommy was eating "the Indian chicken" for some reason. Asha had him grinning for a minute or two. It was really yummy food though. Too bad Carter couldn't try some too. He still has the low fevers, usually at night. One of his line cultures came back positive today. But we're still supposed to be going to get a CT scan done of his belly on Monday too, to rule out abscesses. Dr. Benedetti leaves for vacation Tuesday, so hopefully Carter and all his transplant buddies will behave next week!
I talked with the gang back home today. Carly and Cam get out of school this week. Bobby is working really hard, and is really exhausted. Apparently, the cab business is slowing down right now, with the weather being nice, I guess. He's working on the ferry too, but he might have to get a third job. It will be sooo nice to get home. It will make life a little easier and happier for everyone. Just have to nip these fevers in the bud. I know we're getting closer.
"There is no great achievement that is not the result of patient working and waiting."
J.G. Holland
Friday, June 9, 2006 5:14 PM CDT
We just had visitors knock at our door. It was Brande's mommy and daddy. Brande is Carter's new transplant buddy. She's living right across the hall from us now. She had kind of a rough week, because she got a little line infection, but she's stable again now, and I can see that her parents are really happy about that. Please keep her in your prayers.
Carter is still a little yellow, but as of yesterday, his bili had gone down a little bit, so that's good. Most of his pain has gone away now, so that's very good too. He had music therapy today and physical therapy today. His energy level is still VERY low, and he's still having low grade temps every now and again, but we're still trying hard to get him to perk up. If he'd at least start talking, I'd be more happy. On Monday, April (PT) is planning to get him up in the wheelchair. He got his ART line and his foley cathetar out today, so that was great. I think once he can get out of the bed and out of the room, it will make a world of difference. We just can't wait to get out of here. We've been getting pretty tired at times this week, and sometimes it makes us cranky once in a while, but we're still hanging in there pretty good. Have a good weekend.
"People count the faults of those who keep them waiting."
French Proverb
Wednesday, June 7, 2006 7:51 PM CDT
Carter is perking up little by little. He sat all the way up today, and is talking more --mostly only to me though. I was a little concerned yesterday when he had a low grade temp, but that seems to have gone away. My concern for today is his eyes. They're looking pretty yellow. That scares me because he hasn't had any liver issues in such a LONG time. The PICU attending isn't too worried. She says because his body has been bleeding and oozing and bruising a lot this past week or so from the surgery, that his body is just working extra hard to process all of that. And that can make the bili jump. (His bili is 5 today, up from 2.5 a few days ago.) Then, Dr. B came in and his first question was "What is his bili???" He said if his bili hasn't gone down by Monday they'll do a biopsy. Then he said that its just a matter of time before we start running into trouble. --I know that, but it stinks being reminded!!! I'd rather stay optimistically blissful like the attending doctor is...lol.
I forgot to update everyone praying that the little gal who was having insurance troubles finally got her liver/bowel transplant here last week, and seems to be doing well so far. Her mom went public with things and Medicaid seemed to change their mind really quick. Funny what a lot of media attention and a little of prayer can do!
"I am still determined to be cheerful and happy, in whatever situation I may be; for I have also learned from experience that the greater part of our happiness or misery depends upon our dispositions, and not upon our circumstances."
Martha Washington
Monday, June 5, 2006 5:41 PM CDT
Wanted to let everyone know that I made it make from Pittsburgh safe and sound. It was really a good all around experience going, and I'm glad I did go. Dr. Benedetti and I got to ask some of the other big docs about what they would do for Carter. They didn't really seem to have a whole lot of new ideas right off the top, but they said they'd think about it. And the docs from Pittsburgh and from Georgetown both said they'd be happy to take care of Carter in the future. I was able to also talk to Dr. Lang from Harvard. She's the lady who is able to get line access in kids who don't have it anymore. She said she's been teaching and will continue to teach the interventional radiologists at other centers how to do the technique, so that more docs will be able to do it now. So that sounds really promissing. One big thing I also got from the conference is how well Dr. Benedetti does his homework. Most of the things that were suggested to treat rejection, we've already done. I guess that can be a good or bad thing depending on how you look at it. But it gives me great peace of mind to know how good and on top of things, they've been here with him. Some of the statistics and graphs and outcomes they presented were also kind of scary. I came away from the conference feeling very fortunate that we even still have Carterman with us. He has really beaten the odds more than once. His docs have been mentioning how tough he is a lot lately. I'm very thankful for the time we've had and continue to have.
Don't have time for a qoute tonight. Ms. Bernice sat up another yoga class for the parents and I'm already late!!!!
Thursday, June 1, 2006 8:41 PM CDT
I ran away for a while. I'm in Pittsburgh. Yes, you read right--Pittsburgh. There is a huge conference here with transplant surgeons from all over the world. I'm hoping to get some good info here to help us make plans for the future. Our good buddies in Chicago helped me get out here (thank you!!! you know who you are!), and set it up so that Carter would be in good hands while I'm gone. He's got his special nurses looking out for him, and some volunteers coming to stay with him. I'll only be gone a few days, but I feel a little guilty for leaving him. Its almost a blessing that he's still on the vent because he doesn't know I'm gone. But at the same time, I'm hoping to get some ideas to help him in the long run, so I hope it will be worthwhile. I got to meet a couple of my internet buddies for the first time who are also here(after talking with them online for quite a while now). I also learned some interesting things already... like Pittsburgh doesn't give their kids lactobacillus anymore because its apparently unregulated and they've had children get infections from it... thought that was pretty eye opening. Will pass on any other good info I get.
Monday, May 29, 2006 10:18 PM CDT
Today was very hot for the Chicagoans, but it still feels good to me... more like what late Spring often feels like in Virginia. We didn't go to any cookouts this Memorial Day, but I still got to eat ribs in the cafeteria.
Carter is moving around more when he wakes up. Sometimes it scares me, because he swings his arms angrily around. But Mama Miae says its good that he's moving more. Today was interesting. His heart rate has been extremely low (probably from all the pain meds) but his blood pressure has been way too high (i guess from all the fluids). They're working on tweaking those things out, but he had some of the nurses a little nervous earlier today. He doesn't want to be touched at all, and is really better off when he's asleep. He's still in so much pain when he wakes up. The docs said the surgery was difficult because the icky bowel was sticking to everything in there, and his incision is very huge. Mama Miae says she can tell he's in more pain now than he has been with any of his other surgeries (...she's taken care of him after just about all of them I think). So that is kind of sad. But he is still a strong trooper. And knowing Carterman, he'll be better as the week goes on.
"God's time for further revelations of the heart might come later. Tomorrow was not our business it was His. Letting it rest with Him was the discipline of the day, and it was enough."
--Elisabeth Elliot
Sunday, May 28, 2006 10:32 PM CDT
It has been quiet and hot here today. I like it because it reminds me of home --the hot part, not the quiet part...lol. I just got off the phone with Chris and Rachel a while ago, and it sounds like everyone is getting adjusted to their home again just fine. That just makes my heart do a little dance inside.
Carter's day has been quiet. He's had a few little blood pressure issues, but it seems like they've gotten his hemoglobin under control. He's not bleeding nearly as much as he was yesterday. Thank God for that. He's still on the ventilator and still pretty heavily sedated, because his pain has been bad when he wakes up. But he looks very comfortable and peaceful right now.
"God's time for further revelations of the heart might come later. Tomorrow was not our business it was His. Letting it rest with Him was the discipline of the day, and it was enough."
--Elisabeth Elliot
Saturday, May 27, 2006 7:23 PM CDT
Although he has had some bleeding this afternoon, Carter remains very stable. He also has a really good nurse and PICU attending today, which always makes you feel good. He's on the ventilator for now, because he has required a lot of blood products and fluids today. But hopefully we can get him off within the next few days.
I was so wrapped up in Carter yesterday when I posted that I forgot to mention what a bitersweet day it was yesterday. --The sweet part was that our buddy Malachi got to go HOME!!!! I spoke with Grandma Candy. She said he's trying to get used to his surroundings again after being gone so long, but otherwise they're doing great!
We're planning on getting a visit from our transplant buddy Ivie this week too. (just a scheduled visit) So that will be nice.
I had a nice long conversation with Dr. Benedetti this morning regarding Carter and his future. We have a few ideas that we're tossing around (although it mainly involves him getting seen elsewhere). We're both very discouraged by our current circumstances. But neither one of us has given up hope for Carter yet. So that is very reassuring.
"Now faith is being sure of what we hope for, and certain of what we do not see."
Hebrews 11:1
Friday, May 26, 2006 4:41 PM CDT
We just had the scope done and my biggest fears were confirmed. Carter appears to be in irreversible rejection again. His platelets dropped from 90 (supposed to be above 150) to 35 in just a few hours today. They're worried about his other systems too, but so far he's still stable. They don't think they can do anything to save the bowel. --They've given him everything they think could help. I kind of knew this was coming because of his symptoms the past few days, but it still stinks to have it confirmed. They're planning on taking his bowel out in the morning.
"You can learn many things from children. How much patience you have, for instance."
Franklin P. Jones
Wednesday, May 24, 2006 10:50 PM CDT
Today was pretty tranquil. Carter is still sleeping quite a bit. The CT scan from yesterday didn't show anything significant. So no big changes or plans have been made. I got pretty concerned this evening because his bowel looks noticably different underneath the mesh. Its really large and distended. But the transplant team came by and said they're not too worried. They said it might be bigger because of all the fluid shifts Carter has been having. He's still having good ostomy and gtube output, so they're not worried about an obstruction or anything. Carter got to visit with Mrs. Jennifer for a while tonight. I know he enjoyed it. And Grandma Candy came for a visit today, so that was a nice surprise...
Malachi seems to be feeling much better today, so hopefully they'll get to head emoh by the end of the week.
Carter's next scope is sceduled for Friday. We're still in waiting and praying mode.
"The sea does not reward those who are too anxious, too greedy, or too impatient. To dig for treasures shows not only impatience and greed, but lack of faith. Patience, patience, patience, is what the sea teaches. Patience and faith. One should lie empty, open, choiceless as a beach - waiting for a gift from the sea."
-Anne Morrow Lindbergh
Wednesday, May 24, 2006 2:01 AM CDT
Today has been kind of long around here. We had our scope done this morning...again no change. No better, but still no worse, which is good. We had a CT scan done this evening to try and figure out where the pain is coming from. It still may be just the rejection, but I guess with the recent surgeries, they need to make sure. Results from that won't be back till tomorrow. We also had an ultrasound done a little while ago. We noticed tonight that one of Carter's arms is twice the size of the other. So they wanted to make sure no clots had formed anywhere that might cause this. They didn't find any, thank goodness. Circulation and fluid shifts have been an issue since he's been on the steroids. So the arm problems are probably part of that. It amy just take a little time for it to resolve.
Today has also been really long for Malachi's family. They were all set to go home tomorrow, but he spiked a temp tonight. Just as I had felt their excitement over the past week, I'm also now feeling their dissapointment. Hopefully this will only be a short postponement for them though.
Sorry if this isn't worded that great, I'm AWFULLY tired right now.
People are like stained-glass windows.
They sparkle and shine when the sun is out,
but when the darkness sets in,
their true beauty is revealed only if there is a light from within."
-Elizabeth Kubler-Ross
Monday, May 22, 2006 11:41 PM CDT
I tried to update yesterday, but the website was acting funny. The past couple days have been very quiet. Thats because Carter has gone from whiney to sleepy. They increased his pain meds the other night because he's been having more pain, so that probably explains the sleepiness. They thought his pain might be caused by a hematoma that formed at his splenectomy site. So they took him to the OR this morning to drain it. But once they got down there, they found that it was very small and only superficial. They said the only other probable cause of the pain is rejection. We didn't get our scope done today, because Dr. Benedetti figured Carter had had enough excitement with just the OR visit. So we'll probably get that done tomorrow. Carter is pretty comfortable right now. He's enjoying hanging out with Nurse Mia tonight (she's so awesome..we love her so).
Malachi has been a bright and happy spot in my day lately. He looks like a million bucks. He's gotten used to me now, and we've been having lots of fun playing peek a boo and he chased after me in a game of tag in the hallway today (his daddy helped him run). He really thought that was hillarious. Such a cutie that little dude is. You should check out his website and look at the new beautiful pictures of his fam. I'm happy for him going emoh, but I'm trying not to think about him leaving this week...lol.
Will try and post after the scope tomorrow. Right now Dr. Benedetti says we just need to wait and pray. I feel like we've already done a lot of that already..hehe. But we'll just have to keep at it, i guess.
"We could never learn to be brave and patient if there were only joy in the world."
Helen Keller
Saturday, May 20, 2006 11:21 PM CDT
Today was a much better day than yesterday. Carter still had his moments, but wasn't constantly screaming his head off which was nice. He got some new Thomas things tonight which made him happier than I've seen him in days.... we'll see how long the mood lasts...lol.
I went out with Chris and Rachel (Malachi's parents) for dinner tonight. I'm feeling their anticipation in leaving, and am excited for them. Looks like they may be heading home this week. I'm sure going to miss them. They've supported me in so many different ways in such a brief time. I also said goodbye to Grandma Candy today. That made me a little sad because I'm not sure when I'll see her again. She's such a sweet soul. Anyhoo, I'm hoping we'll be crossing paths again. And who can be sad for a family who gets to leave after being here for months on end? Its just kind of a drag when my transplant buddies come up here, we get close, and I'm still left here...lol. (same thing happened with Ivie's family.) But its been a blessing meeting them all, so it may sound like whining but its not. I've found it gets easier in time to find silver linings in the whole (multiple) transplant experience, but meeting interesting new friends definately ranks at the top.
"Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom."
Marcel Proust
Friday, May 19, 2006 10:36 PM CDT
The mood swings continue. Well, actually his mood today was mostly just bad. He screamed and cried a lot. Still thinking its the steroids, I guess. I don't now. He's not in a lot of pain, but his white blood cell count has been rising real high the past few days. They think with his immune system the way it is, he may not be able to spike a temp like a normal person, so they drew cultures just in case. He had his scope today too. The bowel looked pretty bad and I was pretty sick with worry until Dr. Benedetti swung by and said he thought that the sloughing off we saw might have been remnants from the top part of the bowel. I guess the biopsy results will let us know for sure, but we won't get back those until tomorrow. Nonetheless, Dr. Benedetti says he feels a lot more optimistic this time around, so I'm just trying to be optimistic too. I met a new friend named Gerri today. She's the cousin of one of the nurses and has helped me out with fundraising through her coworkers. We really need it right now, so I am really greatful for that.
"Our greatest glory is not in never falling, but in rising every time we fall."
-Confucius
Thursday, May 18, 2006 11:09 PM CDT
I asked the docs today if steroids could cause mood changes. They said "steroids can cause psychosis." Well I guess that explains things...lol. My little guy's mood has been swinging all over the place lately, changing in the blink of an eye, it seems. I guess you can't blame him. I'd probably be going nuts if I'd been cooped up in that bed so much too. He did manage to get some quiet playtime in with occupational therapy, but he shooed the music therapist out after just one song. ...Sigh, looks like we'll be on these steroids for a bit longer, so things may be interesting. Anyhoo, Carter has a very busy day tomorrow... more steroids, plasma pheresis, more thymo, IVIG, scope and biopsy. So I'll update more when we find out how the bowel looks... still praying for "enterocytes"!!!
Malachi seemed to have a really fun day... He had lots of visitors and was full of smiles. Hope he gets emoh soon. ;-D There's two kidney transplants that went on the past few days, so the unit is busy.
"The path to our destination is not always a straight one. We go down the wrong road, we get lost, we turn back. Maybe it doesn't matter which road we embark on. Maybe what matters is that we embark."
Barbara Hall
Wednesday, May 17, 2006 11:10 PM CDT
This morning Carter had a visit from Dr. Doofus --one of the clowns who reguarly visits up here. He likes to watch them bump into things and hurt themselves. I think he giggled for at least five minutes straight. They say laughter is the best medicine. So I sure was happy he got a good dose of it today. He wasn't as cranky as he was yesterday, so that was really nice too. Not much new went on today. He got more plasma pheresis, more thymoglobulin and more IVIG. He'll get another scope done on Friday. I've jumped on the American Idol bandwagon (it just happens when you're stuck in the hospital...sorry to say) and I was very sad tonight that Elliot was voted off... he's from Virginia, ya know. But, anyway, speaking of American Idol, Malachi's parents played me a very beautiful song that Carrie Underwood came out with. You should listen to it when you get the chance. I've included some lyrics below...very appropriate for our circumstances, i thought.
"Jesus take the wheel
Take it from my hands
Cause I can't do this on my own
I'm letting go
So give me one more chance
To save me from this road I'm on."
Carrie Underwood
Tuesday, May 16, 2006 10:12 PM CDT
We had our scope today. The doc said the bowel "didn't look any worse, maybe a little better." There is still no epithelium, but the bowel looks less inflamed and a little less fragile than it seemed before. Of course we cant do much without the epithelium (that's the part that absorbs) but maybe it will still come. It tried coming back a bit last time he rejected. It just, unfortunately, takes a while.
I found out the other little kid up here I was writing about just has to get some insurance things straightened out before they transplant...They aren't totally refusng, so that was good news too. Maybe they'll get their transplant next week, so please pray for them.
Malachi has been quite the social butterfly. He's able to take his walks down the hall now. He's such a cutie bug!!! I'm praying they get to go home, but I'm sure gonna miss 'em.
Well, Carter wants me to play trains with him before we go to sleep, so I'd better get going. I guess if your saying a prayer for Carter tonight, you can ask God for some enterocytes. When leaving the room today, Carter's doc gave him some advice. He said, "Grow some enterocytes." I know Carter can't do that without God's help, so I think that would be a good prayer.
hugs & thanks, Nichole & Carter
We are made to persist. That's how we find out who we are.
Tobias Wolff
Monday, May 15, 2006 9:01 PM CDT
Not too much new today. Carter started his day off with more plasma pheresis --he gets that every other day. He was also supposed to get a scope today, but I guess the scope guy took the day off. So I'm anxiously awaiting that tomorrow. Good news is Carter had a pretty good morning. He played with both his therapists today. He hasn't really been up to that lately, so that was really good. Kind of scary news s that his ostomy is still putting out a lot of bloody stuff, which makes me kind of worried. I know the docs are still doing all they can though. They made another change today. They decided the OKT3 just isn't working on Carter because his lymphocyte count is rising again. So they switched him back to thymoglobulin, which was lowering his lymphocyte count better. So that's where we're at tonight. Please say a little prayer tht maybe Carter's scope will look better tomorrow, and keep praying for our buddy Malachi that he gets to go home soon. He's doing pretty great. Also pray for another kiddo up here. They were supposed to get a liver/small bowel transplant today, but insurance is being a pain in the butt. I have to keep the faith that God can move mountains. That's what Grandma Candy told me today. :-D And I believe it.
Life is a long lesson in humility.
James M. Barrie
Sunday, May 14, 2006 9:35 PM CDT
Carter actually made it through a whole entire day without any big treatments or procedures. Sunday was actually a day of rest for him I guess. He's still pretty quiet, but I'd have to say he was more social today than he has been lately. He had a good day. We had a special visitor from Peoria today. Grandma Lynne, grandma to angel Dylan (www.caringbridge.org/il/dylan), came all the way up here to see us. We spent the day hanging out with Carter and we also went out to lunch. It really made my mother's day nice to have company like that. Some folks from the hospital also got together and made me a goodie bag with embroidery supplies and chocolate, and I got a sweet angel of hope from Malachi. The gifts really surprised me. And of course my midgets back home woke me up at the crack of dawn this morning to wish me "Happy Mother's Day!!!" --they forgot about the time difference, I guess, but that's okay. So I'd have to say with all that and with Carter having a peaceful day, it was a pretty awesome Mother's Day... Even if it was spent in "Club Med." Hope all you mammas reading this had an awesome day too! Happy Mother's Day!!!!
love, Nichole & Carter
"Heaven is at the feet of Mothers."
-Arabic Proverb
Saturday, May 13, 2006 9:27 PM CDT
Carter avoided extubation. Yay! He had some serious chest PT, which I know couldn't have felt very good with him just getting his spleen out, but it worked. He desatted again for a little while this morning, but it wasn't as bad as last night and a few good coughs resolved that. Today he's been doing well respiratory wise. He's really cranky though. He's extremely thirsty, because they've been keeping him dry. --They have to limit his fluids because the med he's on tends to make the lungs wet. So they've been letting him have a few ice chips today. But when he eats them his tummy hurts. I can't wait for him to just go to sleep for a while just so he can be less cranky and miserable. Hope all you moms have a terrific Mother's Day tomorrow!!!!
It is true that you may occasionally overhear a mother say
"Children must have their naps,
It's mother who knows best."
When what she really means by that
Is that she needs a rest.
-Donna Evleth
Friday, May 12, 2006 10:52 PM CDT
I was just getting ready to update Carter's webpage, when Dr. Howie called me back to Carter's room. Apparently, Carter is in respiratory distress. This is a common reaction to the OKT3, which they started him on tonight. (Its the very strong antirejection drug I was talking about yesterday). He didn't have this reaction to the drug last time he was here, which Dr. Benedetti says is encouraging. He's hopeful and thinks Carter is reacting to the drug the way he's supposed to this time. I hope so, I guess too, but just hope it doesn't stress him out too much. They say the first night is the worst. They may be intubating him shortly. The nonrebreather mask is making him nuts right now.
Half of the modern drugs could well be thrown out of the window, except that the birds might eat them.
Dr. Martin Henry Fischer
Thursday, May 11, 2006 9:10 PM CDT
Thank you Uncle Andrew for the webpage quote yesterday. Today has been pretty okay. Carter had his spleen taken out this morning, and that went fine. He's been in a considerable amount of pain though. The pain medicine works, but just doesn't last as long as I'd like. He's also starting to look like Mr. Sumo wrestler from all the steroids again. But he's still really stable right now and we're really thankful for that. Tomorrow we're having another scope done to see how the bowel looks and they might be sarting OKT3 (nasty rejection drug) again. Carter is once again being a trooper. Thanks for continuing prayers.
"You can't have a light without a dark to stick it in."
Arlo Guthrie
Wednesday, May 10, 2006 9:51 PM CDT
Carter had another scope this morning, and things didn't look much better, and maybe a tad worse. But I haven't lost hope, because he just got his humungous doses of steroids just last night. So please pray that Friday's scope will look better. I feel so greatful to be at this center. I feel like the docs are doing EVERYTHING in their power to get us through this. One other thing that they have decided to also do is to take out Carter's spleen tomorrow. So please also pray he makes it through that okay in the morning. Dr. Benedetti says he's had other patients who have had multiple cases of rejection where taking the spleen out helped. I know I'm asking for a lot of prayers here, but if you could also send up a prayer or two for our buddy Malachi. It seems like he's on the road to recovery, but he's had so many setbacks and I know his parents are tired. I'm just praying he's on his way home to Muncie now.
"Trust in the Lord with all your heart, And lean not on your own understanding; In all your ways acknowledge Him, And He shall direct your paths" (Proverbs 3:5,6)
Tuesday, May 9, 2006 11:07 PM CDT
I want to thank all of you who are praying for us. I know we really need them right now, and I already have a sense of peace about the situation that I know comes from God. But we feel so blessed to know that so many people are supporting us with prayer.
Not too much new today. Carter isn't feeling very well. He's been sleeping a whole lot, and hasn't been very sociable and friendly like he usually is with his visitors. Please don't take it personally. I'm afraid things will be getting worse before they get better. They're starting huge doses of four different steroids tonight, that we know will make him feel pretty lousy. I just hope they don't make him too sick. He's already on dopamine and insulin again. I think we'll also be getting another scope tomorrow, so we'll see. I'm very thankful, because I know we're also blessed with a VERY CONCERNED team up here, who is doing everything they can for our boy, and we're surrounded by great friends too, which helps a lot.
"For where two or three come together in my name, there am I with them." Matthew 18:20
Monday, May 8, 2006 10:43 PM CDT
Last night we had an awful night. It felt like de ja vu. We're apparently back to treating rejection again. I say apparently because last night he was in sooo much pain, just like he was last time we were here. Today the bowel looked really bad on his scope. Not quite as bad as it was last time he was in rejection, but pretty bad. Of course the biopsy results won't be back til tomorrow, but all the docs are so convinced its rejection that they're treating him for it. We're back to the massive steroids/antirejection drugs again. We're also going to use IVIG and plasma pheresis. Since the bowel doesn't look quite as bad as last time yet, we're praying, praying, praying that this can be treated through.
"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."
Dale Carnagie
Sunday, May 7, 2006 10:17 PM CDT
We had a pretty good weekend. We were fever free as of Friday afternoon. Getting the old lines out seemed to be working.... so we thought. Tonight, he spiked another fever and started throwing up again. I'm a little concerned because the cultures from his line never grew anything and he's on two pretty strong antibiotics, so I'm not sure why he's spiking temps. He's also complaining a lot of belly pain now. Please keep us in your prayers. He's having another scope done tomorrow. Like I said before, we're trying to avoid the "R" word. Also keep praying for our buddy Malachi and our buddy Stephen. They've been having a rough week.
Dreams come true. Without that possibility, nature would not incite us to have them.
John Updike
Friday, May 5, 2006 9:35 PM CDT
Carter is having his first bump in the road. He's been having high temps. They're not ruling out rejection until cultures come back. They are giving him extra steroids and have him scheduled for a scope in the morning, but if I had to bet, I'd guess that his plasma pheresis line got infected. it had started looking pretty yucky before they took it out today. They also guided in over a wire another new CVL for him and started him on antibiotics. He already seems to be perking up a little, so I think they're on the right track. Sure hope so. Rejection is something we're aiming to avoid.
The time is now, the place is here. Stay in the present. You can do nothing to change the past, and the future will never come exactly as you plan or hope for.
Dan Millman
Thursday, May 4, 2006 0:51 AM CDT
Well, I just wrote a long journalentry but lost it, so I'll try again. Carter is still groovy. He had his scope today, and the bowel looked great. He's also tollerating his tube feedings okay so far. He got up out of bed twice today to play, so we're pretty happy.
Things are so calm this admission, its almost scary. I've had lots of time up here to work on my needlepoint. I've sold several little projects so far to raise money for Carter's transplant fund. If any of you want to order one, let me know. I've been having fun making them. Most of them have organ donation sayings, but I can do special requests too. I'm making the little frames magnetic, so you can stick em on the fridge.
Carter's nurses taught Carter a new joke (I'm sure all you healthcare workers can appreciate:
Knock Knock.
Who's there?
HIPPA
HIPPA who?
I can't tell you.
Tuesday, May 2, 2006 1:11 PM CDT
Carter is still doing great. He got up out of bed yesterday and sat and played with his therapists on the bench. He's been playing with his trains a lot, and having fun being silly with his nurses. They plan on starting up tube feedings today!!! Hopefully that will go good, and he'll be able to eat table foods again soon. I know it may be a very slow process with his feedings. He has had so much trouble with vomitting in the past, but I'm hoping he'll fool us and do great. He's continues to do amazingly well so far. Please send up some prayers for our transplant buddies Malachi and Ivie. Malachi is feeling better, but he's having tests done to rule out why he's been so sick, and Ivie's tummy bug has her doing some weird things. She's really feeling yucky. I'm also praying for my nephew Elijah. Hopefully he'll be born soon, so his mommy can stop having false alarms, and stop feeling miserable.
Sunday, April 30, 2006 7:55 PM CDT
We're having another little transplant reunion. Ivie is back with a little bug. Malachi is still pretty sick on the vent, but he's getting better. Carter is still doing really, really well. He's been having a little back pain over the past couple of days, but it seems better today. His bleeding seems to have subsided too. He's quite the playful and happy guy, especially after having a transplant 6 days ago. We're enjoying the company of our other transplant families.
Yesterday Carter said, "Mommy, when I grow up I want to be a nurse like Robert, so I can give Thomas toys to everyone, and I want to be a doctor like Dr. Benedetti, so I can fix people's bellies and give them pain medicine, and I want to be a builder like Bob."
Friday, April 28, 2006 0:20 AM CDT
Tonight I'm taking a little break at the transplant apartment with Malachi's parents. Nurse Mia and Grandma Candy are back at the hospital looking after the boys, so I know they are in really great hands. Today was another really good day for Carter. He was able to get rid of two IV's, so he'll be able to play much better now. And his first scope today looked super. The bowel was all nice and pink. Dr. Benedetti came by and said he's not too concerned about the bleeding either. Its probably just a little old blood still oozing out from his anastamosis (where they connected the intestines together). I wish i could say things were going better for our little buddy Malachi. He's had a rough week and a pretty rotten day. Tonight, Carter closed his eyes and held Grandma Candy's hand and said a prayer, so hopefully God heard it, and things will get better. Is that sweet or what? If you're reading this and could keep praying for all of us up here, that would be great too.
Wednesday, April 26, 2006 10:15 PM CDT
Carter is still doing well. We're a little concerned because he still has some blood coming out of his gtube and ostomy, and his hemoglobin dropped a bit today. He's been getting lots of blood products. We also understand that his donor (after further testing) doesn't appear to be quite a perfect match for him. But despite those things, Carter acts like he never had a transplant, yet alone had one two days ago. He's still doing REALLY awesome so far. He was extubated off the vent today. He's been really playful. We played with trains and watched Thomas and Theodore Tugboat today. I swear he'd get up and walk if he could. He got another visit from Ms. Jennifer tonight, which really made him happy. Today has been another great day. Malachi has been feeling a lit under the weather the past 24 hours or so. Hopefully his belly will feel better, and he'll be back to being a happy camper tomorrow. Tomorrow Carter has his first scope. Your continued prayers are appreciated!!!
Monday, April 24, 2006 9:31 PM CDT
....So far, so good! Carter has had a remarkable day. They said yesterday that he was already ready to come off the vent, and today he's still doing amazingly well. They're keeping him on the vent for another day or two at least while they continue to manage his fluid fluxuations. He's got everybody up here really happy so far. Even though he has the tube down his throat, he's been shaking his head "yes" and "no" all day to let us know what he wants. He was moving and grooving around like he was dancing to cartoon music at one point today. And he was putting his feet in my face, so we could play our stinky feet game. So today was awesome. I've still got Malachi's family up here to hang out with so that's been wonderful. And Ms. Jennifer stopped by after work for a visit. Its been good catching up with our home away from home the past few days. So far things have been wonderful. Please keep praying for the donor family that gave carter his special gift, and we thank you so much for all the continued prayers! ...Hopefully this third time's the charm.
Sunday, April 23, 2006 4:39 PM CDT
What a crazy 24 hours its been. Carter just got discharged from the hospital yesterday after having a fever a few days ago, but his cultures never grew anything, so they think it was just a little viral bug. We made it home and got all settled in last night, and then we got a call saying we had to go BACK to the hospital to prepare for transport to Chicago. Well, thats not exactly how it happened. First the transplant coordinator called from Chicago and said she might have organs available. Then she called back 15 minutes later (what seemed like hours) and said there was another center ahead of us, so she wasn't sure. Then we got our third call 20 minutes later, and they said we needed to go. That was enough to make us crazy!!! I can't imagine what you guys have been through who have had numerous false alarms. We were totally unprepared... dirty laundry, not much packed, etc... but we made it up here by 3:15 AM. Everything went SOOOOO smoothly thanks to our home hospital. Thank you CHKD!!!! I've been zoned out on my sleepy meds all day, which helped me survive the flight last night. (I hate flying.) So thankfully I've been able to sleep most of the day. I was told the organs got here at about 11 this morning. Its now 4:15 and they said he'll be back up on the floor in about an hour. So that was fast. They said the organ came from South Carolina (ironiic because thats a lot closer to Virginia than Chicago is). The donor was only 9 kilos ...a little one. Please pray for their family. Im very thankful to them. What a gift!!!!!
Wednesday, April 19, 2006 9:59 PM CDT
Sorry my journal entries are few and far between, and the ones that I do post are pretty boring. But in the big scheme of things, boring journal entries are really a good thing. It means we're taking a much needed break from all the excitement. Carter is doing well this week. His biggest concerns are Peanut (his little brother) stealing his trains. His back is a little sore. I think it has to do with weak muscles. But he started PT this week and did better than I thought he would. They say he's at a two year old level, but that's a lot better than he was doing just a few months ago, so we'll take what we can get.
April is National Organ Donation Awareness Month... Don't forget to share your feelings on organ donation with your family.
"To remember me"
The day will come when my body will lie upon a white sheet neatly tucked under four corners of a mattress located in a hospital busily occupied with the living and the dying. At a certain moment a doctor will determine that my brain has ceased to function and that, for all intents and purposes, my life has ended. When that happens, do not attempt to instill artificial life into my body by the use of a machine. And don’t call this my deathbed. Let it be called the bed of life, and let my body be taken from it to help others lead fuller lives.
Give my sight to the man who has never seen a sunrise, a baby’s face or love in the eyes of a woman.
Give my heart to a person whose own heart has caused nothing but endless days of pain.
Give my blood to the teenager who was pulled from the wreckage of his car, so that he might live to see his grandchildren play.
Give my kidneys to one who depends on a machine to exist from week to week.
Take my bones, every muscle, every fiber and nerve in my body and find a way to make a crippled child walk.
Explore every corner of my brain. Take my cells, if necessary, and let them grow so that, someday a speechless boy will shout at the crack of a bat and a deaf girl will hear the sound of rain against her window.
Burn what is left of me and scatter the ashes to the winds to help the flowers grow.
If you must bury something, let it be my faults, my weaknesses and all prejudice against my fellow man.
Give my sins to the devil.
Give my soul to God.
If, by chance, you wish to remember me, do it with a kind deed or word to someone who needs you.
If you do all I have asked, I will live forever.
Robert N. Test
Friday, April 14, 2006 11:56 PM CDT
I'm writing this entry in the middle of a really bad thunderstorm, which is kind of scary and probably not too smart. We've had a couple of April showers this week, which is good. Its been too dry.
We also had two emergency room visits this week. I'm really starting to wonder why I have such a strange magnetic attraction to hospitals. I just can't get away from them for very long.
The first visit was for Carter. His stitches came out that were holding his central line down. The doctors here chatted with Chicago and decided that since he has a cuffed, tunnelled line that has already been in for several months, that he probably didn't need the stitches anyway. So he got to get out of the ER without ever getting poked. Yay!
Carly, on the other hand, was not so lucky. Yes, ER visit #2 was for her, not Carter. For some reason she decided to try to cut an orange with a steak knife on the edge of a counter that she can barely reach. Our kitchen looked like a crime scene with all the blood. But thank God, her cut was only on one finger and pretty small. Deep, but small. So, instead of Carter, she got the stitches instead. Anyone who knows how passionate Carly can be, will realize that holding her down for stitches is a very scary prospect. But fortunately, I still have a few friends in the Child Life Department...lol. Liz C., my former coworker and the Specialist who helped take care of Carter during his hellish admission last summer, is now working in the ER. Thank God for that too! She is sooo awesome. Carly's night (and mine!) would have been horrible without her distraction and kind explanations and hand to hold. The kids at CHKD are very lucky to have her.
Despite the hospital visits, its been a nice week. We had a surprise visit from Aunt Katie and "Uncle" Josh earlier in the week. They came down from Floyd for a couple days. My new nephew Elijah, should be arriving soon now! Katie looks great. Then, yesterday, Grandma and Pop Pop came down too. They were stuck in traffic a lot these past few days. And with the ER visit, well, we didn't get nearly as much time in together as we would have liked. But we'll just have to get together again really soon.
Not much else new to report. Have just been trying to survive Spring Break this week with all four of them at home all day at once. They really started getting annoyed with each other. But hey, I'm happy. At least for now, we're together and home!
Hope you all have a blessed Easter weekend. Be safe on the roadways.
"Those who dream by day are cognizant of many things which escape those who dream only by night."
Edgar Allan Poe
Sunday, April 9, 2006 0:54 AM CDT
On Monday, my mommy and papa celebrated a big day. It was their ten-year wedding anniversary. They used to talk about how they were going to renew their vows and have a big wedding on their tenth anniversary. Maybe they'll do that on anniversary 15 instead. Then, last year, they said they were going to take a big trip instead. But I think Mommy is kind of worn out from travelling right now. Plus, I kind of have a lot of tubes and medicine and stuff right now, and I think Mommy is a little nervous about getting me a babysitter. So instead, we dropped Carly and Cameron off at school, and dropped Peanut off at Becky's house Monday morning, and the three of us went out to the new Ruby Tuesday restaurant, not too far from the house. It was fun because I got to drink some strawberry lemonade and nibbled on a little bit of Mommy's sour cream. Then, Cameron got to eat Papa's leftovers afterwards when we got home. He was pretty happy. Mommy said it was still a special day that she'll always remember.
Not too much else new went on this week. Mommy says she likes the fact that the laundromat she goes to is on the beach. Carly and Cameron had fun running from the waves there the other day. Today, we went to Edmarc's Easter party. I was pretty afraid of the Easter Bunny at first. He was so big. But then Mommy showed me that he was not mean and he was soft, so it was okay. Mommy and Cam and Carly played games and ate lunch and I had some grape juice, and then we all had a great big Easter egg hunt. Cameron and Carly helped me get sooooo many eggs, and they got a bunch too. Then Peanut had fun opening the eggs and eating lots of chocolate when we got home. Tomorrow we're all supposed to go see Clifford the Red Dog, so this is a really fun weekend for us.
I miss my Chicago friends a lot, and I've been telling Mommy that I want to get my belly fixed so I can eat again. But Mommy is happy that I'm feeling so, so good right now, and we sure are glad to be home. I'm also excited cuz my Pop Pop and Grandma are coming to town this week. Talk to you soon!
Love, Carter
"Enjoy the little things, for one day you may look back and realize they were the big things."
Robert Brault
Sunday, April 2, 2006 10:35 PM CDT
No news is good news... We've just been hanging out this week. Bobby has been working hard, and we've just been hanging out at home. Its definately Springtime here. The temps have been in the 60's and 70's. Its been nice keeping the windows open all the time. Cameron and I went to see Ice Age last night, and Carly had a sleepover with her best buddy Kiley. Carter has been watching videos and playing with trains... hehe, not much new there. And Peanut has been spending lots of time playing and looking out the window. He climbs up and lays on the top of the couch and loves to watch everyone going by.
Carter and I took a trip to the hospital on Thursday for a checkup. It went really well. We were lucky to run into so many of our friends, caregivers, coworkers, etc,. Dr. Tsou thought Carter looked great. It was nice catching up with some of our long lost buddies.
"Enjoy the little things, for one day you may look back and realize they were the big things."
Robert Brault
Monday, March 27, 2006 9:55 PM CST
Hello all,
Sorry I haven't updated. But yep, we did get home safely. Carter and Carly had fun on the train ride, and we've just been hanging out at home this weekend. Its nice seeing green grass and blooming dogwood blossoms outside. The weather is much milder here (which I already knew). We've been having fun catching up with each other. After two days of playing, Carly and Cameron are starting to go at it again. What can ya do. Cam is having fun this week. His class is going on daily field trips to Huntersville pool for swimming lessons. Carly has a TB test tomorrow. Then we'll probably be able to get her back into school on Wednesday. She's really excited. Carter has just been having fun hanging out. I'm having trouble setting up his physical therapy. There seems to be a shortage of therapists around here. But I'm still convinced that his siblings make great therapists. He tries hard to keep up with them. He's been pushing his meds and pumps all through the house in his Little Tykes shopping cart. Someone gave me that idea a few years ago and it sure has worked out great ...especially now that he is hooked up to one med or another just about all day long. And last but not least, little Peanut is doing fine too. He's happy to have Carly and Carter back. He's still not talking much, but maybe a little more. He now calls me "Papa" all the time (--same thing he calls his dad.)
"By the time a man realizes that maybe his father was right, he usually has a son who thinks he's wrong."
Charles Wadsworth
Thursday, March 23, 2006 1:33 AM CST
I got our train tickets this morning. It looks like this may be the real deal! (Having a kid like mine, you're always skeptical until the very last minute) But we're getting really excited! Its been a BIG chore packing. Its amazing how much stuff we've accumulated during this admission. Can't say we don't feel loved. THANK YOU KID POWER for helping me get it all home. Don't know what we'd have done without you! I think this train trip will be a memorable one. It will be lots of fun having Carly with us to share it this time. Will make sure to get picks with my new camera (and thanks to the secret pal who gave it to us). To all you Chicagoans... thank you so much for being so wonderfully hospitable and caring to us these past months. We'll miss you, but you know we'll be back...lol. To all you Virginians... see you on Friday!!!
"Mid pleasures and palaces though we may roam,
Be it ever so humble, there's no place like home."
John Howard Payne
Monday, March 20, 2006 11:32 PM CST
We've been having so much fun these past few days. We're busy getting our good-byes in with everyone (even though we may be back sometime soon). This weekend we hung out with Malachi's parents --Carly can't get enough of them, and I feel like she's in their hair quite a bit, but they're nothing but nice about it. The one wonderful silver lining in all our transplant experiences will always be meeting and befriending wonderful people who we probably never would have spoken to otherwise. We've also spent time these past few days with our volunteer friend, Mrs. Jennifer, to whom we've become very attached. Her hubby Roy finally met Carter yesterday. (Carter has stolen Mrs. Jennifer away from Roy a lot these past few months. So Roy, thanks for letting us borrow her.) And today was birthday party day! They had the conference room all decked out in Thomas the Tank Engine decor. It was really fun. Several of the other patients who were healthy enough to get out and eat, were able to come have Thomas cake with us. I received a wonderful surprise gift too this weekend. Someone must have heard me say that I wished I had a digital camera, because one mysteriously appeared in my room yesterday. Can you believe it! So now, I will be able to put more current pictures on Carter's webpage more often, at least when we're home. I'm really excited about that. I'm also trying to finish up my two craft projects that I've been toiling on for months. (May not get those done till I get back.) Working on getting transportation arrangements ironed out to get home --looks like maybe Thursday, so far. Also still working on getting everything packed. AND we're spending the night with the Duncans tonight (Ivie's parents). Ivie is just here for a doctors visit tomorrow, and they managed to get into the room right next door to us at the Ronald McDonald House, so we're having fun hanging out because we're not sure when we'll see them again. Ivie is doing great and looks like a million bucks!
---Whew! If you can't tell, this is a busy week for us, but also very happy and exciting!!! Hope to see all you Virginians soon.
"Friendship make prosperity more shining and lessens adversity by dividing and sharing it."
Cicero
Saturday, March 18, 2006 10:06 AM CST
Last night we ate dinner with Malachi's parents in the family waiting room. Grandma Candy made us homemade turkey noodles, mashed potatoes, cookies, and Carly's favorite --rice krispie treats with Lucky Charms inside. So much for my diet, but it was a really great dinner. Rachel and Chris (Malachi's parents) are such nice people. They face everything with such strength and grace. I know that strength comes from their faith. And I'm happy to report that Malachi is doing really well this week. Carter came to dinner too. Last night was the first time, I heard him complain about being not being able to eat. He wasn't really upset. But when I offered the usual (popsicles, lollypops, jello, etc.) he did whimper a bit more than usual. ....sooo very sad. But overall, he's still a happy little energy ball lately.
Not much new to report really. Plan to start doing some serious packing this weekend, and to finish up the birthday plans. Carter is having a little party here in the conference room Monday afternoon. The other day, the discharge planner said she was aiming for Wednesday or Thursday of this week to get us home. I'm so excited that it hurts!
"God's gifts put man's best dreams to shame."
Elizabeth Barrett Browning
Tuesday, March 14, 2006 10:47 PM CST
You know there's a light at the end of the tunnel when the discharge coordinator FINALLY comes to your room. Yay! We've been waiting to see her pretty face in our room for 6 months now. (We've really been here 8 months if you're not counting the ten meazily days he got to spend at home puking in September.) We've set another new longest admission record. Not that we like setting those....
But anyway...on to happier things. The new plan is that we'll finish out Carter's antibiotics, and then give him a few days to stay fever free without them. (his nose was running a little tonight, so I'm a bit paranoid). But, if he passes the test, we may get to head home sometime next week, after we celebrate his bday, of course.
I visited Dr. Benedetti's office today. Funny thing, in all the trips and all the time I've spent here, today was the first time I've actually gone across the street to his office. We've always done most of our socializing on the 5th floor until today. He has pictures up in the office of the transplant kids. Its really sweet. I talked with him and the financial coordinator. They're going to get me a pager to take home and help set up a flight for when we get our call, and it looks like insurance is letting us stay with our center, which is a relief.
Carter has thrown his walker to the side, and was even running down the hall at one point today. He's definately back in action. Everyone is sooo happy to see him the way he was before the transplant. He has such a personality. All the time he's spent around grown ups I guess. Today he was giving advice to one of his pregnant nurses on how to breathe through pain. Hmmm...I guess he'd know. Not sure quite how they all got on the subject, but he's quite a hoot.
"He not busy being born is busy dying."
Bob Dylan
Sunday, March 12, 2006 9:23 PM CST
We're back to wet and gloomy outside again already. But our spirits are still bright. Carter had lots of fun laughing and giggling with Carly today. He was getting down the hall so well with his walker. Carly motivates him so much better than myself or the therapists. His sibs have always been his best therapists. They're so funny sometimes. We headed out from the hospital early this evening. Our good friend Jennifer took us birthday shopping at Target. Only one more week till he hits the big five! He doesn't need anything though (besides good health I guess). In fact, its getting a little more difficult to find stuff the boy doesn't already have, but I'm sure they'll come out with new stuff just as soon as he does have almost everything. I must admit that collecting Thomas trains is really fun though. It will be nice when the other two boys can join in and play with them altogether. They enjoyed that a lot at Christmastime. I had to pick up Carly the latest Tinkerbell ensemble with one of her Christmas gift cards. She's fluttering around the Ronald McDonald House in it tonight. I figured she deserved a treat for letting me drag her back and forth everyday.
"The reason grandparents and grandchildren get along so well is that they have a common enemy."
Sam Levenson
Saturday, March 11, 2006 11:11 PM CST
Today was another pleasant day. We were visited at the hospital by Jackie, the intern who worked in the Child Life dept. here during the Fall. Carter and Carly were very happy to see her and they all played for a while. She's the type of person who just bubbles over with energy. She'll be great working with kids, and she'd be so great working in a child life department somewhere. Even though she's gone back to Iowa now, Carter still asks about her from time to time, so it was really nice he got to visit with her again.
The weather was amazingly bright (Chicago always seems gray) and unseasonably warm today. We didn't really even need the sweaters we were wearing. It was absolutely beautiful. Carly and I took a walk down Taylor Street (the street by the hospital). We stopped in at a little sandwich shop. The wallpaper and some of the pictures on the wall reminded me so much of Virginia. The place itself even reminded me of a little ice cream shop I once visited at Virginia Tech. Carly said it reminded her of home too. Guess we're getting a little homesick, and maybe it was the warmer weather reminding us of home, but it was just wonderful. We may have to stop in there again if we have time. Hopefully it will continue getting warmer. That would make things a lot better for toting Carter around when he gets out.
“When you're safe at home you wish you were having an adventure; when you're having an adventure you wish you were safe at home”
Thornton Wilder
Saturday, March 11, 2006 0:06 AM CST
Well I finally met up with Dr. Benedetti today, and he also agrees with me that Carter is no longer PICU material. We put together a VERY tentative plan, but we're hoping that things can be worked out where Carter can spend a few weeks waiting for transplant at the Ronald McDonald House. Hopefully an organ will come available during that time. If we don't get a call by April, however, we may be headed back to VA, because Dr. Benedetti will be travelling out of the country next month. We'll see early next week how things start panning out. I know, this is Carter we're dealing with and everything is always only very tentative...lol.
Whatever happens, I have this wonderfully peaceful feeling that everything is going to work out for the best, (whatever the best may be). Its been a very happy, tranquil week for us, and I know that's keeping me positive. I'm feeling really blessed and thankful for these sweet, happy moments that Carter and Carly and I have been sharing --The eye of the storm perhaps??? Don't know. But nonetheless, I feel God in the mix.
"We thought we would teach our children about the world but ended up teaching the
world about our children." Jayna Sattler, Author.
Wednesday, March 8, 2006 9:07 PM CST
Not much new to report. I talked a little with the PICU doc today. He feels that Carter won't really be infection free and transplant ready until he finishes his 10 days of amikassin (i know that's spelled wrong) and then remains fever free for a few days afterward. I don't know what they'll do with us after that if it takes a while for an organ to come in. He really isn't PICU material anymore. They've been nice enough to keep us around though, and just give him to the charge nurse on each shift since he's pretty low maintenance. Hopefully I'll know more after I talk with Dr. Benedetti. I caught a brief glimpse of him hobbling around on crutches yesterday. I don't know what he did, but I hope he's still able to work. --Really selfish, I know, but he's such an important and busy guy. We depend on him around here! Carter has had fun playing with his wooden trains this week and reading LOTS of Thomas books. He's still taking a few steps with support, but still doesn't like it that much. Hopefully we'll get him on the push bike tomorrow.
"Believe that life is worth living, and your belief will help create that fact." William James
Monday, March 6, 2006 10:00 PM CST
Carter is still doin' great. They took another ct scan of his abdomen on Friday, and the abscess appears to be completely gone, and his fevers are also gone so that is great! In the PICU doctor's opinion, he's about ready to go home.... But there's are some hitches.
Dr. Benedetti has received two offers for a cadaveric organ for Carter in just the past three weeks that he's had to turn down. So if another good offer comes pretty soon, we may be here for a bit longer... I know a lot of very good people have given me advice about getting a second opinion, putting him into hospice care, etc., etc., but I don't feel good about doing either of those things right now. We've gotten very attached to our transplant center, and plan to atay loyal for the long haul. All of the other small bowel transplant centers also seem to have their complicated kids who just don't do so well. As you know, Carterman is one complicated kiddo, so I don't see how going elsewhere would really be that advantageous to us right now. I also feel in my heart that the docs here have all made the right decisions along the way so far. Its obvious at this point that Carter will need another transplant. He has absolutely no small bowel, which is very scary to think about, but he has a very strong body and spirit, so Bobby and I feel like we should push forward one last time with transplant instead of having any regrets in the future. Facing liver failure or an overwhelming sepsis, or a line access crisis in the future , and not having given it one last try, I think would leave us with regrets. So if all goes our way, we want Dr. Benedetti to keep taking care of Carter.
... So anyhoo, sorry for being long winded, just wanted to let everyone to know that tonight, that's where we're at. So our adventures in Chicago continue for now. It will be interesting to see what the next few weeks bring. Please, please pray they bring really good things......
FROM "OH THE PLACES YOU'LL GO" by DR. SEUSS
"You can get so confused
that you'll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed I fear, toward a most useless place.
The Waiting Place...
...for people just waiting.
Waiting for a train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or No
or waiting for their hair to grow.
Everyone is just waiting.
Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting perhaps, for their uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.
NO!
That's not for you!
Somehow you'll escape
all that waiting and staying.
You'll find the bright places
where Boom Bands are playing.
With banner flip-flapping,
once more you'll ride high!
Ready for anything under the sky.
Ready because you're that kind of guy!"
Friday, March 3, 2006 8:46 PM CST
Sorry for my lack of updates. Carter's week has been pretty easy going. They took him to interventional radiology on Tuesday afternoon and they were able to get his drain in without a hitch. The abscess hasn't put out too much icky stuff. I think they got most of it out while he was down there, so that was good. He had some continuing fevers earlier in the week, but he hasn't had one for 24 hours now, which is also very good. Carter had a test run this week that predicts a person's chances of going into rejection. Its called a PRA test (funny that it sounds like "pray" when you sound the letters out). Strangely enough, it showed that Carter has a zero percent chance of going into rejection if he were to be transplanted. (So what happened the past two times I can't tell ya.) Dr. Benedetti also came in this week and said he had an offer for a cadaveric organ for Carter this week. It about blew me away to even think about it. Obviously he refused it because of the infection and everything. Dr. Benedetti has never done a cadaveric bowel transplant before. He's done other cadaveric ones, but not bowel. I have every confidence that he could do it very well, but I don't know if my heart and soul are ready for it right now. I'm sure Carter could handle it. Amazingly, he almost acts like he never had a transplant. His spirits are great (back to normal) and he's getting around everywhere in the wheelchair, and is scooching around the floor and has even started taking baby steps ...he does better with the walker.
Oh, I just don't know.
Anyway, I have other good news. Our transplant buddy down the hall, Malachi, was extubated today!!! If anybody is a miracle baby, its that little guy! (I've added his link below.) He's been through so much in just the past month. Please help keep praying for him. He's finally doing well. May it continue!!!
And please also pray for a small bowel transplant family who is staying here at the Ronald McDonald House. Their little boy had his transplant done at Childrens Memorial and was doing well, but has gotten deathly sick this week. I'm really worried about them. Seems like no matter which center you choose for small bowel transplant surgery, there are some kids who do super well and some who just have whopping complications. Just the nature of the beast I guess.
Happy birthday August and Kara! (Ivie's big sis and mommy)
And thank you so much Liz from Edmarc for coming to see us and bring us goodies while you were in Chicago this week! Carter has had a ball with his gifts!
"There are only two ways to live your life. One is as though nothing is a miracle... the other as though everything is." Albert Einstein
Monday, February 27, 2006 10:52 PM CST
The abscess has been confirmed. Carter will go back down to radiology again tomorrow for more testing to see if they think the abscess can be drained. Sigh... If it ain't one thing it's another lately. But at least the PICU docs are happy. They finally know where the temps have been coming from, and have a source of infection to treat and fix. The temps continue, but he still feels pretty good. He started the day off kind of lazy and slow. Pretty much laying around and playing with trains, and who knew a little boy could be so fascinated by rainbow colored beads? He had them EVERYWHERE in his bed today. This evening he perked up a bit, and was up for longer in the wheelchair. We actually had a lovely dinner date in the PICU conference room. Carly and I dined on delicious leftovers, and Carter was served jello and ice water (but didn't eat either one.) It was fun pretty though.
HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO CAMERON! (10 YEARS OLD, WOW!) HAPPY BIRTHDAY TO YOU!!!!
Sunday, February 26, 2006 8:37 PM CST
Not much new going on. Waiting for tomorrow's scan to try and figure out where the continuing fevers are coming from. We discovered a big fish tank on the other wing of the fifth floor thanks to one of the nurses. So we enjoyed that for a while today. We also made marraccas out of beads and plastic cups. Thought I'd share a conversation that some of the nurses were laughing about the other day. This happened a few weeks back when Carter was still on all the pain meds.
Nurse: "What's wrong Carter what do you need?"
Carter: (mumbling and whining) "I want mawfeen."
Nurse: "Oh, I'm sorry Carter, Maureen isn't working today sweetie." (Maureen is one of Carter's favorite nurses).
Carter: "Not MAWREENNN!!! MAWFEEEEEENN!!!!!"
---morphine, that is...lol. Fortunately, they figured it out pretty quickly.
Friday, February 24, 2006 9:03 PM CST
Dr. Benedetti reviewed the CT scan results and thinks that Carter might not have abscesses. The radiologists think otherwise. Meanwhile, he's still spiking temps which have to be coming from SOMEWHERE .... Soooo, on Monday he's going to get a gadolinium scan and possibly a bone scan to help everyone see if the areas in question are abscesses or not. (The radiologists also think that if the areas are abscesses, they're not going to be able to treat them by just putting drains in because the fluid in those areas looks very thick and won't drain well. So they may have to be taken care of surgically... that's if they are indeed abscesses!...lol... I'll worry about that when I need to.) So afraid we're still hanging out and won't know much more till Monday. He was a little more cranky today, and had less energy. I think he may be a little dehydrated. But we all have days like that I guess. He did have fun playing with his new Thomas coal loader set. He got a special visit from some old resident buddies. We're happy to find out they'll be back up on the fifth floor next week. Carter loves playing with them.
"...don't make it bad. Take a sad song and make it better." The Beatles
Thursday, February 23, 2006 10:57 PM CST
Well, we finally found out the source of our infections. Carter has two abscesses that showed up on yesterday's CT scan. So I guess they will have to go in and drain them somehow. The resident said she thought they might place drains in his tummy, so they can drain out. One abscess is near his kidney and the other is in his abdomen. So I guess our trip home is being delayed a little. I didn't really get a chance to talk to the docs much today, because they were REALLY busy with our transplant buddy down the hall. Please keep praying for Malachi and his family. Dr. Benedetti has been a real busy guy this week. He was all over the news tonight too for performing a rare kidney transplant. It involved two couples, where each wife was able to donate a kidney to the other's husband. They said it was extremely rare to find a match in the same hospital like that. God works in mysterious ways. Pretty cool stuff.
I found this quote hanging on the wall at the Ronald McDonald House:
"When we come to the edge of the light we know, and are about to step off into the darkness of the unknown, of this we can be sure ... either God will provide something solid to stand on or ... we will be taught to fly."
Wednesday, February 22, 2006 9:30 PM CST
Ivie went home with her Mommy and Dad and brother and sister today. Yay for her, but we'll miss em'. We've had so much fun this week. Hopefully they can take a break and stay home for a while longer this time. Speaking of "home," they've started mentioning the "h" word to us too. Everyone here agrees that we need to go home and take a break for a while. But Carter must have gotten a case of going home jitters, because he's starting to act up a little. He still feels really great and has been up and playing and doing well. But he's having these mystery fevers that just won't stay away. Even though he's been on tons of antibiotics, antifungals and antivirals, he seems to spike a temp. every few days lately. But they've been drawing cultures from his line for weeks now, and nothing is growing. Today, they decided to do a CT scan to make sure there's no infection brewing anywhere else. I'm afraid they won't be able to get a really good look at his belly though, because they can't give him oral contrast. Well hopefully the IV contrast will show something. Will let you know. Hopefully they can figure it all out and get us out of here soon.
Sunday, February 19, 2006 11:17 PM CST
Well, Carter and Ivie are playing copycat. She didn't get to go home yesterday, because she started spiking temps. Carter decided to follow suit and also spiked another one yesterday, but none so far today. Knock on wood. Besides that, he's still doing great. We're practicing standing up and have been spending a lot of time playing with trains and going for walks in the wheelchair. Carly and I are having lots of fun hanging out with the Duncans (Ivie's fam) this weekend. We went out to eat (not much else to do in this frigid weather). Her kids also got to ride the subway for the first time. Carly cried because she wanted to stay in the car. --I think she's a little over taking the subway...lol. Today, we got in a fender bender on the expressway. Not hard to do with the way they drive in this city. So we're having lots of memorable adventures. Please pray for our transplant buddy Malachi as he has surgery tomorrow.
Saturday, February 18, 2006 0:51 AM CST
Carter is doing great. His fevers have gone away and he's ready for action. He got up several times today, and has been cruising down the PICU halls in a little kid-sized wheelchair they found for him. He went to the playroom today and wanted to get up and walk, but the little legs are still too wobbly. We've been practicing standing up though. He really doesn't like it too much. I guess it feels scary. Carly and him are having lots of fun together. We've been going down to Ivie's room too for lots of visits, but we won't be able to after tomorrow cuz she's goin' home. Sigh. We'll miss them, but hope they can stay away longer this time.
Wednesday, February 15, 2006 10:33 PM CST
Carter had an exceptional day. He got out of bed and left the room for the first time in two months (with the help of a nurse who picked him up)!!!!! He took a wagon ride all over the place and really pooped me out. It was really great. His fevers are finally going down. He only spiked to 100 today. He's still not growing anything in his line. He did have some yeast grow out of his gastric secretions, and had a yeasty? weird rash on his chest, so maybe that has been the problem. Who knows. Anyway, things are still going well. Our friend Ivie is back visiting and her Mama Kara is hanging out with me at the RMH this week, so Carly and I have company. Our transplant buddy Chrystal is also back this week from Texas, but fortunately she's been able to spend a lot of time at home with her Mama lately. Our transplant buddy Malachi still needs prayers, so please keep them coming! Seems our little transplant family up here is growing lately.
Saturday, February 11, 2006 10:34 PM CST
Carter's fevers continue for no apparent reason (blood cultures are still all negative,) but he's not letting a wimpy 102 temp keep him down... not after all he's been through!! ..lol... Despite the fevers, his spirits are still REALLY good. He enjoyed having Nurse Robert to hang out with today. We played with his new "Gordon Takes a Tumble" train set and watched the DVD (over and over). We also played with the quarry playset and numerous trains and watched lots of Thomas. He's moving around in bed pretty well now. They removed his arterial line in his arm and his foley catheter today, so hopefully that will enable him to get out of bed some more soon. Carly and I took a break tonight and went and saw Curious George. It was really cute. Malachi (our transplant buddy down the hall) did better today too, after a bumpy night last night. So all seems well tonight in this frigid, snowy, windy city.
Friday, February 10, 2006 5:59 PM CST
Carter had a really good day. He's back in business it seems. He told me today that he wanted "to get out of THIS bed, that he wanted to go for a walk, and that he wanted to go HOME!" The PT and OT people tried to get him up, but after being in bed for two months, he's not ready again yet. We'll just keep trying. Boy, am I ready to go home too. This week has been quite emotional for me. One of our internet transplant buddies flew away to heaven this week. She had waited so long for her organ, and like Carter, had done well for a really long time, but she also had complications and lost her transplanted bowel. Please pray for her family tonight. Also please keep praying for our new little friend Malachi. He recieved part of his mommy's intestines today, after just getting a piece of her liver on Wednesday. Sounds like things are going okay, but we still need to keep praying.
Wednesday, February 8, 2006 10:31 PM CST
Carter got extubated today. Yay! He isn't saying much yet, because I think his throat hurts a bit. Was nice to hear him talk a little though and not have to struggle with that icky machine and tube. Praying he'll stay off of it. He was a bit junky tonight and didn't have real good sats, but hopefully if he starts coughing more he'll be fine. Doesn't like to cough too much since it hurts his belly. He also starting running a 102 temp. tonight. Could be the line again, who knows. I swear the guy can't catch a break. I'm so happy he's off the vent, but will be even happier when he feels better and perks up again. He's off the F & M and now on morphine again. But maybe he can get out of bed soon. Today was a quiet day. He just wanted me to lay in bed with him and watch Thomas and Bob the Builder. Tomorrow, Dr. Benedetti wants to come by and have a chat about things, so maybe we'll be able to make more plans.
Please keep our new transplant pal Malachi in your prayers. His mommy gave part of her liver to him today, and it looks like they may have to do an intestinal transplant on Friday (they weren't expecting it so soon). I know they could use some big prayers.
Monday, February 6, 2006 9:57 PM CST
Carter is doing well all considered. His kidneys seem to have kicked in again since they took him off the toxic doses of Prograf. Running low grade temps today, but hopefully its nothing. Still working on fluid balances. His breathing is also getting better. Hopefully he'll get off the vent soon. He was more alert and awake today. You could just tell by the look in his eyes just how "over it" he is. His expression tells me he's very disgusted to have that stupid tube down his throat. I'll be happy to hear his squeaky little voice again. Hopefully in a day or two.
Friday, February 3, 2006 10:20 PM CST
Once upon a time in the land of Carter Wells... The resident who had Carter for January was talking about what a storybook the month of January was for us. Her end-of-the-month notes were very long....
Well, looks like February's resident isn't going to get a break either. The saga continues, with today being a very tragic chapter. I feel nauseated writing this. Sometimes its hard to journal for everyone, because I hate being the bearer of bad news. I was awakened this morning by the PICU attending, telling me that they needed to go in and emergently take the graft out (his transplanted intestines). This week's increase in steroids and prograf were just too much for the little guy to take. He's been so, so swollen and his kidneys have been working so hard, along with his lungs. His pleural effusion got worse, and he started getting fluid in his lungs. Then his kidneys started shutting down and he wasn't making urine. His platelets were also plumetting, even after several transfusions. They decided to take the bowel out before he got so sick, that they feared they couldn't save him. But good news is, tonight he's back in his bed and he's stable. He's on the vent, and has fluid oozing out from everywhere, but he's okay. Thank the Lord. So many thanks to all of you who prayed for us today! And many apologies to my family who is reading this bad news for the first time on the internet. I had a very hard time reaching many of you today by phone.
Many people are asking me what the next plan is. Hopefully he'll just keep on recovering, and we'll get to go home for a while. Some have suggested with all we've been through, that maybe we should start thinking about hospice. Others are saying we should go back to Pittsburgh. One thing I think everyone is in agreement on, is that Carter's body needs a break. So hopefully he'll get better and we'll get to go home soon for a while and regroup. I'm exhausted and going to bed now. Its been a crazy 24 hours.
Thursday, February 2, 2006 4:01 PM CST
Happy Groundhog Day everyone! So glad to read our friend Alycia in Maryland is improving bit by bit after really having a scary weekend. Also thinking and praying for our friend Samuel in Scotland. Looks like he'll need a transplant soon.
Our week has been pretty dissapointing too. Carter really seemed to be on the road to recovery and had a great day on Monday, but late Monday night started feeling really bad again. He didn't have a really high temp (around 100ish), and blood cultures haven't grown anything. So they went in for a scope yesterday and things look worse again. The bowel isn't 100% gone like it was last time, which is good, i guess. But its probably about 50% gone again. --It had been 95% of the way recovered, so to take steps back is a little dissapointing. But what worries me more is that Carter has been having a tough time dealing with all the steroids lately --has been needing insulin, has had high blood pressures and is very swollen from them. They had been tapering them down, wanting to get him off, but now they having to give him whopping doses again, to treat the new rejection. He's so puffy. They're having a hard time with his fluid balances, and now he has pleural effusion on the right side of his lung --where a little fluid has accumulated. I'm PRAYING they won't have to tap it and drain it. (ouch!) He also started asking for morphine again today after being off for a whole week...
So anyhoo, three steps forward, two steps back, I guess. I know it could be worse and hopefully it won't get any worse. We have another scope tomorrow. So if you can, please keep us in your prayers.
Friday, January 27, 2006 9:50 PM CST
Carter had a pretty good week. They confirmed through biopsy that his gut is coming around. They still aren't seeing any villi yet, but they don't think its far off. They even started feeding him. They're giving him 10 ccs an hour of formula through his jtube, but with Carter's history of diarrhea when he's on tube feeds, Dr. Benedetti has also started him on solids already. Unfortunately he's not very interested in eating yet. I bought him some chips (one of his favorites) and the poor guy is barely strong enough to reach into the bag and grab one... in time, I guess. He's really been more thirsty than anything. His blood pressures were still acting up a bit, though his pain is totally under control, it seems. Another little setback... he spiked a temp this morning. Probably another line infection I guess... Just waiting to see. Hopefully it will be short-lived.
Carly had off of school today. She's been playing having fun. Yesterday, she went on a play date with one of her little ballerina buddies after school. She also wrote a very cute book. I can't post the pictures, which are adorable, but the text is pretty darned cute too:
"CARTER FELT WELL"
by Carly Wells
Once upon a time, we were at the hospital after school and me and Carter had so much fun together.
And then, when we left, he was crying so hard. We wished so hard we could stay there, that we gave him a card.
We gave it to him and he was so proud. And he hung it on his wall where all the other cards are.
The nurses say, "Awwh, that is so cute of you to give him a card."
And then, Carter feeled very, very well, and I felt great.
The End
Sunday, January 22, 2006 9:28 PM CST
The blue stuff is sticking!!! There's a blue dye that the GI doctors use when they do scopes on Carter's bowel. It only adheres to the epithelium, or the layer of the intestines that absorbs nutrients. Well when Carter went into rejection, his entire epithelial layer sloughed off, and they've kept saying that its slowly coming back. Well Friday when they did his scope, the blue stuff stuck, which means there's those important cells in there....good news! The villi (the little finger-like guys that actually do the absorbing) haven't made their way back yet. Right now we just have mounds of epithilial stuff. But hopefully we'll start seeing those villi soon.
I'm the one who took a turn for the worse this week. I caught some icky bug somewhere and its taking me everything I have just to get through the day. I'm very thrilled that our friends Bill and Melissa decided to come up and hang out this weekend. We've had fun, but unfortunately, Melissa is feeling pretty cruddy too. We did make it down to Navy Pier and Carly made a "Build a Bear". Well, actually a pink poodle. She had a ball.
It's been a sort of transplant reunion up here with, Bill & Melissa (parents of a transplant buddy), Zach (another transplant buddy, just up here getting tonsils out), Ivie transplant bud up here getting her gtube fixed, and Isiah (the guy transplanted after Carter) was up last week. Well, I guess I probably just violated a bunch of HIPPA laws just now. But anyway, its been nice having so much company this weekend. Unfortunately haven't spent as much time at the hospital as usual though, because I didn't want to breathe on anyone.
Thursday, January 19, 2006 9:29 PM CST
Sorry for my lack of updates... Just not a whole lot new to report. Carly started ballet and tap this week and is WAY excited!!! (They have an afterschool program at her school.) --She's wearing her dance clothes around the house playing while I type this. She's been having lots of tea parties with Carter this week with the Disney princess tea set that she got for Christmas. And Carter has been enjoying the latest addition to his video library, "Percy Saves The Day." --When he's awake that is. The methadone and morphine have him sleeping A LOT. He's still having pain, but seems to be controlled a little better since they've increased his methadone. Tomorrow is a scope day and those usually increase his pain a lot though, so we shall see. His biopsy results from Monday showed some more enterocytes (intestinal cells) are growing. Very slow progress, but very good news. Still having blood pressure issues too... on three different meds for it, but its under control for the most part. That's about it. Will try to update more after the scope tomorrow.
Saturday, January 14, 2006 10:06 PM CST
Yesterday's biopsy didn't show a whole lot more healing, but it didn't show any more damage either, so that is good. I guess he'll have another one done soon. They gave him some more Influximab today too to try and keep any rejection from coming back. He's still having blood pressure/kidney issues and they keep having to increase his blood pressure meds. (The steroids and antirejection meds are taking a toll on the kidneys.) His kidney function was pretty bad yesterday but better today --typical of him lately --scaring me to death, followed by a sigh of relief, but I'm very thankful for those sighs of relief! He still complains a lot of pain, but maybe a little less today since they've started trying to transition him to methadone. He acts like such a little adult sometimes. "I'm having pain. Can I have my pain medicine please," he says in his tired little squeaky voice. So sad, but so cute. He did perk up quite a bit I thought today when I brought Carly in to play with him. He said, "Can I keep Carly?" Not really sure what he meant, but I think its a good sign...lol. Having Carly here may just be a really good thing for him. They played on the Leap Frog, shared play dough and watched movies together. I guess their closeness in age helps make them more compatible. (So different from the constant cat and dog fights Carly has when she plays with Cameron.) Speaking of which, Bobby called tonight and said the boys made it home safe and sound. Am missing them already. No more Peanut to chase behind on the steps and try to keep from falling off of high furniture. He gives the cutest kisses now. I'm really going to miss those!
Thursday, January 12, 2006 5:18 PM CST
Not much has been going on since I posted last time. Carter is still in a lot of pain. They started him on a new pain med yesterday to see if it helps control things better. His blood pressure is also an ongoing issue now, so they're treating him for that too. He finished his course of OKT3 (antirejection drug) on Sunday, so tomorrow's biopsy will hopefully have lots more new intestinal cell growth. I sure hope so.
Bobby, Cameron and Christian are heading back home this Saturday. (Carly is going to stay and hang out with me.) I'm really pretty bummed, but maybe things will start to improve and we can be reuinited before too long. ...sigh... I'm hoping for that too.
Friday, January 6, 2006 9:13 PM CST
I got some good news today. According to Carter's latest biopsy results from yesterday, some more enterocytes (intestinal cells) appear to have regenerated. There were none on his previous biopsy and they said that the whole lining of his bowel was gone. So finding more is really good. He's not out of the woods. His blood ressures have gotten high, and he's still having terrible pain. But please just keep him in your prayers. They seem to be working!!!
Tuesday, January 3, 2006 11:49 PM CST
I tried to post this yesterday, but it didn't go through for some reason:
Well I guess the Cdiff diagnosis was just too simple. The biopsy results from yesterday came back very bad. The intestinal cells that are supposed to be there aren't even there anymore. They think his gut is damaged beyond repair. They came in this morning and told me they wanted to take the graft out. I asked them to try OKT3 first. He looks so awful though, I'm scared about him getting a nasty drug like that. Dr. Benedetti seems pretty pessimistic to me. He said if we lose the graft, he wants to send us back to Pittsburgh. The surgeon in Pittsburgh said he would first suggest trying OKT3 too. So the docs here made a compromise with me... if he gets any sicker or there's no improvement by Thursday, the graft is coming out, but they'll go ahead and try the OKT3. I'm going to camp out at the hospital for the duration. Will try and ask a nice nurse to get me online while I'm there.
Praying for our cyber buddies Jeremy and Samuel.
However, today was more hopeful.... Dr. Benedetti talked more at length with the surgeon from Pittsburgh. He said that he's had kids with severely damaged bowels that were able to make a comeback with the OKT3 drug. So hopefully this will be a miracle drug for Carter too. So far he's been tolerating the drug okay. So once again, we're praying and waiting.
Sunday, January 1, 2006 3:33 PM CST
Seems like they're coming up with something new to call it everyday..... Today they're thinking the cause of Carter's woes may be Cdiff instead of rejection. I'm feeling pretty relieved though, because Cdiff goes away easier and is much simpler to treat than rejection. So that was actually good news. Weird because usually with Cdiff they get really bad diarrhea and Carter didn't, and Carter has been on flagyl, so he shouldn't have gotten Cdiff to begin with. But I'm being optimistic and still hoping they're right. They did another scope this morning, and things still look bad, but maybe a bit better than Friday's scope. He's still in quite a bit of pain, asking for morphine again. He's also breaking out in weird rashes. He's very puffy from all the steroids which also are making him irritable. But at least he seems to be getting some rest today. Geez, seems like the adventures never end around here. But maybe things weren't as bad as we thought .... I hope!!!
Saturday, December 31, 2005 6:58 PM CST
Okay, false alarm as far as the CMV goes. Turns out, he did have a positive result for CMV from the 25th, but then the one from the 27th came back negative and all the others have been negative. They're still monitoring him for CMV and treating him with Cytogam, but they don't think that's what his real issue is. They're leaning more towards rejection now. His bowel looks very different I can tell just by looking at it through the mesh. Its very red and distended, and he has bloody, mucousy stuff coming out of his ostomy bag. Sorry for the gross details. They're giving him plasma pherisis again. Do any of the other centers do that for rejection?? They also are giving him whomping amounts of solumedrol and are trying to give him Influximab treatments, but he's having an allergic reaction to it, it seems. He's having another scope & biopsy in the AM. I sure hope this goes away quickly. Thanks for your thoughts.
Friday, December 30, 2005 3:33 PM CST
Carter came back positive for CMV in his blood last night. The doctors seem very, very concerned because when they went in for his scope today, there were obvious changes in the bowel just by looking at it. The biopsies will tell them more. They don't know yet until they get the biopsy results back if its rejection, or CMV entercollitis, or if the CMV has sent him into rejection. They are also very perplexed because he's been repetitively negative for CMV until now, and his bowel looked fine during the last scope and biopsy last week. It seems to have come on suddenly? But,nonetheless, they seem very worried. Hopefully, they'll be able to treat through this. Once again we need prayers!!!
Thursday, December 29, 2005 2:05 PM CST
Three steps forward, two steps back... Carter is vomitting, so they have him NPO again today. They started refeeding his colon again (some of you KD nurses remember those good old days...lol) But that hasn't been really effective yet either, because what they're putting in isn't going through. So we're still hangin out waiting for progress. The kiddos are out of school on break. We were able to go downtown for dinner the other night (got a giftcard for Christmas) so that was really nice. Today, we're just hanging out here at the RMH playing video games and with their new toys. Papa (Bobby) is playing with Carter at the hospital this morning.
Wednesday, December 28, 2005 3:52 PM CST
Carter is able to start eating now! He's also on full feeds through his jtube. He's not really feeling that hungry though. He keeps having fevers every once in a while. He did grow an enterococcus out from one of the ports in his femoral line. So they managed to get another IJ line in. I think that will be much better for him. That femoral line was right beneath his ostomy bag, so that was just a disaster waiting to happen. I'm so glad that were able to get the other line in. The interventional radiology department seems pretty skillfull here. They've done his past several line placements.
Bobby is recuperating very well too now. But the thought of hubby and the kiddos having to go home soon is making my stomach turn. I guess we'll all enjoy their winter break from school together, and then we'll start making plans in a few weeks. I know I've been blessed to have them here for as long as I have. My original plan was for us all (Carter included) to go home together in January. But there have been some delays this go around. I guess thats okay as long as they can get everything working great again. That will be wonderful.
Friday, December 23, 2005 2:26 PM CST
Not too much new to report since my last entry. Carter is still having fevers, but they're not as high or as frequent as they were before. No one is really sure exactly why he was so sick. He did test positive for a virus (BK virus?), but the viral levels were pretty low. They said they should have been much higher and that his kidneys would have sustained more damage if that was the type of virus that was making him so sick. His test showing the reaction to the rabbit antigen (that I posted about earlier) also came back positive, but it was also a low positive. Those levels also weren't as high as the doctors expected, so I don't know that they're really sure what was going on. But good news is that since he's spiking less, he's feeling better for longer periods, so hopefully we'll be able to enjoy Christmas. They haven't let him up to walk yet or anything because his belly is still open. But he's able to sit up and play with Thomas and Friends at his little table that goes over his bed. Its definately beginning to look and feel a lot like Christmas. Thank you everyone who has helped with prayers and gifts. You have really made our Christmas special.
Monday, December 19, 2005 8:53 PM CST
Hanging out here at the Ronald McDonald House tonight. Bobby and I switched today since he had an appointment to get his staples out. He's spending the night with Carterman. Both guys are doing better. I know Bobby is glad to get them out. Now he can really start to recover. Carter isn't shaking constantly like he was last week, which is good. He has started resting better, and is definately communicating more (it was very strange having him silent for several days). I'm so relieved. However, unfortunately, his temperatures continue. He spiked up to 105 today. So I think the plasma pheresis has helped some, but I just don't know how much. All of his cultures are still negative. Although I wish his fevers would go away, we've made some great progress over the last couple of days in the gut department. He's had a lot less vomitting and has had a lot of output through his ostomy which is an awesome Christmas present. Very funny that I would want poop for Christmas. But am very glad we have it... May the progress continue.
Tonight the kids made Christmas cookies and were learning to hoola hoop. Cameron had a field trip with his Spanish class today, and Cam and Carly have Christmas assemblies planned for Thursday. Its definately beginning to look a lot like Christmas around here. We've received several big boxes from back home, and are anxiously waiting to open them. I let the kids know that Santa is sending their things in the mail this year, because he has so many families at the Ronald McDonald House who need gifts from him. It will take him so much time here, so it was just easier for him to mail our gifts this year. =-D
Hope everyone is getting all their baking, shopping and celebrating done with little stress, and that everyone is having a joyful holiday season.
Hugs and prayers from the frozen Wellses in icy Chicago!!!
Friday, December 16, 2005 12:51 AM CST
Sorry for my lack of updates. Carter has been keeping me VERY busy this week. He continues to suffer from chills and high fevers. His bacterial and viral cultures have all remained negative. He's been treated with antifungals, antibiotics and antivirals just in case, but they're thinking at this point that he may have serum sickness from thymoglobulin. Thymoglobulin apparently has rabbit antigens attached to it, and they think during transplant #1 (three years ago), his body developed antibodies to it. So now that he's been exposed to it again, the antibodies in his body are trying to attack the rabbit stuff in the thymoglobulin. Sorry for my lack of medical terminology in describing this. But this is the best way I can explain it. Anyway, the boy has been sicker than I've seen him in a long, long time this week. He has chills and is so irritable and thirsty all the time that he can hardly sleep. They say that could be from the serum sickness, the fevers, or morphine withdrawals. They're not sure which. Fortunately though, he's a tough little fighter and his blood pressures are so far stable and he's only required a little O2 respiratory wise to get him through this. They're going to try and get a rigid catheter in him this afternoon (where they'll put it I don't know). Then they'll give him plasma pheresis (spelling?) to try and clean his system out. He's never been through this so if any of you have any experience or advice on this, let me know. I sure hope it works so my guy can get a break. Thanks everyone who has been doing so much for our family through yet another needy time. Your continued prayers and support have been wonderful. Know too that I'm praying for you all and especially all of the kiddos who are sick and/or who are also inpatient.
Tuesday, December 13, 2005 3:52 PM CST
Carter has had a pretty crummy couple of days. His fevers had subsided over the weekend, but late Sunday he started spiking higher and higher and yesterday he was more miserable than I've seen him in a long, long time. The blood cultures from his line have all been negative. Yesterday, a peripheral culture did come back positive. They have him on four different antibiotics now, including Linezolid (one of the big guns). It seemed to help a little last night. He was finally able to rest without writhing around in discomfort (he's also on morphine). But this morning he started spiking again. I'm really hoping this bug is on its way out the door. He also won't talk to anyone because he says his throat is broken. I think its still sore from the breathing tube. Hopefully, he'll improve a lot more by tomorrow. I guess he's getting hit hard too because his immune system is so weak right now. He just looks so very sad.
Sunday, December 11, 2005 8:26 PM CST
Carter did finally get extubated --yay! That means no more breathing tube down his throat. He's still having a little trouble with lung congestion, so hopefully he'll be able to stay off the vent. We're pretty optimistic. Unfortunately though, his fevers spiked pretty high again today. No one is quite sure why. They've repeatedly drawn cultures (urine, line, peripheral, etc...) and they've all come back negative. Another possibility is that the infection is brewing in his lungs. They're keeping a close eye on him. He'll also have his first scope and biopsy tomorrow.
Bobby is "home" (at the Ronald McDonald House) from the hospital. He should be getting his staples out sometime this week. So all considered, the boys are still hanging in there nicely.
Saturday, December 10, 2005 6:56 PM CST
So far Carter's post transplant course has been pretty uneventful. His fevers seem to be dying down. They're still balancing his dopamine, lasix and fluids. They're talking about extubating him (they tried weaning him off the vent the other day but it didnt work --hopefully better luck this time.) Bobby is up and moving around better and better. He should be discharged soon. I came home after dropping Katie at the airport this afternoon and collapsed into slumber. I've kind of felt like a ping pong ball this past week, bounving back and forth between everyone, and trudging through nine inches of snow is very new to me and very exhausting. But good news is... my boys are hanging in there just fine, so I'm not complaining.
Wednesday, December 7, 2005 10:21 PM CST
Today went well, Carter is doing pretty super. He's still complicated and still has the two on one nursing, but hasn't had any big events which is good. Right now, it is such a balancing act with his fluids and his blood pressures and his many, many meds. But everyone has been taking SUCH good care of him. Usually I enjoy my chats with the nurses during the day. But they are entirely too busy to talk with me right now, which shows you how focused they are. I spent most of the day with Bobby anyway. Unfortunately, his nurses seem a lot busier with other more critical patients (he's on the transplant floor). He had some trouble getting his pain meds this morning, but has still had a very good day. He was able to get out of bed and sit up this evening. So, so far so good.
Tuesday, December 6, 2005 9:20 PM CST
I am totally exhausted, but also very relieved. Carter was up all night last night screaming that he wanted something to "make him happy" (i.e., water or ice chips). Obviously he was not allowed either of the two. So he screamed and screamed and screamed. He's resting peacefully now after his busy day. Both Bobby and Carter made it out of transplant in six hours. Carter's care is still very complicated. I counted thirteen people working on him at once at one point this afternoon. Tonight, he has two nurses taking care of just him. But that gives me so much peace of mind that he's in good hands. He's still intubated and probably will be for AT LEAST a few days. Bobby seems wonderful. He's really being a trooper. Besides having a few bubbles in his belly and a very low grade fever, he was sitting up laughing and talking tonight. Hopefully his recovery will continue to go well and he'll be out in a few days.
Saturday, December 3, 2005 12:38 AM CST
All of Bobby's blood tests so far are showing that Bobby will be an excellent match for Carter. We are very hopeful and prayerful that things will work out best this time around. Bobby also happens to be Carter's exact blood type and the same tissue type, so I'm thinking that may make a difference this time. Will ask more about that on Monday. Bobby has plans to be admitted on Monday morning and my sister will also be flying up from Virginia to help me watch the kiddos this week. It seems like all the angels are gathering to help us one again. Thank you for your help, thoughts and prayers. And please keep on praying.
Tuesday, November 29, 2005 1:07 PM CST
Christian and I are hanging out at the Ronald McDonald House this morning doing laundry. Bobby is at the hospital getting loads of tests done as part of his work-up for transplant. They've set the big day for transplant for next Tuesday. Carter has been doing well over the past few days. His line infection seems to have been easily treated. Has started vomitting again a bit though. But is in good spirits and has been really enjoying his Papa's company. They made a huge tent out of his bed with sheets yesterday. Well, going to pick up Carly and Cam from school in a few minutes then head to the hospital.
Wednesday, November 23, 2005 6:17 PM CST
Since starting antibiotics for his line infection, Carter has perked up a lot. Hopefully we'll be able to treat through. Tomorrow, Kid Power (a group that bends over backwards for hospitalized kids and their families up here) is going to throw Thanksgiving Dinner at the hospital. I'm sure it will be wonderful. There's also not enough room in the fridge for all of the food coming in here at the Ronald McDonald House. We are surely blessed. Carly and I just played Chutes and Ladders. Cameron is playing Xbox football with a new friend he made, and Peanut is playing with his Papa in the playroom. I'm off to the hospital to hang out with "the man" for the night. Hugs and Happy Thanksgiving to you all!!!!
Tuesday, November 22, 2005 11:14 AM CST
Carter is feeling pretty icky today. He threw up twice this morning and has been running fevers since yesterday afternoon. I haven't heard about the results of his blood cultures yet, but I'm willing to bet something's growing in the line.... sigh. He'd been doing so great lately too. Hopefully whatever it is will be short lived. Bobby gave a whole bunch more blood yesterday afternoon as part of the work-up for transplant. They also started him on a medication to treat his high blood pressure. Carly and Cameron started school up here today. Carly has been bawling her eyes out since yesterday at the whole prospect of it, telling me she doesn't want to go to school. Seems strange to me since she barely hugged me good-bye on her first days of Pre-K and Kindergarten back home --so happy and excited to start, but I guess starting a whole life in the Windy City (however temporary it may be) is a bit overwhelming. Cam seemed a little stressed too, but he was a trooper. Can't wait to hear how their first day went. Peanut is hanging out with me here at the Ronald McDonald House today, playing in the playroom and helping me do laundry, while Bobby visits Carter. That's about it for now. Will update more as plans for transplant firm up.
Saturday, November 19, 2005 10:11 PM CST
Today we had more fun. We went to the Pediatric Oncology Festival (really supposed to be for Oncology families, but we've been at the hospital so long they invited us too). They had really good food (which Carter can't eat, but I enjoyed it... he got a sip of soda out of it). He also got a new winter hat, some stuffed animals, had a picture made, but his most favorite part, and mine too, was getting to finally see Nurse Liz's son perform. Carter sat down right in front of the keyboard and just watched in awe as Adam sang. Then he got up and danced. I kept telling Liz and Adam that Carter is going to join him in a few years. The kiddo LOVES to sing and dance.
We didn't stay too long though. Carter got tired and was a little overwhelmed by the crowd. He spent most of his day playing with his buddy Ivie and with his new Thomas toys that his favorite nurse bought him. At the rate he's going, Santa won't need to stop by Carter's room this year.
Tomorrow is a pretty big day. Back home they're going to have a kickoff meeting for Carter's fundraisers. If anyone is interested in helping out with fundraisers in the future, just send me an email. I thank God for my friends who are taking the time out to do that.
Tomorrow also will bring my much awaited company! Can't wait to finally get my family reunited again. Yay! Peanut is having a really hard time struggling with separation anxiety lately. He's really been acting out a lot. Kind of hard to tell with him how much of it is "the terrific twos" and how much of it is missing Mommy, but Bobby says he's been an emotional mess. Cameron's grades are also dipping way too low. Hopefully things will be better when he starts school up here. Hopefully everyone will perk up a bit again soon.
Wednesday, November 16, 2005 4:50 PM CST
Today has been busy. But fun busy. Carter and I just finished a pillow fight. This morning he had music therapy and played in the play room. I have been decorating signs, helping Ms. Bernice (child life lady) get ready for the Thanksgiving Oncology Festival this weekend. I just can't seem to get away from child life work....lol. Besides fun stuff, not much new. Waiting to hear back from the doctors to see when they think the exact date for transplant will be. Will let ya know.
Tuesday, November 15, 2005 7:17 PM CST
Today was good. Carter played with his therapist this morning and spent a lot of time in the playroom today. He was in a very good mood. He got worn out and went to bed early.
Not much new to report. Dr. Benedetti said he will do Bobby's work-up for transplant once he gets up here. So we're just hanging out waiting for the big day.
Monday, November 14, 2005 5:54 PM CST
Not much new to report. We're still making plans for Bobby to get up here and donate at the end of the month. They have cut Carter's tube feedings down from 30 cc/hr to 10 cc/hr because he just wasn't tolerating them. But besides that he's still doing well. Still running through the halls pretending he's a train. He's strong enough to open up doors now. The TPN is getting him really fat too. Gotta fatten up the little turkey before we stuff him...lol. Okay, please forgive my warped Thanksgiving time humour. ...Besides that not much new. Waiting for a bigger room at Ronald McDonald to open up that will fit my gang. Found a nice little school nearby for the kids to go to temporarily while they're here. Hoping my sister or mom can come up and help babysit at transplant time. With continued prayers, everything will work out, I'm sure.
Wednesday, November 9, 2005 8:33 AM CST
Bobby said the fundraiser dinner went well last night. Thank you all at home very much who were able to help out with that! Dr. Benedetti is planning on doing another transplant with Bobby as the donor at the end of the month. We found out he has the right blood type. Over the past week, they were able to get the jtube in place, but even after putting a lot of formula through it, there still appears to be very little movement through the bowel. Dr. Benedetti feels it would be best to get him transplanted soon to avoid him getting sick while waiting (like he did before his last transplant). So, unless there's major improvement within the next couple of weeks, it looks like we'll be facing another transplant. Please keep praying. And if you could, please also pray for Carter's transplant buddy/future bride back home. She's also in the hospital and feeling under the weather right now.
Saturday, November 5, 2005
I was so hoping we'd see more progress by now. They increased Carter's tube feedings again today. But still we haven't seen any progress in the poop department. This probably means bad news either way... Either his jtube has moved back into the wrong place again (they've already gone in to try and fix it four times now!), or the jtube IS in the right place and his bowel just isn't working. Guess they'll run tests soon and we'll figure out which it is. Besides that, he's the healthiest darned kid in the PICU. The TPN has truly made a difference in his life these past months. I remember in early summer when he would just whine and cry and sit around all day. Now he's literally running through the hospital halls laughing and playing with everyone. This makes me very glad, but I just wish he had more wide open spaces in which to run. --Wide open spaces in NORFOLK! He's managing much better than me being away from home. I don't think he misses his sibs nearly as much as I miss them. He's definately enjoying the one-to-one Mommy time. He's also been quite persuasive in talking several of the staff memebers into buying him Thomas the Train items. He'll make a great politician someday.
FOR ALL OF YOU BACK HOME WHO ARE INTERESTED: THERE WILL BE A FUNDRAISER TO SUPPORT CARTER'S TRANSPLANT EXPENSE FUND ON TUESDAY NIGHT AT FRIENDLY'S RESTAURANT (JANAF LOCATION). I HOPE SOME OF YOU CAN MAKE IT. A PORTION OF THE SALES WILL GO TO CARTER'S COTA FUND. THANKS FOR YOUR HELP!!!
Tuesday, November 1, 2005 9:51 PM CST
Carter had a blast trick-or-treating yesterday. Here, they take the Peds. kids through the whole hospital and let them trick-or-treat on all the floors and departments. (They let Carter take walks here, but still don't let him in the playroom. I guess they figure since he hasn't grown resistant bugs in three years that its okay.) We had so much fun, and he was cute as a button... "toot-tooting" all over the place. He made everyone call him Thomas, not Carter. If I ever get back home, I'll post the pics. We gave all the candy away since he can't eat it, but we kept all the lollypops. The child is basically on a lollypop diet right now. --Licking, no biting, since he still can't have solids.
They took him back to the GI lab today to try and get the jtube back in place. Today was NOT fun like yesterday. He was intubated for over four hours. Unfortunately, they were unsuccessful again at getting the jtube back in the right place. The new connection in his bowel is at such a difficult angle that its really making things hard. I'm kind of worried that it might make him very difficult to scope in the future. The new plan for jtube placement is to take him back to the OR and surgically place it. Ick. Will know more tomorrow probably.
Saturday, October 29, 2005 4:45 PM CDT
Its been a cooky week. We were supposed to get released early this week, but he had another positive blood culture. Gram negative bugs. No fever, just an elevated heart rate. Hopefully it will be easy to treat through. They've had SUCH a hard time with this jtube too. They still haven't got it in right after trying twice. First time the tube was too short and flipped back into the tummy. Second time they tried it took almost two hours and the tube ended up floating up in the duodenum (obstructed part) so that does us no good. Looks like Carter and I will go trick or treating in the hospital. But hopefully once they get the jtube in the right place this week, we will start making progress???? They listed him for transplant on Thursday just in case we don't make progress.
HAPPY BIRTHDAY CARLY!!! I LOVE YOU AND MISS YOU SWEETIE!!! HAVE FUN TONIGHT AT YOUR PARTY WITH GRANDMA & POP POP FROM THE MOUNTAINS!!!
Wednesday, October 26, 2005 2:17 AM CDT
A little bit bummed. Found out today that we probably won't be going home till early next week. ...Which is good, I know, but I had wanted to be there for Carly's birthday this weekend, to see my parents who will be visiting, and to be there in time for trick or treating. Oh well...
There is a little more hope on the Carter front. We found out why he's having such a huge amount of gastric output. Their thinking had previously been that he was refluxing formula up from his intestine into his stomach, and that his bowel just isn't working. Well they did an xray and found out his jtube, which is supposed to be in his intestine, feeding food to it, is coiled up in his stomach. So everything that's been going in the jtube has been coming right back out the gtube because they're in the same place. So all this time his intestines may have never been getting fed, which explains why he hasn't been pooping. They're supposed to fix the problem tomorrow, and hopefully when they do, there will be progress. They also started clamping his gtube today. Hopefully he can tolerate it, and that will help push things along. I'm a bit more hopeful now. I can't believe I'm actually looking forward to dirty diapers and frequent potty visits. But it beats all this transplant talk that's been going on. Will update more soon.
GOOO SOX!!!! (I actually got to see them play up here this summer before they became so famous and popular.)
Saturday, October 22, 2005 0:08 AM CDT
Good news and bad news. Good news is it looks like we get to go home soon. Bad news is it doesn't look like they can do a whole lot more to get his gut working any better right now. Dr. Bennedetti is going to talk to one of his colleagues at another very experienced transplant center to see if he has any more ideas. But there was more talk again today of listing him for transplant. We'll see how it all pans out once all the docs get their heads together. I had a good long talk with one of the PICU docs tonight who really helped me get things in perspective. At least at this point, Carter isn't as sick as he was the last time he was listed. His liver function is good, he's had less line infections lately (knock on wood), and it appears some more line access has opened up and might be available if he needs it. He's also a little older now and maybe a little stronger than he was a few years ago (although he was pretty tough then too). Those are all pluses and, we at least have a little more time at this point to sort things out. So, we will probably go home, take a break, and just wait things out for a while. Maybe in the next several weeks his gut will finally decide to wake up and kick in, who knows? I'm hoping, at least we can take a little break and enjoy the holidays together at home.
Tuesday, October 18, 2005 2:56 PM CDT
Getting a little concerned again. Carter is getting a ton of feedings through his jtube right now, but very little is coming out, like it should, in the form of stool. This is very unusual for him. Usually right after a surgery, he goes and goes and goes. So now there's a concern that his motility still isn't right and that he's refluxing from his bowel back up into his stomach, because he's having way too much gastric output through his gtube. We'll have another GI study done tomorrow or the next day, and we'll hopefully see better what's going on down there.
Friday, October 14, 2005 11:16 PM CDT
Things are progressing slowly, but progressing nonetheless. Carter had a couple of small bowel movements last night and this morning, a hopeful sign that things are passing through. I feel funny bragging about bowel movements, but these things are important...hehe. Carter was busy playing today with his physical therapist, occupational therapist (twice--he seems to really like Miss Megan) and he had music therapy for the first time today. Miss Brianne brought her guitar in and Carter played marracas --very cool stuff. Overall, he seems to be perking up a bit each day. He's still pretty sore and weak, but we'll work on walking some more this weekend.
Wednesday, October 12, 2005 10:45 AM CDT
Dr. Benedetti stopped by a little while ago. He said he doesn't want to give me false hope, but he is more optimistic now than he was a few days ago. So, I'm more optimistic now too. The true test of course will come over the next few weeks. Hopefully his gut will be up and running again. All the docs and nurses are definately crossing their fingers. Meanwhile, Nurse Liz is spoiling us up here, making sure I have more than enough to eat and Carter has enough toys. Carter is still in morphine land right now. He wakes up only to ask for pain meds. So today is a quiet day.
Tuesday, October 11, 2005 7:18 PM CDT
Great news. It doesn't look like another transplant is in our immediate future anyway. They said the bowel looked better, so they went ahead and made a new connection so that the stomach can empty directly into the bowel, bypassing the duodenum (obstructed part). So needless to say I'm very relieved right now, exhausted from the roller coaster ride I've been on, but relieved.
thanks again for everyone's prayers, Nichole & Carter
Sunday, October 9, 2005 9:32 PM CDT
It looks like Tuesday will be the big day for Carter's surgery. We won't be making any big decisions, of course, until then. We've spent the weekend just hanging out. Ivie's daddy figured out how to get the batteries in Carter's Thomas the Tank Engine, so now its working the right way. It puffs out steam and lights up and makes noises. Carter loves it. Now when he takes his walks in the hall, he makes train noises, and he still wants to be Thomas for Halloween, of course. He spends more time watching Thomas movies and less time watching Barney now. We're finally entering a new phase. He also watches his Sesame Street "Let's Eat" video a lot, even though he can't eat anything solid. I guess he feels it gives him something to look forward to. I sure hope so. He is enjoying popsickles though. (They are just suctioned right back out of his gtube, so they don't get stuck in his belly.) He has had purple and red lips all weekend.
Friday, October 7, 2005 10:04 PM CDT
Carter's spirits are still great. He was a bit cranky to everyone today. But he got some play time in with a volunteer, and with the occupational therapist and with Ivie's parents this evening. I think he was just tired from waking up early and not taking a nap. Still no fevers. Dr. Brown from Peds Surgery stopped by and is very happy that they seem to have treated through the line infection. They were pretty wimpy bugs, not the nasty resistant type he's grown in the past, so that is good. Dr. Benedetti stopped by also, and was asking about Bobby's blood type and his interest in donating. Carter hasn't had a bowel movement in about three days now, so good bowel function is not very probable. But still they will go in (probably on Tuesday) and see if there is any way to avoid another transplant. The transplant surgeons don't really seem optomistic to me though. We'll keep praying and we shall see.
I called COTA (Childrens Organ Transplant Association) about setting up a transplant fund for Carter. They're going to send me the paperwork. We should have done this years ago. But we have some folks at home that have already shown interest in helping out with our campaign. So hopefully we can get that going. Still, prayers are what we need the most.
Thanks everyone for your thoughts and prayers.
hugs from the Windy City --which is already getting windy and cold,
Nichole & Carter
Friday, October 7, 2005 7:31 AM CDT
Considering all thats going on, yesterday turned out to be a pretty good day. They've been keeping Carter busy the past few days with Occupational therapy, Physical Therapy and a student nurse who played with him all afternoon. He loves the Thomas the Tank Engine train set that Baby Ivie's daddy bought for him, and has spent hours with that. He's been pretty comfortable since they removed the g/j tube. The mickey button actually seems to be draining very well, so his tummy isn't hurting from distention and he's not throwing up because everything is draining right out. He can only eat clears, of course, but he doesn't seem to mind too much. Other good news, his fevers have stopped, so they think they're successfully treating through the line infection and might not have to pull it. And they did a doppler duplex study of his veins and his femoral vein on the left side seems to have miraculously opened up, after being clotted off only a few months ago, so he might have another spot to put a central line,if need be in the future. So, thank you for the prayers, they're really working. Maybe if we all keep praying, Carter won't need another transplant. But even if he does, I know everything will work out. Oh, I got the "distraction" I said I needed too. Ivie's parents both came back yesterday. We went out to eat at Al's Italian Beef last night... one of those Chicago landmarks, so I got to try an original Italian beef sandwich. Ivie still continues to do super. She's doing great after having her skin graft done, and there's talk of reversing her ostomy soon. So thanks all for the prayers, they're really keeping us going.
I know a few of you have had a hard time getting in touch. As you can imagine, they're really busy in the PICU. If you need to leave a message for me, you can call 773-348-5322 ext 48 and leave it on the Ronald McDonald House phone. Mail also might be safer going there. The address is 622 W. Deming Place Chicago, Il 60614.
Tuesday, October 4, 2005 9:32 PM CDT
When it rains it pours I guess. Walked in this morning and Carter's jtube was clogged, and no matter what they did, it stayed that way. He spiked (another) 102.5 temp this morning as well. Come to find out he has gram positive and gram negative bugs growing in his central line. Lovely, considering they can't just pull it. Where will they put a new one? He was also in a whole lot of pain today. He kept complaining his gtube was hurting. I think it was the combo of his pulling sutures and his distended tummy causing the tube to hurt. Finally, this evening, they pulled both the g and the j out and put his Mickey button back in. I think that was the happiest point of our day. We also had the upper GI study done, and I wish there was better news to give. Another obstruction has formed. We kind of already knew, but it hurt to actually see his duodenum filling up and getting huge all over again... Nothing going through. Dr. Benedetti swung by tonight and looked more concerned than I think I've ever see him look. Usually he's the eternal optimist, but he seems very concerned about the future of Carter's bowel. His next surgery may be done on Monday (if the line infection hopefully clears) and that will determine whether or not they think they can do anything else to save the bowel. The last time they went in, his bowel had mysteriously shrunk in half and looked like it was in pretty poor condition. One of the PICU doctors said they're so used to preparing themselves for rejection, or viruses, or graft versus host disease, which they all know can damage the bowel. But they're pretty stumped with Carter. He has none of those things, yet still the bowel looked so bad. Who knows, maybe when they go in next week, things won't be as bad as they seem. The hardest part is having to wait until next week and having to stew over my worries all weekend. Definately need some distraction. Melissa, Hawkeyes is looking pretty good right now...lol.
Sunday, October 2, 2005 10:27 AM CDT
Hi all,
Things are good, but moving along very slowly. The results from his GI study on Friday showed that things are moving through the jtube through the jejunum just fine. Now the trick is getting them to move from his tummy all the way through. They've tried taking his gtube off of suction to get things moving through below, but when they've tried this so far, he gets really bad belly pain and distention. Last time we were here, this just took some time, and unfortunately it seems to be a slow process this time too. They will do another GI study early this week to see how things are moving from the gtube (his stomach)all the way down. If we can get things moving all the way through, Dr. Benedetti said we may be able to get transferred back home to CHKD. I really hope this will happen soon. I really miss the kiddos and my new job, and I'd like to get home in time for the October birthdays coming up. Talked to the kids back home this morning and they seem to be doing pretty good. They kept blowing in my ear pretending there was a bad connection and thought is was SO funny. Peanut had a rough week with some teething issues, but seems back to his old wild self today. Carter wants to be Thomas the Tank Engine for Halloween --finally a change after being Barney three years in a row! Will try to get you all updated after the upper GI study gets done.
hugs from Chi-town
Tuesday, September 27, 2005 9:55 AM CDT
Carter had a pretty rough weekend, but started finally coming around yesterday. They gave him a blood transfusion Sunday which I think perked him up a bit, and they have his gtube to suction, which I think is helping his belly pain. They started putting Neocate (formula) through his jtube, and he started pooping, so that is VERY good news. They plan to to a GI study on Friday to make sure things are working smoothly. I'm getting homesick a lot faster this time. I hope we can get back soon.
Carter's transplant buddy, Ivie, down the hall always manages to cheer me up. Whenever I need to smile, I go visit her. She is sooo funny. She thinks everything is funy and is full of smiles and kisses. She's like a whole different person from when I met her a few months ago. Her color looks so much better. She's coming along so great.
:-)
Saturday, September 24, 2005 11:50 AM CDT
Some good news, I guess. When they went in to do surgery, they found that the duodenum was not the culprit. So they didn't have to cut on the bowel or reanastamos as planned. The duodenum was still pretty patent. But the area just below the duodenum was a mess. The bowel was tangled up in sort of a ball and looked pretty bad. It was stuck all together with scar tissue and adhesions. When they removed the adhesions though, it pinked up a bit. They also took a biopsy from that spot because they were worried about rejection, but it came back fine.
The little man is being a trooper. Sleeping mostly. He wakes up every once in a while and asks for medicine (morphine). He even asked for ice chips this morning -- the only food he can have at the moment. But when the nurse brought him some, he didn't even eat them. Just went right back to sleep. I'm happy he's resting well. Now will pray that the admission is short, because I'm needed at home. And also praying the adhesions won't come back. Sometimes they have a tendency to, I've heard.
Hugs from Chicago.
Thursday, September 22, 2005 3:29 PM CDT
We got back here in Chicago last night. Its been another eventful week. Carter was throwing up more and more at home. So he went to CHKD to have an upper GI study on Tuesday. The results showed another obstruction. So they med-flighted us up here again last night. Feels sort of like de ja vu. Another surgery is planned for tomorrow --a big one. They plan to resect his small intestine directly to his stomach in order to bi pass the part of his duodenum that is not working (again). Please say a little prayer for us. Hopefully this admission won't be as long as the last.
Saturday, September 10, 2005 1:23 PM CDT
WE'RE HOME!!!!
Carter is on a gazillion meds, including TPN, and its a lot of work, especially considering that he's still vomitting. But I'm so happy to be home with my other kiddos. Christian is so funny. He gets mad whenever anyone else tries to hug me. I was scared he wouldn't remember me, but obviously he still does. :-)
Can't wait to walk Carly and Cameron to school this week. I made it home just in time for open house Tuesday night. Hoping to get back to work soon too. Good to be back. Hopefully we'll stay here for a while.
Sunday, September 4, 2005 1:14 PM CDT
Just hanging out here on 5 West on this lazy Sunday afternoon. Good news. They're cycling his TPN in order to get him off as many hours as possible. Then, we can go home sometime this week after the holiday (as soon as all the home health people go back to work and can get our supplies up here.) Yay! Hope all of you have a nice holiday weekend.
hugs from Chi-town, Nichole & Carter
Wednesday, August 31, 2005 4:06 PM CDT
Carter went for a central line placement today. It went really well. They got a line in his left IJ. The docs at home were worried about putting one there because of the risk of SVC syndrome. But we really need a line in, so we'll just have to see how it goes. They're talking about sending us home soon. His gut still isn't working well, but they think its just going to take a while. He's still putting out over a liter a day. So we'll be going home on fluids, possibly TPN. So that's about it for now. I just found out he's crying for me to come back to the room, so gotta go. hugs from Chicago.
Saturday, August 27, 2005 3:13 PM CDT
Hello everyone
Carter's "bug of the week" is some sort of fungus that's growing out in his blood and stool. They're treating it, and drew new blood cultures today. They're considering putting a new line in him and sending us home soon, but the fact that he's been growing yeast and enterococcus out in his blood stream is making me really nervous about having a line in. It would be lovely to get home though, even if it is with a line, TPN, etc...
Carter's buddy Baby Ivie is doing really well. You think Carter's cheeks are cute... she is such a doll, and full of smiles these days. Please pray for her as she gets the small intestine part of her transplant this week. She's come a long way since getting her liver. Your prayers are working. :-)
Well, not sure when we're getting back. Carter is getting restless these days as he's getting a lot more energy. I do really think the TPN is helping a whole lot. He's still pooping up a storm, but looks great. TPN can be a wonderful thing. Unfortunately, as we all know, when they're on it too long, it becomes an evil thing. But we're enjoying it for now.
more hugs & prayers from Chi-town, Nichole & Carter
Wednesday, August 24, 2005 5:52 PM CDT
We just got back from a CT scan. They want to make sure his gut isn't leaking anywhere, because his blood culture grew out enterococcus (a gut bug). But today is much better than Monday. No more high fevers, so I guess the antibiotics have kicked in. He also had another scope done yesterday, and so far it doesn't look like rejection. But they didn't expect that. The reason they biopsied was really to check for some kind of fungal infection (not going to attempt to spell it) and to test for adenovirus. We're still waiting on those results. His tummy seems better today, but still having lots of poops. But besides being a grouch, I'd definately say he's perked up and seems to be eating better today.
Special thanks to Edmarc for giving our family so much support at home and thanks to Kid Power for lending a hand with things up here!
hugs from Chi-town, Nichole & Carter
Monday, August 22, 2005 2:17 PM CDT
Sorry its been a week since I updated. Well, we're still here. Late last week, Carter had begun to make progress. There was talk of putting another central line in him and sending us home on TPN until his loose stools resolve. We were very excited...
BUT... this weekend came and he's sick AGAIN. Started puking, needing tummy drained, the whole bit, and started spiking mystery temps. He's negative for cdiff now. They said one of his peripheral blood cultures was testing positive for gram positive cocci with clusters (hopefully a contaminant?) He doesn't have a central line, so don't know where that came from. Nonetheless, he's on a slew of antibiotics again. His temp right now is 102.8. Needless to say the line placement has been postponed, and we're in limbo for at least a few more days I guess.
Starting to stress a little financially too. If we don't get out of here by the 31st, out SSI check (check we use for rent) goes down from $550 to thirty bucks. Trying to see if they can discharge us for a day or two, but I'm not even taking him to the Ronald McDonald House with temps this high. Ah well, another day in the life of a chronically ill kiddo. I know many of you can relate.
hugs from Chicago, Nichole & Carter
Monday, August 15, 2005 10:13 AM CDT
I'm on my way in to the hospital, so I thought I'd swing by the library real quick. Carter's second biopsy results came back even better than the first, so they think if he was in any kind of mild rejection, he isn't any more. But now he is testing positive for cdiff. This is very bothersome, seeing how he was already being treated for it. I guess it goes to show that things still aren't getting into the bowel well. The antibiotic he was on for cdiff was being taken orally, so now they're going to put it directly into his jtube. He also is getting 14 mg a day of Prograf!!!!! At home, he only needed 3 mg to keep his level stable, so we're definately still having some absorption issues up here. Dr. Holterman told me yesterday that they're going to do another upper GI to look at things closely again. He mentioned possibly putting a stent in to try and help open the partial obstruction up some more. We shall see...
On a very happy note, two of my transplant buddies from my internet support groups came to visit me yesterday. It was such a blessing to get to meet them. Lynne (grandma) and Bri (mom) of Angel Dylan, who passed away waiting for a liver and small bowel earlier in the year, came all the way from Peoria to meet us and they gave Carter a little game which we played yesterday afternoon. It was so sweet of them. You should read what they wrote on Dylan's webpage: www.caringbridge.org/il/dylan.
Also, Kara's baby Ivie (who had the liver transplant a few weeks ago) is doing better. They're weaning her off the ventilator. She'll be getting her second transplant at the beginning of next month (small bowel). At the rate we're going I guess we might still be here for it. Kara is an awesome mom and friend.
Thursday, August 11, 2005 5:25 PM CDT
We got the biopsy results back and it showed no rejection, but the PICU attending doctor still seems very concerned. She's confused why it looked like rejection, but the biopsy results were negative. Soooo, they're running tests for CMV, EBV, & adenovirus, and they're going to do another scope with biopsies tomorrow. This time they'll do an EGD (from the top). Last time they went up from below because they were afraid to go through the area where he just had surgery. But now they think it should be okay and is necessary, so we'll let you know the results in a few days. He's putting up with everything fairly well all considered. He has his puffy cheeks back because of the mega dose steroids --so cute, my little chipmunk. :-) His latest ailment is the diaper rash on his bum that they're also treating. He goes back and forth complaing about that, his IV (which is working fine) and his tummy being either too hungry or too full. Gotta love him.
Wednesday, August 10, 2005 8:12 PM CDT
Sorry no new updates today. Still waiting to hear about the rejection. Took longer to get the biopsy results back than we thought. Will update again tomorrow.
hugs, Nichole & Carter
Tuesday, August 9, 2005 6:49 PM CDT
Today was eventful. Carter had a scope done. Dr. Testas wanted to rule out rejection because the Prograf levels have been off lately. I didn't think much of it until they looked at the bowel and it was all inflamed and ulcerated. They said they would have biopsy results in by noon tomorrow, so we shall see. One doc thinks it looks like rejection, the other one isn't so sure, so you know how that goes...
Meanwhile, there's still an obvious stricture in his tummy. They gave him Go-litely to clear his gut out last night and all day today, and he really wasn't pooping that much. Well, they put his gtube to suction this afternoon and all of the Go-litely came back out. So food still isn't getting to the bowel the way it should.
Our little transplant buddy also has a lot going on. She's getting a stent placed tomorrow to open one of the bile ducts.
Your continued prayers are awesome. Also praying for our other sick friends out there.
Monday, August 8, 2005 12:50 AM CDT
The weekend went so so. They tried stopping his TPN the other day since he was up to 40 ccs an hour on the tube feeds. But that didn't work. He became dry very quickly, so they're trying to wean him off the fluids now. Its a very slow process because he's been having way too much diarrhea. They're doing stool cultures to rule out cdiff (an intestinal infection associated with antibiotics) since he's been on so many antibiotics lately (cdiff is NOT what we need right now). They're also going to take some xrays today because he's been complaining of tummy pain since last night. He also threw up again last night --grrrrr. This is not the direction I'd been hoping to go in at this point, but hopefully its just a minor glitch. At least I have a friend to keep me company this time. The other transplant mom I wrote about earlier is staying at the Ronald McDonald House too, and we're riding the train back and forth together. Nice to have moral support. Please keep praying for her baby girl.
I've been into creating little children's books lately. You have to do something to keep your sanity in the hospital. I made one for Bobby and the kids with this silly little poem...
For Bobby, Cameron, Carly, and Christian:
MAMA & CARTER'S LITTLE LONG SONG
THIS HOSPITAL STAY HAS BEEN WAY TOO LONG...
A LONG, LONG DRAWN OUT SAD OL' SONG.
WE WANT TO GET BACK TO THE BEACH AND THE BAY.
THOUGH IT SEEMS OUT OF REACH AND SO FAR FAR AWAY.
WE WANT PAPA'S COOKIN AND TO DANCE AND GIVE ZERBERTS,
AND GIVE HUGS, AND GET LOVE AND TO SHARE WALMART SHERBET.
WE MISS THE PLAYSTATION AND DRESS UP CLOTHES TOO,
AND SEARCHING THE HOUSE FOR PEANUT'S OLD SHOE.
BUT FOR NOW, KEEP IN MIND GUYS HOW MUCH WE DO MISS YOU.
HOPE IN A GOOD WEEK WE'LL BE RIGHT THERE TO KISS YOU.
CAN'T WAIT TO JUMP UP ON THAT BIG SILVER TRAIN
THAT WILL CARRY US HOME TO OUR FAMILY AGAIN.
Thursday, August 4, 2005 9:37 AM CDT
We lost the line that the doctors back home worked so hard to get in. Lipids started pooling at the insertion site. So they stopped everything. Later when the doctor went to look at it, it flushed fine, so they started his TPN and lipids back up again, and his whole leg turned red! Needless to say, no more central line. And, in Carter style, he's starting to do something else weird... His blood pressures have been way too high. But besides that, I think we're still making progress. He is almost at 100% jtube feeds, and is draining out less gastric secretions. Maybe he'll be able to start solids soon and get out of here! ;-) Thanks a bunch for all the prayers. They're keeping us all going.
P.S. An update on one of our transplant buddies up here. Mom was able to donate (a portion of) her liver last week!!! If all continues to go well, the baby will get a portion of mom's small bowel in September. What troopers they both are. Please say a prayer for their family, for they are far from home too, have other little ones at home,and looks like they'll be here for quite some time.
Monday, August 1, 2005 9:45 AM CDT
Carter's surgery was smooth sailing on Friday. His recovery has been a little bumpy so far though. He became hyponatremic for no apparent reason on Friday night. They were giving him lots of extra sodium, but he had a really bad seizure and started desatting. (Yes, I was scared to death.) But he only went into convulsions that one time, and they think the sodium may have had something to do with him needing extra steroids during a stressful event. So they gave him some hydrocortisone and he's been doing better with his sodium levels. They said in the future he may need steroids priorto surgery. He also now has a urinary track infection. But he hasn't had a fever since yesterday, so the abx. are kicking in I guess. He's had to have a couple of blood transfusions too. But they've been drawing so much blood for his labs that I'm not surprised. We are making progress today. They decided to let him have his ice chips again, and they're going to start tube feedings at 3 ccs an hour, so I think we're making progress now. :-)
Thursday, July 28, 2005 4:14 PM CDT
Carter is doing great. He's really perking up. He actually asked to go for a walk down the hall today!!! He looks a lot better since they put him on the TPN and Lipids (he calls it applejuice and milk). So tomorrow is the big day, but it looks like he's in good shape for it. Thanks for all the prayers. Our neighbor down the hall received a living related liver today, so its been a busy week up here. Will try to get by here again tomorrow after the surgery and update everyone.
Tuesday, July 19, 2005 3:04 PM CDT
7/25/05 Sorry its taken a few days to update. The medical library where I use the puter is closed on the weekends now because its summer session for the college. Yes, we are back in Chicago. Carter is scheduled for surgery Friday morning. I thought they'd be doing it sooner, but they weren't happy with his nutrition status (duh) or his albumin level, so they decided to pump him up with TPN for a few days. He's also on a boatload of antibiotics to treat the cesspool that they found in his duodenum. Turns out this pouch they created at the anastomosis site has dilated and food and fluid is just sitting there like a collection tank. It literally looked like he has two stomachs on his upper GI study. Thank God Dr. Batres at our hospital back home ordered that! I seem to recall asking if that test would be appropriate three months ago, but oh well, at least it finally got done and we finally have some answers!!! The surgeons up here are very optimistic that things will get back to normal again once this problem is fixed. yay.
Please send up a few prayers for another transplant family up here. The baby needs a liver/small bowel transplant like yesterday, but the family's state medicaid is so far refusing to pay. I ran into this just a few months ago with another family who was up here. Its so heartwrenching.
Sorry for the depressing entry. Believe it or not though, Carter has been perking up slightly eversince getting the central line in and not getting poked as much. Still the occasional temper tantrum, but what can you do. He says he can't wait till they fix his belly so he "can go eat on the train." Guess he really enjoyed the train ride home last time. He's also been talking about the apple juice and milk (tpn and lipids) that is going into his line. Too cute.
7/21/05 I'm so tired, but should be able to take a nap today once we get back to the floor. Carter spent the night in PICU just for observation. He spent about 6 hours in the cath lab yesterday. They managed to clear out one of the clots and got a femoral line in... a little scary because he still has potty accidents and he's so darned prone to line infections. But hey, at least its a line, so that is very good. They still haven't gotten biopsy results back from the scope, so they still aren't totally ruling out rejection, but the bowel looked okay. They did find a blind pouch at his anastomosis site that has become extremely dilated and is hoarding in fluid and food. It may have to be removed surgically. ...Just still running tests for now. No concrete answers yet as to the cause of all the tummy troubles, but at least we have line access and some good clues. Thanks for all the prayers.
7/19/05 Don't know where to begin really... We were admitted on Friday for weight loss/ dehydration/vomiting. They think his tummy woes over the past few months are a result of rejection. But we'll find out for sure tomorrow (after we get a scope done) whether its rejection or eosinophilia acting up. If its the latter, we have to find out what it is that he's still allergic to that we don't know about, because we've cut out so many foods, but something in his environment may still be causing havoc. The doctors, however, are really leaning more towards rejection at this point.
Our other big huge issue (as if the previous weren't enough) is that Carter has to have TPN again, (he's emaciated and basically wasting away) which means he also needs a central line again. We had a PVL study done this morning to try and figure out where to place a central line, and the results were VERY scary. The only access he has left now is hepatic and assicus (spelling?). They would have to cut open his tummy to place one of those. The docs here are so great though. They're trying really hard to find another option. They're talking to one of the cardiologists in the cath lab to see if they can somehow roto rooter the clots out to get more access.
Well, that's it for now. Will let you know the results soon.
hugs & prayers, Nichole & the major grumpy bear Carter who is exhausted from being poked
Saturday, July 2, 2005 5:28 PM CDT
Our GI doc squeezed Carterman in yesterday. Very nice of him to set up a last minute appointment before the weekend. Carter has been put back on gtube feeds to increase his calories. He's skinny as a rail and we have to do something. Hopefully he'll tolerate them, and in conjunction with the growth hormone, his weight will increase. Still uncertain about the vomitting. His eosinophil (allergy cell) count was really high again. We're going for a stomach emptying test too, so hopefully we can figure out something. Getting REALLY tired of cleaning up pukey messes. Our poor carpet...lol.
Monday, June 27, 2005 8:50 PM CDT
Not too much new to add.... the new job is still going great. Carterman is still getting sick a lot. We'll be talking to the docs tomorrow about that. He's been following his diet so strictly and still getting sick about once every day or so. He really doesn't need to be doing that and losing MORE weight. He gets labs this week, and I'm a little scared to see the results. Good news though... we're FINALLY starting growth hormone this week, so we're praying for some good results from it. And I know I can't complain too much, he's been able to get out and have a fun summer with the sibs. We visited Grandma and Pop Pop Smith this past weekend and enjoyed seeing all the pretty mountains and horses and cows. We also all went swimming. It was a beatiful weekend for it and fun to get away for a bit.
Tuesday, June 14, 2005 5:30 PM CDT
Carter finally made it home from "Club Med" on Friday. He's had some pukies over the weekend. But he snuck into some "no no" foods this weekend too, so we think it may have been an allergic reaction. Poor guy, I think he'd do anything for a piece of pizza right about now, but we wouldn't dare. He's definately still adjusting to the changes in his diet. But besides that, everyone is great. This is the last week of school for the kids. I've started my job at the Childrens Hospital and have fun meeting lots of new, nice people, and of course, have been catching up with the ones we already know there. Very fun so far. :-D
Friday, June 3, 2005 10:53 PM CDT
Guess we've hit another little bump in the road. Carter has an eye infection, something icky and weird going on with his gtube, and pneumonia. He was admitted last night after laying around the house with a fever and diminishing appetite for several days. The antibiotics seem to have already started kicking in, because the fevers is already gone. So hopefully this admission will be short and sweet.
Saturday, May 21, 2005 3:25 PM CDT
It was a little chilly and cloudy first thing this morning. But then, it was as if God parted the clouds and smiled right down on us. It turned out to be a BEAUTIFUL day for a run! Cameron did very well. He came in at just over eight minutes from his mile run. I'm very proud because that was a new record for him. You could tell by his face as he was crossing the finish line just how hard he was trying. In addition to that, he did very well in his fundraising for the Lifenet Foundation. (With some help from Grandpa Dave) He came up with $180.15. It was a very nice event.
Carterman has started up again with the sporadic vomitting this week. We're praying so hard that this isn't a repeat performance of what happened a month ago when he landed in the hospital. Its so hard to tell if its just viral, or if there's another allergy affecting him that we're unaware of, or if its something else that we're totally unaware of. We'll just keep an eye on things and hope that it goes away and stays away. On a happier note, it sounds like we're going to be able to get the growth hormone therapy back for him a lot sooner than I thought. So hopefully, that will help bulk him up. He sure needs it.
Monday, May 16, 2005 6:06 PM CDT
CAMERON IS RUNNING FOR ORGAN DONATION AWARENESS
What: Our nine year old, Cameron has decided to run in the "Danielle Roach, Save7lives.org, 1 mile Fun Run"
When: Saturday May 21st, 9:30 am
Where: 24th St. Park, Virginia Beach Oceanfront
Why: Ironically, Danielle Roach was a friend of Bobby's. She used to work with him on the ferry. All donations from this run go to benefit the LifeNet Foundation, a charitable organization that raises funds to support organ and tissue donation and the donation process. For more info on Lifenet, visit http://www.lifenet.org/. As you all know, this is a personal cause for us. Organ donation has saved a member of our family. Cameron will run in honor of his little brother Carter, and will be asking his family and close friends for a 4$ donation (a dollar for each year of his brother's miraculous life) to benefit Lifenet.
In lieu of a donation, the most important thing you can do for us is to let your decisions regarding organ donation be known to your family. Sadly, an average of 18 people a day pass away every day waiting for organs. We recently learned that intestinal transplants have the highest percentage of people who pass away while on the waiting list -- 35.5
Be a miracle maker. Become an organ and tissue donor. For more info. on how you can, visit http://www.save7lives.org/.
For more info. on the race, visit www.lifenetdonormemorial.com/events/2005_danielle_roach_run.php
Will keep you posted on how Cameron does! Thanks everyone!!!!!
Friday, May 6, 2005 10:36 PM CDT
We're home after a long adventurous train ride home. Carter seems happier, though grumbling a bit about his new diet. I'm grumbling a bit because he's still way too skinny. But we will have Dr. Tsou hopefully take a peek at him soon, and I'm praying we can get our hands on the growth hormone and that it will turn things around for him soon. Besides that, things are good. Happy Mother's Day everyone!
Monday, May 2, 2005 5:20 PM CDT
...Still cold and cloudy here. I think maybe, just maybe, things are finally coming along. We had some big bumps in the road over the weekend, but things have been a LOT better since yesterday morning. Of course spoken with bated breath, but if he gains weight and labs stay stable, we may be heading out of here tomorrow. (After spending two hours in the middle of the night trying to get IV access, I'm ready to go!!!) You know we can't mention the "h" word (home) around these kids though. Hugs and thanks for all the prayers.
Nichole & Carter
Friday, April 29, 2005 6:09 PM CDT
Cold and cloudy here on this Friday evening. Don't know what it is about Chicago, but seems like every time I come here, its cold and cloudy. So far they've discovered that Carter has acquired c-diff (nasty diarrhea bug caused by too many antibiotics). I'm not sure if this is what has been his problem this whole time. It has never caused him to vomit before. And he tested negative for it back home. He was on IV antibiotics last weekend at our home hospital, so not sure if this is a new development and was caused by the added antibiotic or not. And still not sure how the whole allergy/eosinophil thing is tying into everything. His stools actually seem to be improving a bit. The docs up here took him off of gtube feeds and put him back on table food, and I think that is helping a whole lot. They also have started him on Remicade again (an anti-inflamatory, steroid) and have started him on growth hormone therapy. He still has not gained any weight. His output is still higher than what is going in. But besides that, he's happy to be eating and watching Barney all day. Not sure at all when we'll be home, but hopefully not too long.
There's another baby who needs a liver/small bowel transplant next door to us. Insurance won't approve it. The family is working so hard between traveling two hours away from home, looking after three other kids, working a job to keep what insurance they do have. It just breaks my heart. Insurance battles should be the last thing they have to woory about right now. Their baby is precious. Please pray she can somehow get her transplant soon.
hugs & prayers, Nichole & Carter
Monday, April 25, 2005 6:41 PM CDT
The first twenty four hours off of TPN went very well. Then this afternoon came along, and the monster belly came back again. What went in came right back out. The doc says we'll be making plans to head to Chicago tomorrow...sigh. Will keep everyone posted.
Friday, April 22, 2005 6:36 PM CDT
The doc came in this morning and said that we will stay on TPN for two more days. Sunday,we will start tube feedings again, and if those aren't tolerated, its back to Chicago next week. Will keep everyone posted.
Thursday, April 21, 2005 1:11 PM CDT
So far we've found out Carter is allergic to milk, eggs and peanuts, which means LOTS more restrictions to his diet. Still waiting to hear about chicken and beef. The throwing up seems to have finally subsided, but we've been unable to keep him from getting dehydrated without IV fluids. So that means we're still in the hospital for now. The docs are concerned at this point about him getting so skinny, so we're putting him back on TPN today. HOPEFULLY, not for long.
Monday, April 18, 2005 4:02 PM CDT
Not much great news to write about yet. Carter weighs less now than he did when we were admitted. We had the scope done Wednesday and it showed that he now has EE (esophageal eosinophilia) --an allergic reaction in his esophagus. We're trying to figure out what he's allergic to. The docs don't think that the EE could be causing so much vomitting, so still not sure exactly what is going on. The bowel looks good --no rejection, thank God. The docs put him back on continuous tube feedings to try to get some weight back on him, but he is dumping from them. Tube feedings have always affected him that way. Right now, he is unable to maintain things without IV fluids. Really hope that all this is short lived, and that a central line/TPN isn't in his future. We all know he doesn't do well with those either. So far, no vomitting today. Hope its a trend.
hugs, Nichole & Carter
Tuesday, April 12, 2005 9:19 PM CDT
sick!sick!sick! Well we made it this far, but the cootie-bugs won. We are in the hospital again. Carter has been having intermittent episodes of emisis for a little over a week now. It wasn't until yesterday when he was throwing up blood that the doctor admitted him. We don't know at this point what is going on yet. But they are all over it with tests and blood/lab draws, and even another scope to be done sometime tommorrow. Keep "The Man" in your prayers and i will post as often as possible to keep everyone up on currents. thanx and lub'yall.
Friday, March 25, 2005 9:55 AM CST
Carter celebrated birthday #4 last weekend! We went to the St. Patrick's Day Parade and then went over to Aunt Judy and Umiller's house to celebrate. He's at preschool right now. Trying to figure out how to keep him from eating too much Easter candy this weekend, because too much sugar still doesn't agree with his belly. I think the Easter bunny will bring him animal crackers or something a little less sweet. A little concerned that he's been losing a little weight lately. The docs are talking about starting him on growth hormone therapy. So hopefully that will help things. But still doing great besides that. Happy Easter everyone!!!!!
Tuesday, February 15, 2005 11:14 PM CST
This past weekend we were honored to share in a birthday celebration with a very special little friend. Actually, many are saying that she's my future daughter in law...lol. Such a sweet little butterfly our little friend is... I won't share her name as her adoption hasn't been finalized yet. But its fun to think that my Carterman is betrothed to such a little princess. They have had a lot in common so far... identical tummies, same birth place, same birth defect, same home hospital, same long wait for an organ at Pittsburgh, and even the same kind of living related transplant in Chicago. May God bless and strengthen the wonderful, loving family who has taken her in, and may Carterman and our friend share lots and lots more birthday cake together in the years to come!!!
By the way, speaking of Chicago, guess who's coming to town to speak at Grand Rounds here at CHKD on Thursday? DR. BENEDETTI!!! --our transplant surgeon/hero from UIC! We're so excited to catch up on everything. I'm sure Carter has grown a foot since last time we saw him last year.
Sending prayers of peace and comfort to the family in Chicago I had asked you to pray for. Our friend lost her fierce battle for life this afternoon. Such a strong little fighter she was... I know she's making one heck of an angel now. But please keep praying for the family to stay strong. Will be so glad when a perfect answer comes to the organ shortage. Please keep praying for that too.
Tuesday, February 1, 2005 10:00 PM CST
Asking for prayers tonight for a little friend in Illinois who is really struggling. She was awaiting transplant and has taken a bad turn. I know first hand that prayer is powerful and miracles do happen...
Things are just very uncertain right now, and it hurts to see this family going through so much. Just asking for strength for the family, and God's peace no matter what the outcome.
Thank you, Nichole & Carter
Monday, January 24, 2005 8:14 PM CST
Two years ago today, Carter received a gift from heaven. Although it wasn't a gift from someone who passed on to heaven, it was still a gift from heaven, in that, the opportunity came to us from God after many fervent prayers. I feel so thankful and blessed tonight as Carter sits here with us enjoying his anniversary celebration with chocolate chip cookies.
It is a bittersweet celebration as we reflect on those who endured similar circumstances who aren't here on Earth with us anymore. We're also thinking about our transplant buddies in the hospital tonight who are heavy on our hearts. Hopefully this year will bring them healing and joy.
We are thankful to have met so many angels on Earth these past few years, who have helped make things so much better for us --the doctors, the nurses, family and friends who have been there to lift us up. And we've learned so much from our internet friends, most of whom we've never even met, but who have been such a blessing in our lives. We love all of you!
HAPPY ANNIVERSARY CARTERMAN!!!! XOXOXOX
Sunday, January 2, 2005 2:57 PM CST
Our holidays, and especially our Make-A-Wish trip were soooo much fun!!!
Cameron's favorite part of our trip was Space Mountain and Thunder Mountain and Epcot. He's REALLY into space these days.
Carly's favorite part was the Magic Kingdom. She went to visit "her very own" castle and met Cinderella, Sleeping Beauty, Ariel, Jasmine, just to name a few. We went to the "Wishes" firework display and Carly told me "Mommy, this is my dream come true. I never want to leave Disney World." Looks like two kiddos got a wish granted in our family...lol. That's okay she deserved the trip too, after having to give up her Mommy during all those long hospital visits.
Carter also had a blast, of course. I was surprised at all the rides he was able to enjoy. Everything was so kid friendly. When they saw him, with his "magic" button on, everyone went out of their way to really roll out the red carpet. I can't tell you how much he loved Barney's part of Universal. And, yes, he got to meet Barney --three times! And BJ and Baby Bop too. Definately a dream come true. He got so excited the first time he saw Barney's show that I thought he was going to explode... made Mommy cry for joy. And best of all...hehe... he did spike a fever while we were gone, but he waited until we were on our way home to do it... Lol... Good boy, Carter.
Hehe... Christian probably had the least fun. He did not think it was cool to hang out in the stroller all day, and the rides pretty much freaked him out... not to mention that his two front teeth are coming in and they hurt! But thats okay he probably won't remember most of it anyway. He did enjoy the junk food we ate, and we have ten rolls of film to show him when he gets older..lol.
Papa's favorite part was the new magic set he bought from Universal Studios. He's been dazzling his patients at the Childrens Hospital with it, eversince he came home. Move on over Grandpa Robert. There's a new magician in town.
As far as my favorite part goes, the hot tub at the Give the Kids the World Resort where we stayed was pretty cool. Also loved the watermellon smash ice cream at the ice cream parlor at the resort. That place was soooo wonderful. My MOST favorite part was watching how excited my kids were getting, especially during the (three) parades that we saw.
...Well there's really just too much to mention. Lets just say that I cried when it was time to come home. We had such an awesome, awesome, awesome time, and we're so thankful to those wonderful folks at Make-A-Wish, Give Kids The World, and Disney and Universal. And to think that they help make kids wishes come true EVERYDAY!!! They are truly angels on Earth.
Happy New Year everyone!!!
Sunday, December 5, 2004 4:17 PM CST
We made it home from the hospital safe and sound Thursday. You'd never really know that he'd been admitted for a week. We have a very busy month planned. Thursday is (little brother) Christian's birthday. Bobby and I have also been selected to serve on a parent panel for CHKD's 15th Annual Bioethics Day on Thursday. We're supposed to discuss certain ethical decisions that affect physicians and families, and in Carter's case, how we've come about making those decisions. We've also been asked to talk with Chuck and Jenna on CHKD's Radiothon on Thursday. Thats always a fun event to raise money for the hospital, so we look forward to that. Then, the following week we're heading all the way to Florida on our Make-A-Wish trip! Watch out Barney, here we come. Should be awesome and memorable for all of us. I plan to take lots of pictures! Then, as soon as we come back, it will be time for Santa. Ho! Ho! Ho! Hope all of you are feeling the Christmas Spirit and are enjoying the blessings this wonderful season brings.
11/28 Welp, after eight WONDERFUL months, we're a little bummed that Carter has returned to his old stomping grounds this weekend. Its his first hospital admission in sooo long. He came up positive for a blood infection. He doesn't seem to feel too bad, however, so we're hoping for a short stay. We're still very thankful that he was home for Thanksgiving, at least, and that he's had such a great year. I hope you all had a great Turkey Day too.
11/10 Ok, time for Mom to brag about the boy! Your looking at Student of the Month for October!!! Little guy is still continually amazing me these days. We went to Grandpa Dave's wedding last week, and you should have seen the dancing he did. Never knew he had some of those moves...lol.
10/2 Oh, its been way too long since I've posted an update. But its been so busy around here, getting Carter on the school bus, getting to doctors appointments, getting two others to school, getting physical therapy, getting to work, getting homework done, lunches made etc., etc.. But things finally feel normal again, and that hasn't been the case for a very long time. Carter is having fun at school. They made homemade applesauce on Friday, which he really enjoyed. That is one of his "good" foods. So all is well. Normal, busy, happy and well.
8/8 Wow can't believe its almost school time! Carly is already for Pre-k this year, and we're waiting to hear about getting Carter in school too! Not too much excitement going on, which is good. We've visited Aunt Anne, Crysten and her new hubby Mike this weekend, Aunt Nette and Papa Robert. Today, Papa Dave visited and brought all the kids some tshirts from his trip to Aspen. He got to shake Pres. Clinton's hand while he was there! Right now everyone is sitting around playing Monopoly Jr. And Carter is doing super dee duper!
We visited with some Make A Wish volunteers the other night. They asked Carter if he could wish for anything in the whole wide world, what would it be? He said, "Barney." Big surprise...haha. So we'll see what happens.
We took Christian to the doctor last week. Everyone was quite concerned about his slow weight gain earlier in the summer, but he is definately fattening up a bit, so things are good with that too. Just love entering these happy posts for a change!!!!
7/17 Everything here is still just fine and dandy. Carter has been spending a lot of time indoors lately. Virginia summers are SOOO hot and humid, and we don't want him getting dehyrated. The kids enjoyed vacation bible school this week. We've also been spending time visiting friends and family lately and NOT visiting the hospital. Yay!
7/2 Sorry haven't updated in a while, but all is still going well. Three months with NO hospital admissions. Yippee! Grandma is coming to town this weekend, so we're planning on having some Fourth of July fun. Kind of bummed tonight though... just heard that the Bay water by our home has high bacterial levels and they're discouraging swimming. Ugh! i can't believe that! We've enjoyed the Bay every summer of our lives here. Guess i can't take any chances now with Carter going in for a swim. Its just so sad.
Would like everyone to say a little prayer tonight for a family in Florida. One of our transplant buddies lost his battle last night. My heart breaks for them. Reassuring to know that he's gotten his angel wings and will be looking down on us now. Makes me so thankful for each day we're given.
6/13 Wow! I can't believe that June is halfway gone. We had a super time on our vacation to Yorktown last weekend. The kids went fishing (Carter too). We were totally spoiled. I felt like we ate the whole time...lol. We stayed in a hotel with a great view of the river, went to a picnic and out to dinner, and we went swimming in the pool. The kids had a great time playing with the other Edmarc family, befriending all the members of the Rotary club, and even adopted a new grandma. The Rotarians really went out of their way to take care of us. It was great.
Carter continues to behave very nicely, medically that is, lol. He beat another record ... two months home with no hospital admissions in sight. Hurrah!
5/29 I have four kids and none of them (except Carter) have EVER visited the Emergency Room. Besides his countless trips to the ER for gut and line infections, Carter has already made TWO trips to the ER for normal kid stuff! Don't know whats up with this kid and his obsession with that hospital. But this morning, he decided to shove a tiny game piece up his nose! I tried getting it out, but he got to crying and that made it go up farther! Thankfully, the docs at CHKD are very well prepared for this kind of thing, and our ER visit was short and sweet.
Carter also met another milestone today. He went #2 in the potty --yippee!!!
5/28 I haven't posted much, but all is well here. Carter is busy playing with his sister, still watching Barney. He likes to play outside with his physical therapist, Ms. Emily. And likes hanging out with his his school teacher Ms. Christy, too. Summer is already here --It is already hot and humid, so we're trying hard to keep Carter hydrated. His labs were a little off last week, so we're rechecking them again tomorrow... probably just too much heat.
5/16 I'm so excited this morning. One of Carter's special nurses was nominated (by us) in a special that our local paper was running to honor nurses. And guess what? She won! We're so tickled pink, because we feel she really deserves it for all she's done! I've included a link below, so you can read about her.
5/14 We took Carter to the hospital today to have his labs drawn, and they got them first try... hurray! One of our home health nurses also successfully drew labs from him last week, so I guess his veins are healing up from his back to back admissions earlier in the year. Maybe we won't have to worry about a port or a line or anything... hopefully for a long, long time.
We've been enjoying the warm May weather. Cousin Toni from Oklahoma came to visit last week. Kylie is getting so big and more and more adorable.
5/4 Bobby and I went and had a long talk with Carter's surgeon today. It turns out that putting a port in, isn't going to be the ideal solution for our blood drawal problems afterall. After doing a study of his veins, the docs have discovered that he still has only one vein left to work with, and putting a port there, will be difficult if not impossible. Plus it would compromise the vein and he would be left with no more access if he needed it in the future. So we're going to have to find a better way to get blood from him for now. I think it will mean going to the hospital every week for blood draws. Putting a port in is a last resort option at this point.
5/1 Well, Carter spent the entire month of April out of the hospital! Yay! That's only the third time he's spent a whole month like that at home. Hopefully he'll start breaking even longer records. Carter is really taking off with his speech lately. His phrases are getting longer and longer. He told his sister the other day... "I'm not talking to you Carly. I'm talking to Mommy!" Quite a mouthful for someone so short.
We want to say happy transplant anniversary to Carter's transplant buddy Makenzie! She received her transplant a year ago and is doing great. Such miracle kids we've met these past few years.
Carter will need to have a port placed within the next few weeks, so hopefully getting the blood we need for labs will be a lot easier for us. We go in for a study on Monday to try and figure out where they will be able to put one.
...One more thing. Nurses week is coming up. God bless all of you nurses who have taken care of Carterman. And make sure you hug your favorite nurses. They deserve it!
4/17 We have been outpatient all month so far! yay. We are having some tough times with blood draws. Sticking Carter's little toes and fingers isn't giving us the amount of blood we need for labs. And his veins are so scarred up, its really difficult to draw the blood out that way these days. The docs are deciding whether we should have a port placed in his chest...ugh.
But besides that, Carter has been very well. He is resting tonight, exhausted from an afternoon at Hunt Club Farm. The kids had an egg hunt and visit with the Easter Bunny, and they went on a hay ride and fed chickens. The weather was close to 80 and perfect.
Easter was great too. We tried so hard to get the Easter baskets up high and out of reach, but somehow Carter kept finding more and more candy to chomp on. Oh well, we have to let him live a little every once in a while, even if it means changing a few more diapers. The kids spent Easter afternoon playing with Molly and Oakley and visiting Papa and Nana Dexter.
A year ago we were just getting home from Chicago. So happy we were at home this Easter too.
3/31 Carter came home on Monday. Tonight he is dancing around to his Sesame Street video with Carly. So thankful that this virus was relatively short lived for us. There's a little boy down in Florida (whose mom I tlk with online). He's having much more trouble with the same virus.
3/26 We made it home Sunday from the hospital. Our little man was fine for a couple of days, but then started dumping out rivers of poopie. Needless to say, my first thoughts were that we might be going through a rejection process again. But it turns out we're dealing with a nasty bug called Rotavirus. It is very common gastrointestinal virus that most kids get. But needless to say, its hitting our little man a lot harder than it would a typical kid. They're taking good care of him at the hospital and keeping him well hydrated. Hopefully this won't last too long.
3/21 Well, I always heard of the "terrible twos," but seems like the threes aren't starting out too great. We were all set to celebrate Carter's birthday Friday night, and he decided he'd rather celebrate with his girlfriends up on the seventh floor. He was spiking 105 temps, but last night and today has done much better. Thank goodness. And really it isnt so bad sharing cake with the nurses, as they have become very good friends. And we're always thankful for happy birthdays, regardless if they're celebrated a couple days late and no matter where they're spent.
3/13 The St. Patty's Day Parade was today and lots of green beer was had in Ocean View. (Bobby picked up lots of colorful folk in the cab tonight.) We didn't make it to the parade this morning though. Instead, we went to an "Unsung Heroes" luncheon that Edmarc sponsored. It was to honor the siblings of our sick kids, and to show our appreciation for all they put up with and endure. Cameron has had to make a lot of sacrifices the past few years, (no more t-ball for instance) so i hope today made him feel special. He received a little certificate and I put a little keepsake book together with pics of him and Carter. Bobby gave a very sweet speech (lots of wet eyes). It was a nice event.
3/8 I tried to give you all an update the other day, but apparently things didn't go through for some reason. Not much new to tell, but as you know, "no news is good news" with this kiddo. Carter had his first "class" last week. He has a teacher coming out once a week now. We might be starting him in a special needs preschool in the Fall of he stays well. Life without the central line is great so far. ;-)
3/31 Carter came home on Monday. Tonight he is dancing around to his Sesame Street video with Carly. So thankful that this virus was relatively short lived for us. There's a little boy down in Florida (whose mom I tlk with online). He's having much more trouble with the same virus.
3/26 We made it home Sunday from the hospital. Our little man was fine for a couple of days, but then started dumping out rivers of poopie. Needless to say, my first thoughts were that we might be going through a rejection process again. But it turns out we're dealing with a nasty bug called Rotavirus. It is very common gastrointestinal virus that most kids get. But needless to say, its hitting our little man a lot harder than it would a typical kid. They're taking good care of him at the hospital and keeping him well hydrated. Hopefully this won't last too long.
3/21 Well, I always heard of the "terrible twos," but seems like the threes aren't starting out too great. We were all set to celebrate Carter's birthday Friday night, and he decided he'd rather celebrate with his girlfriends up on the seventh floor. He was spiking 105 temps, but last night and today has done much better. Thank goodness. And really it isnt so bad sharing cake with the nurses, as they have become very good friends. And we're always thankful for happy birthdays, regardless if they're celebrated a couple days late and no matter where they're spent.
3/13 The St. Patty's Day Parade was today and lots of green beer was had in Ocean View. (Bobby picked up lots of colorful folk in the cab tonight.) We didn't make it to the parade this morning though. Instead, we went to an "Unsung Heroes" luncheon that Edmarc sponsored. It was to honor the siblings of our sick kids, and to show our appreciation for all they put up with and endure. Cameron has had to make a lot of sacrifices the past few years, (no more t-ball for instance) so i hope today made him feel special. He received a little certificate and I put a little keepsake book together with pics of him and Carter. Bobby gave a very sweet speech (lots of wet eyes). It was a nice event.
3/8 I tried to give you all an update the other day, but apparently things didn't go through for some reason. Not much new to tell, but as you know, "no news is good news" with this kiddo. Carter had his first "class" last week. He has a teacher coming out once a week now. We might be starting him in a special needs preschool in the Fall of he stays well. Life without the central line is great so far. ;-)
2/25 Carter made it home from CHKD yesterday, and once again we are free from the centralline....yay!!! ...He'll be enjoying bubble baths again. Christian started rolling over a few weeks ago. He's already trying to catch up to his brothers and sister. Cameron had a school play last night and is looking forward to his birthday, and Carly girl spent the day painting... won't go into the fact that she got some on the window...lol.
2/14 Happy Valentine's Day! Carter "is in the joint" again. He needs IV antibiotics because he had another line infection. They took the line out though so hopefully we won't have the problem again anytime soon (yay!). Once he finishes his course of antibiotics, hopefully he'll get a long break from the hospital.
1/27 Sorry it has taken soooo long for me to update everyone. On 12/9, our sweet little Christian was born. He has kept us really busy. Then, I got an infection and was sick for quite a while. We had a nice Christmas, and then Carter got another line infection, but it wasn't too bad. Now I'm in school and don't have much computer time. Needless to say it has been busy and crazy as usual.... But, I want to tell everyone that we celebrated a very special day on Saturday. Carter celebrated his first transplant anniversary!!! I'm so thankful that he was able to receive such a miracle. He has come so far. He no longer needs IV fluids and is still eating us out of house and home. We've had a few setbacks this past year, but it has been nothing compared to those scary pre-transplant days. We feel very blessed.
12/5 Carter had his scope and biopsies /this morning, and it looks like we caught a break. Things look good! So it doesn't look like we'll have to rush off to Chicago right away...yay! While, Carter was having his scope done, Mom was also seeing her doc... 3 cms. dilated but no contractions. The whole family is so excited about baby brother's arrival...we can't wait.
12/1 We managed to stay out of the hospital for the holiday weekend...yay! Grandma Smith came down wth Aunt Katie and we had dinner at Aunt Judy's house. We had so much food and it was sooo good. Carter has been eating turkey every day. It is one of his favorites. Carter's baby brother is due later this week, so we will have a new addition to our family soon. We're very excited...still deciding on a name...hehe.
We're also trying hard to avoid another trip to Chicago. Carter's scope and biopsies from the 21st showed mild rejection again. Thankfully, CHKD was able to give Carter several outpatient steroid treatments last week. We'll have another scope done soon to figure out if that worked, and whether or not we have to return to Chicago. Needless to say, now would not be great timing.
2/25 Carter made it home from CHKD yesterday, and once again we are free from the centralline....yay!!! ...He'll be enjoying bubble baths again. Christian started rolling over a few weeks ago. He's already trying to catch up to his brothers and sister. Cameron had a school play last night and is looking forward to his birthday, and Carly girl spent the day painting... won't go into the fact that she got some on the window...lol.
2/14 Happy Valentine's Day! Carter "is in the joint" again. He needs IV antibiotics because he had another line infection. They took the line out though so hopefully we won't have the problem again anytime soon (yay!). Once he finishes his course of antibiotics, hopefully he'll get a long break from the hospital.
1/27 Sorry it has taken soooo long for me to update everyone. On 12/9, our sweet little Christian was born. He has kept us really busy. Then, I got an infection and was sick for quite a while. We had a nice Christmas, and then Carter got another line infection, but it wasn't too bad. Now I'm in school and don't have much computer time. Needless to say it has been busy and crazy as usual.... But, I want to tell everyone that we celebrated a very special day on Saturday. Carter celebrated his first transplant anniversary!!! I'm so thankful that he was able to receive such a miracle. He has come so far. He no longer needs IV fluids and is still eating us out of house and home. We've had a few setbacks this past year, but it has been nothing compared to those scary pre-transplant days. We feel very blessed.
12/5 Carter had his scope and biopsies /this morning, and it looks like we caught a break. Things look good! So it doesn't look like we'll have to rush off to Chicago right away...yay! While, Carter was having his scope done, Mom was also seeing her doc... 3 cms. dilated but no contractions. The whole family is so excited about baby brother's arrival...we can't wait.
12/1 We managed to stay out of the hospital for the holiday weekend...yay! Grandma Smith came down wth Aunt Katie and we had dinner at Aunt Judy's house. We had so much food and it was sooo good. Carter has been eating turkey every day. It is one of his favorites. Carter's baby brother is due later this week, so we will have a new addition to our family soon. We're very excited...still deciding on a name...hehe.
We're also trying hard to avoid another trip to Chicago. Carter's scope and biopsies from the 21st showed mild rejection again. Thankfully, CHKD was able to give Carter several outpatient steroid treatments last week. We'll have another scope done soon to figure out if that worked, and whether or not we have to return to Chicago. Needless to say, now would not be great timing.
11/22 After a week in "Club Med" (the hospital) we finally got sprung. Carter hasn't had a fever since last Thursday when we went in. He's been playful and busy flirting with the nurses and with baby "Bwina" across the hall. Regardless of all the good news however, the scope he had of his bowel this morning looks very concerning. He's on a new rejection medication, so we'll wait and see what the docs up in Chicago think and see what the biopsies that were taken look like.
We're praying with Carter's little brother coming soon and with Turkey Day fast approaching that this is really nothing.
Carter also is getting his growth issues addressed. They've been evaluating him and are deciding whether or not to give him some growth hormone therapy to give him a boost.
11/14 Carter had to meet his monthly quota (he still seems to need a hospital admission once a month)... He was admitted yesterday with a low grade temp. He had another low temp earlier in the week. So far, it looks like we have another line infection, but he doesn't look bad and isn't acting sick, so that's good.
Some good has come out of our visit. We got to hook up with Chuck and Jenna on the radiothon to help raise money for the hospital. We gave them an update on how far Carter has come this year. We also finally got to meet another little shortgut baby who has been in the NICU all year. She is very cute. We're praying she won't need a transplant too.
11/5 Carter had a physical therapy evaluation today. It was decided he'll need services once a week for now. He's very active and playful, but still a little cautious when it comes to climbing, running and jumping. But at the rate he's going, I know he'll catch up soon.
Plans have also been made to transition him out of the Early Interventions Program (the program that provides his therapies) into the Norfolk Public Schools system. We had our first meeting yesterday at Cameron's elementary school. The school's team would like to see him start a special needs preschool next school year, but with his compromised immune system, we're not sure if he's ready for that.
Besides that not much is going on with "the man". He did spend the night at CHKD last week. He needed a special infusion and to be monitored overnight, but you never would have known there was anything wrong with him. We've been looking at lots of Barney books, enjoying the Indian summer and are anxiously awaiting the new addition to the family.
10/29/03 Today was fun. We picked Cameron up from school early and went out to lunch to celebrate Carly's birthday. The only not-so fun part was trying to calm Carter from screaming his head off while he waited for his food. (I swear he had just eaten breakfast.) He has become an impatient, bottomless pit when it comes to food lately. I swear he eats as much as a grown up. He'll eat for hours until we eventually have to cut him off. I know, with all he's been through, I should be happy about this and not complaining. One doc said maybe he's always hungry because his food is moving through his system so fast that he's not getting much from it. Who knows. He's come so far with his eating. Can't wait to see that piggy appetite pay off. Would love to see him get a little taller and fatter... All in time, i guess.
10/24/03 We're still doing fine. We went to see Dr. Tsou yesterday, and I'm glad to report that Carter has gained a little weight since coming home. His labs also look really good.
10/16/03 We're finally home!!!!! We made it back safe and sound on Monday. Carter has been having a very good week. We've been going on lots of walks with Miss Carly and reading lots of books. The weather has been awesome.
10/9/03 Carter got the second of his TNF treatments this afternoon (found out it is the same thing as Remicaid). Don't know if that helped him a lot, or if it was the steroid treatments, but Carter's bowel is looking a lot better. (Prayers helped a lot too, I know.) We are planning on heading back home this weekend. This is good, because Miss Carly is having Mommy withdrawals, and Mommy is having withdrawals too, being away from the other kids (including Bobby...heehee) Carter is still having lots and lots of loose stools, so we'll have to go back home with a central line for a while, but its nothing we haven't had to deal before, and we're just happy to be heading back.
10/01/03 Things seem to be getting better quickly this week. Prayers are definately working. The new treatment they gave on Saturday (something called TNF), along with stopping his gtube feedings, seems to have helped. If things continue to get better, we may be able to go back home next week sometime.
9/28/03 Well, we're still in Chicago, and the docs are still trying to figure out the cause of what went wrong with Carter. They started him on a new treatment last night, and his scope from Friday looked better, so hopefully we're on the right track.
9/23/03 Carter had a central line placed yesterday (one of those icky lines that caused all his infections before.) And he's back on TPN again ( the icky IV nutrition that screws up his liver.) But hopefully he won't be on them for long. The transplant surgeon does not think that Carter is in rejection at this point. Now we just have to figure out what it is for sure.
9/20/03 Sorry it has taken so long to post.... the week has been crazy. Carter escaped the hurricane by flying to Chicago on Tuesday. Since I last posted, Carter spent several days at CHKD. The doctors couldn't figure out what was wrong with him, so they sent us up here to Chicago. Well, he has everyone here stumped too. He is showing some signs of rejection, but it doesn't seem like full blown rejection, so they're not certain whether he'll need strong anti-rejection drugs or not yet. They also found he had a bacterial intestinal infection, but they treated him for that and he is now negative for it, but his intestine still is just not working. We will be here in Chicago for a little while getting more tests done, and trying to get things working again. I will try hard to get to a computer, so I can keep everyone posted.
9/12/03 This week has been bumpy. The pastor and church have been praying for us and the devil must know it...lol. Carter hasn't slept soundly for two nights (so neither have Momma and Papa). We thought his cold (that we posted about before) had gone away, but early in the week, Carter's temps came back, along with a whole lot of loose diapers. Also, ealy in the week, our GI doc called to say that his biopsies from last week were showing some mild rejection of his organ. So we went in for treatments on Tuesday and Wednesday to stop the rejection. Since then, the fevers seem to have stopped, but the major poops continue, and our little boy is just NOT his happy self this week. He seems pretty miserable at times. So we'll be calling the docs again today. ...Will keep everyone posted.
8/30/03 Carter spent the day in the ER yesterday. He woke up with a temp that got up to 102, and he has a croupy cough. He also had some bloody diapers this week,which really scared the bejeebers out of me. But the docs think that maybe he had a tummy bug that irritated his gut a little bit. They ran tests yesterday, and we are scheduled for more tests first thing Tuesday morning to double check and make sure everything is ok. Besides that, Carter is acting playful and healthy. He spent the day, today, coloring with Carly and enjoyed going on a walk to the Family Dollar.
8/23/03 Things are still pretty busy around here. Sorry we haven't posted in so long, but it has been an uneventful month as far as Carter goes (yay!!!). Carter has been visiting with mommy at school a few days a week, and has been having fun (for the most part) playing with the other babies. Carly is getting ready to go back to preschool for the Fall and she is so excited! Cameron continues to enjoy the rest of his summer, and has lots of girls in his classroom chasing him (yikes!). The new job didn't work out so well for Bobby, but he's really getting into the rescue squad thing, and has decided to get his EMT certification this Fall. So things are good. It is so nice to post about normal family things for a change, and not post about our latest line infection!!! :-)
8/4/03 We've been busy working. (We made it home safely from Chicago, needless to say.) We're back to changing lots of diapers, but it is nothing compared to our pretransplant days. The house is busy (and, I must admit, a bit messy) these days. Bobby is looking forward to starting a new job in a few weeks. Cameron will be back to school before we know it (and wearing a school uniform for the first time this year). Carter and Carly have been spending their days running errands with Papa. And, of course, watching Barney videos.
7/23/03 Carter is sitting up in his high chair eating chicken nuggets and carrots. He's been sitting up playing with puzzles (chewing on them). And was dancing to the Wiggles earlier. We'll probably get discharged in a couple more days. :-)
7/20/03 Carter is doing very well. He had a poopie yesterday morning (first one in months). So it looks like everything is working. Even though his central line gave us nightmares, I actually miss it right now, because he has to get poked a lot and doesn't do very well with IVs. He's still a little too sore to get out of bed, but he's watching Scooby Doo, and is a little jabbermouth this morning. He's definately coming around. So all is well. :-)
7/18/03 Well, its been a busy week to say the least. We headed for Chicago on Wednesday night (driving took 21 hours)so that Carter could get his ostomy reversal this morning. (That means no more poopie pouch.) We got here safe and sound. They found us a room at a local Ronald mcDonald House and its really nice. Surgery went very smoothly. Carter has been resting peacefully all day with the help of pain meds. They expect a swift recovery, and so far everything is going great!
7/6/03 Wow, we've had such a fun weekend! I hope everyone else enjoyed their holiday too. Carter went for his first swim in a pool. Surprisingly, he loved it. We ate some of Aunt Anne's yummy barbeque (Carter especially loved the seafood salad.) Then yesterday, we had some sandy, wet fun at the beach. I'll post a pic as soon as I get them back.
6/21/03 Carter is doing better than ever. So far we've managed to avoid an overnight admission to CHKD this month, which is a first. (We still try to keep up with our friends there though.) Carter has also gone three weeks without a central line. This is such a tremendous achievement, and we are very thrilled!!!
6/5/03 I believe my son has grown impatient with his doctors. They have tried so hard over the past month or so to wean him off of his fluids so that he can get rid of his central line. Well apparently, they were moving too slow for his liking. He decided tonight to pull his line out himself! Dr. C says we'll watch him for the next few days and see how things go. Perhaps, he can at least get rid of it for a little while, which will be a wonderful first!
5/23 Carter finally got back home tonight. He still has his line for now, but he's getting closer and closer to not needing it anymore, so we're happy.
5/14 Carter is STILL in the hospital. Things are taking a while this time because they're trying to get his central line out once and for all. Right now things are still going a little rough, but it will be a great day when it finally does happen!
5/04 Carter is back at CHKD visiting all his girlfriends this weekend. He ran a very lowgrade temp the other night. He's been fine eversince, but everyone has to be on the safe side and try to figure things out. Hopefully this stay will be short and sweet.
4/28 Not much new going on since we've come home, but no news is good news with this kiddo. We sure are enjoying this nice Spring weather and are still catching up with our family and friends who we haven't seen in so long. Carter is having lots of fun giggling with Carly and getting into Cameron's toys. :-)
4/21 Well, the choo choo train carried us back to Ol' Virginny last night, and it is soooo good to be back!!!
4/10 Sorry to worry everyone.. I just couldn't make it to a computer to put in an update. It has been too cold to walk to the library, and my laptop is on the fritz, but wanted to let everyone know that Carter is back out of the hospital and doing much better. He's eating and drinking more than ever! Plans are being made for us to go home to Virginia next week. We sure can't wait!
3/28 I always hate to post bad news, but Carter is pretty sick tonight. He started with his shivers and his moaning (like he always does when spiking a temp) when we were getting blood drawn this morning. It was 103, so they went ahead and admitted him. He was doing a little better during the day today, but could'nt keep any food down. Then tonight, he spiked another temp. The transplant doctors are pretty concerned. His white blood cell count is low, and there's talk of taking out his central line in the morning. Trouble is, I don't know where they'll be able to put it back in because of his line access issues, but God will make a way. He always does.
3/24 They set Carterman free from the hospital on his birthday. He continues to do super. Today he is two months post transplant. One more month and we get to go home to Virginia! We really had a lot of fun when Papa, Carly and Cameron came up last week. We went to downtown Chicago and saw all the tall buildings (and all the protesters...lol). We also went to the Children's Museum, and everyone had a ball. Can't wait to get Carter back with his brother and sister for good. He's getting QUITE rotten with all this one-on-one attention from his Mommy...lol. I guess it also just comes from being two.
3/17 Happy St. Patrick's Day!!! We've had a bittersweet weekend. Papa, Cameron and Carly came to Chicago to see us this weekend. It was a wonderful surprise. Then, we went to see Barney live on Saturday. Carter had bunches of fun. He even made a new friend at the show who he stole Fritos from....hehe.
Then, our fun was dampened. Dr. John called Saturday night when we got home to tell us that Carter needed to be admitted. We've been in the hospital eversince. He's growing bugs in his line again, but he doesn't have fevers or anything, so I'm hoping we won't have to stay here too long!
3/4 Carter was priviledged enough to have a beautiful article written about him in today's newspaper back home. He continues to do super. We were discharged from the hospital and are staying at the transplant apartment now, and if all goes well, we can go home to Virginia in another month or so.
2/22 Carter is TPN free!!! That means he doesn't need his IV nutrition anymore. He's getting enough through his tummy tube and through eating. He'll still have to keep his line for a while for fluids, but we're making lots of progress so far. He's up to 60 ccs per hour on his tube feedings. The most he could handle before transplant was 11 ccs. per hour. They're talking about discharging us to the apartment on Wednesday.
2/17 Carter underwent his skin graft surgery this morning. They took a portion of skin from his left leg and in order to close his tummy wound. Needless to say, he's a little bit sore, but not too bad. He was tapping his foot and clapping to Barney...I think thats a good sign.
2/12 Can't believe this boy...his belly is open the size of a football, but he got up on his feet and was dancing tonight!!! God is so good, and is definately our strength. We look so forward to seeing our friends back home tomorrow at CHKD (even if its only through a TV screen). They're setting up a teleconference... so exciting! Its been a great couple of weeks and a great day. Hopefully things will just stay that way for a while.
January's Journal
1/30 Sorry its taken so long to update everyone... We had our transplant. On Friday, January 24th, Carter got 5 feet of intestines from his mommy's tummy
:-) Carter continues to be such a trooper. He is doing really great. So far things, could'nt be better. He is eating, laughing, playing, peek-a-boo, and, of course, dancing to Barney! Ours tummies are still a little sore, especially Carter's, but we keep doing better everyday.
1/18 As most of you know, Carter is planning to recieve his gift of life on Friday, January 24th. He will recieve it via living donor transplant at the University of Illinois Medical Center in Chicago, with his mommy as the donor. We're leaving in the morning, and we'll keep everyone posted as much as we can. I just have to find internet access up there. I guess they have computers in Chicago too. ;-)
1/14 Carter FINALLY got to come home from the hospital today. We have a gazillion meds to give, but its all worth it to have him home. ...We're still working on our trip to Chicago. Mommy gave eight vials of blood today to see if our tissues are a compatible match. PLEASE keep praying! Those prayers have really been working wonders lately!!!
1/7 Happy New Year everyone!!! So far we've been busy this year. Papa has gone back to school and Mommy has started running rescue duties. Cameron has gone back to school as well, and all the kids are enjoying their wonderful Christmas clothes and toys.
We've been working on something new.... The University of Illinois at Chicago has started performing living donor small bowel transplants. This is where a living person (such as a mom or dad) can give a portion of small intestine to the person needing transplant. It has been a hard struggle, so far, convincing our state medicaid system that Carter needs this transplant. But we've been working hard with the help of the good folks at CHKD and the transplant teams in Pittsburgh and Chicago. We had a big hearing this past Friday, and we're expecting to hear back from medicaid very soon as to whether or not they'll fund the transplant. Please keep us in prayer.
Unfortunately on Friday afternoon, Carter became sick again and spent the weekend in the hospital. But thanks to the right antibiotics (and lots of TLC), he has already bounced back and should be coming home tomorrow. Will keep everyone posted as we hear more!!!
Carter's timeline: November & December 2002
12/26 I've posted new pics of Carter finding his Barney toys Christmas morning.
12/24 Hello everyone. Just wanted to write and let everyone know how thankful we are this Christmas. Carter looks great at the moment and we're planning to spend the holiday outpatient this year!!!! Just got back from the doctor yesterday and found out his liver numbers are getting better finally --what a great Christmas gift! My thanks go out to all of you who have made this Christmas so special for us. We really feel so blessed to have so much caring support from friends, family and the community. One positive thing Carter's illness has brought into our lives, is the opportunity to befriend so many wonderful folks who we wouldn't have otherwise met. Luv & prayers to all of you and happy holidays!!!
12/15 We've had a fun weekend. We went to the hospice Christmas party /yesterday and saw Santa. A picture can be found in the photos. Today, the Christmas Trolley came to our apartment. Santa came with about 15 carollers. It was a really nice memory. Its not everyday we're serenaded.
12/11 Carter got to come back home last night. The TPA worked on the blood clot, but Carter's doc called just as we got in and said we had to come back in for blood work. Apparently, bugs are still growing in the line. We'll see how long we can keep him home. Hopefully we'll make it at least until Saturday. We really want to go see Santa!!!
12/8 We're still in the hospital, but the fevers are gone and Carterman is happy to be back to watching Barney again. His line is giving us some grief. They discovered a new clot forming near his line, so they are trying hard to get rid of it with TPA. Carter got to be a radio star today! He didn't get to be on the air himself because of contact precautions, but Mommy, Papa, Cameron and Carly got to share his story with everyone. Hopefully it helped raise lots of money for CHKD!!!
12/04 We're sick again!!!! Carter's on his way to the Er with 104 temp. At least we had a nice break for a while. Will keep ya posted!!!
12/02 Carter took a brief trip to the ER yesterday. He just had to have some TPA pushed into his line in order to unclog it. He's doing fine and is enjoying using his new words: "oooh dirty." lol
11/28 We had a wonderful Thankgiving at Nana & Papa Dexter's house. Carter ate lots of green beans,stuffing and a little of the other good stuff. Unfortunately, it goes right through him and we're busy changing diapers tonight...hehe. It was wonderful having him home for Thanksgiving this year. We are very thankful. Happy Turkey Day!
11/25 Carter made it home on Friday. We had a very laid back weekend. Wanted to go to the parade, but it was soooo cold. Carter has had fun trying new foods. I think he's going to love Mexican like his Mommy. We're looking forward to him chowing down on Thursday. It will be his first Turkey Day at home! He's ending his course of antibiotics today so we're praying he'll stay well! Happy Thankgiving!!!
11/21 Carter's line placement was smooth sailing! Yay!!! He'll probably be ready to come home tomorrow! ("Dr. Dan is the man!!!!" ..lol)
11/20 Venography confirmed the worst the other day. Carter is clotted off just about everywhere. We're waiting for Thursday to try to get his line back into his jugular vein. Pittsburgh said we may need to go to Boston Children's Hospital soon, where they specialize in clotted off lines and have expertise in placing lines in unconventional places.
11/16 Well, Carter's new record to beat is 24 days home. He was admitted yesterday after he managed to pull his central line out of his chest. They tried for three and a half hours to put it back in yesterday afternoon with no success. He will be undergoing testing all weekend to see where to place the new line. Turns out his lack of line access is a much bigger issue than we thought. He appears to have formed many more blood clots. Please keep him in your prayers! (I know you will). God Bless!
Carter's timeline up to 11/13/02
3/01 Carter was born with the birth defect gastroschisis (where the intestines grow on the outside of the body). Surgeons discovered that an antenatal volvulous had stopped blood flow to the small intestine, destroying most of the tissue there. He also lost his ileum, ileocecal valve and part of the large intestine. After removing the dead tissue, his surgeon had a tricky job of resecting the rest of his large intestine to the tiny bit of small intestine he had left. He compared it to sewing your pinky finger to your thigh.
6/01 Carter did better than expected up to this point. He was doing a great job of tolerating more and more feedings, until he started throwing up green bile. His surgeon went in and found a malrotated (twisted)portion of bowel. Thank God this was easily corrected without anymore cutting. The surgeon also placed a gtube (which replaced the ngtube in his nose). It was a more permanent and more managable way of helping Carter get (what little)formula he could tolerate.
8/01 Carter comes home for the first time! Unfortunately, he spiked a fever that very same night and had to return to the hospital for a couple more weeks before really coming home.
10/31 Carter couldn't leave his hospital room because he had a temp this Halloween, but Carly and Cameron passed out treats to the nurses.
9/01-11/01 Carter had a rough fall. He kept getting recurrent line infections and also developed thrombosis (blood clots) in his veins where his catheters were located. These central venous catheters are necessary to provide Carter's intravenous nutrition. He would starve without it. Unfortunately, they are a foreign body, and therefore highly succeptible to infection --especially in Carter's case!!!
Doctors say that because Carter's gut is so short and doesn't work so well, that he harbors abnormal bacteria. Sometimes these bacteria translocate through the very vascular wall of the intestine into the blood stream, and often into Carter's central venous line.
Thanksgiving 01
Dinner at Shelly's was nice with all the family from out of town, but we missed having Carterman there.
12/01 Doctors decide after all the infections, that its time to take surgical intervention. They performed the Bianchi procedure where they lengthened and tapered Carter's bowel in hopes that by increasing the area of bowel, it could function better.
12/25/01
Santa brought Carter a whole box of toys! Mommy brought him some too. One of the docs said it looked like Toys R Us in his hospital room...lol. Cameron & Carly got new bikes.
It was a very special Christmas. Everyone poured out so much love on our family. The Christmas Spirit filled the hospital and our hearts.
1/02
Carter rang in the new year with Ms. Denise and the rest of the night crew on 7C. There's a great view of the fire works from the windows up there!
2/02 Carter finally gets to come home after a four month hospital stay. He had a hard time getting used to his real home again. He loves his mommies at CHKD so much!
3/02 You guessed it...more line infections. Carter spent his first bday at the hospital. He had lots and lots of visitors and nibbled on a tiny bit of icing. Shhh! Don't tell his doctors.
4/02 A busy, bittersweet month for Carter. He became the sickest he'd ever been and ended up in on the intensive care unit. One doc thought he was a gonner. It really scared Mommy!!!
But he pulled right on through, and at the end of the month, Carter took his first airplane ride! The docs at Pittsburgh said that CHKD was doing everything right, and all they could do was list Carter for a small bowel transplant. They also started him on some new meds that kept him from throwing up so much. They also said Carter can eat! After his transplant, he'll need to know how.
Summer 02
Carter becomes infatuated with a big purple dinosaur, and, you guessed it... more line infections... Carter's liver starts showing the first signs of damage after the April PICU stay. (Some kids with Carter's condition end up needing a liver and a small bowel transplant. Sepsis, antibiotics, and long term TPN/IV nutrition all start to take their toll on the liver after a while).
Carter got to spend a lot of time with Papa this summer. They like to watch cartoons together, and Carter practiced burping like Papa ...hehe.
9/02
Another bittersweet month... Carter had tons of fun taking a little trip with his family. He went to the beach and even stuck his toes in a jacuzzi.
But Carter also got really sick again this month...even sicker than in April. He had the worst septic shock ever with a temp up to 107. He ended up on the ventilator in ICU for several days. But God still has plans in store for Carter, and wouldnt let him go back to heaven just yet! After all, he hasn't watched all the episodes of Barney yet!
10/02
Mommy and Carter spend more time together now since she quit her job. Carter got to be home for Halloween this year (but we still had to go give treats to his "other mommies").
11/02
Carter has spent the longest stretch of time home ever --22 days and counting! Yay Carter! Two of Carter's buddies also got their transplants. They'd been waiting SOOOO long. Such good news to share this month!
Tuesday, November 12, 2002 at 02:26 PM (CST)
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