History

Saturday, December 4, 2010 4:13 PM CST

Oh, our Ellis, how we miss you.

Your little brother Finn grows bigger and stronger every day and we know you would be so proud of him.

Oh, how we wish our days were full of two boys running through the house, arguing over toys, singing songs, reading books, holding hands, building snowmen - together!

Finn brings us so much joy, so much laughter - we love him so much. We are so thankful for him in our lives.

And -oh!- how we miss you, Mr. Ellis. Your smile, your laugh, your animal sounds, your chachachachacha-kick dance moves, and your hugs. We are sending you hugs today.

Love you, sweet pea, love you forever.

Mama & Dada

Friday, December 4, 2009 0:39 AM CST

We miss you, Ellis - we miss you every day.

Many times we still cry out - if only! If only you were here with us, life would be so wonderful! If only we could see you again, hear your laugh, have you call our names, feel your arms around us. If only!

Your little brother is growing up so fast. He has already tried lots of different foods, a sippy cup, and is on the verge of crawling. He likes "tummy time" a lot better than you ever did! Every once in a while he turns his head just so or smiles just right or giggles under a blanket while wiggling uncontrollably with excitement at "hiding" just like you used to do. Those are bittersweet moments and yet the most amazing gift we could ever imagine.

Oh, Ellis, you'll like this secret about your baby brother: When Finn was born in June, he had hair. But, like a lot of babies, his hair started to fall out pretty soon after we brought him home. One day your dad noticed something pretty special - your little brother Finn has a birthmark! On the back of his head! What a funny spot for such a funny shaped...well, isn't that incredible - it's an "E".

But, Ellis, you already knew that, didn't you?

We love you.

Love,
Mama, Dada, and Finn

Wednesday, June 3, 2009 10:50 AM CDT

Ellis is a big brother!

Finneas Broderic Bergstrom
born Tuesday, June 2 - 7:46 a.m.
9 lb 5 oz

Finn and Mom are doing fabulously.

"Broderic" = scottish term for brother

We have begun to tell Ellis stories to this little guy, who will always know he has a big brother.

We love you and miss you, Ellis!

Love,
Mama and Dada

We have pictures of Finneas!
Warning: they are super cute.

To view the pictures, visit the following website:

http://www.firstdayphotogalleries.com/pickpic/gallery/login.php

Then enter the following passcode:

FSH060409bFinneas

Enjoy!

Wednesday, March 25, 2009 7:29 AM CDT

Happy 5th Birthday Ellis. We Love You.

Mama and Dada

Thursday, December 4, 2008 12:01 AM CST

December will forever be frosted with memories of Ellis…
Warm, delicious memories of giggles, hugs and smiles
Mad cow “moos” in loud, laughing gasps of air
“More” signed sweetly, then more urgently as
frustrated mother-fingers work to undo bits of chewable deliciousness

Winter will forever be wrapped in memories of Ellis…
Icy, chilling memories of efforts to heal, undone or ineffective -
Of hope when new treatments were tried and good days came –
“All Done” when there was nothing left to try…

Life will forever be lighted with the glow of memories of Ellis…
Asking to “walk” when he needed help just to stand
Drumming like a crazy-man and dancing to his own music
“Life is good”- you taught me much, brave little boy.
I love you.
Grandma Kay

Two years. Two years without our son. Two years without his hugs, his laughter, his smile, his tears, his voice calling us. We miss him so much.

Thank you to all who still visit this page and remember our son. Thank you to all who still mention his name and tell his story.

Thank you, too, for caring for Sam and I. We are ok, of course - enjoying our jobs teaching music together, enjoying time with family and friends, and - these last few months - anxiously and wistfully and joyfully and tearfully watching and waiting with our second child, due in May.

It is a mixed-up thing, life. But we are determined to hold on for all that it will bring our way.

So, Mr. Ellis, two years it has been! We miss you, every day more and more it seems. I don't know how we survived this long without you, it seems impossible. We love you so much and always will.

Love,
your Mama and Dada

Friday, July 25, 2008 11:59 PM CDT

Dear Ellisville,

Today is two years since Ellis got his new heart. We still miss him each and every day more than words could ever explain. He is still very much a part of our daily life and thoughts and identity as a family - nothing will ever change that.

Ellis continues to have an impact on this world, and the drawing above is another example. Last year, a man named Tom Falsey contacted Sam asking for permission to reprint Sam's letter to Ellis (that was read at the funeral) in a book about people whose lives have been affected by organ donation. This summer, the book was published and it also included this wonderful drawing of Ellis by James Jackson. The book is called GIVING LIFE and is a wonderfully moving tribute to donors, recipients, donor families, and all those who are part of this amazing gift. You can find out more about the book with Ellis's story and Sam's letter by visiting www.crystalvisionbooks.com. We hope that Ellis can continue to inspire others to donate life.

The picture of Ellis and his heart buddy, Jack (on the photo page) was taken by Ben Garvin and printed in the Pioneer Press after the 2006 HeartWalk. We were so privileged to meet Jack Corbo that day, fellow heart-transplant-warrior, and his strong parents and twin brother. Together Ellis and Jack greeted each other that day and now both these strong, brave, loving boys have left this world. Too many losses, too many tears.

We miss you Ellis.
We love you.
We will always be your Mama and Dada.

Tuesday, March 25, 2008 10:45 PM CDT

"Undo it, take it back, make every day the previous one until I am returned to the day before the one that made you gone. Or set me on an airplane traveling west, crossing the date line again and again, losing this day, then that, until the day of loss still lies ahead, and you are here instead of sorrow." -Nessa Rapoport

Happy birthday, dearest Ellis. We miss you so much - more than we could ever tell. Every day we talk about you and remember little things -

~how you would rub your chin when you were trying to make a decision as if you had some sort of beard like your dad...

~how we would set our "to do" list in the car and you would help me count the items with your fingers, you were so proud to know your numbers...

~how you would cue us to start the applause after you "performed" your animal noises or letters or a therapy exercise...

~how you would answer questions with the "wrong" answer on purpose just to make us laugh, even put the puzzle pieces in the "wrong" spot just to get our reaction, then giggle...

~how you would give thumbs-up to nurses even after blood draws or shots and even with the tears still wet on your face, as long as it was "all done", you were ready to celebrate...

~how sensitive you were to music - slow songs (especially Brahms' Lullaby) would make your tiny face crumple with tears while a cell phone ring tone or the first few notes of Elmo's song could put a smile on your face and excited arms pumping in the air...

This is your 4th birthday! We sent 4 balloons to you today, from the park where you liked to swing. One red (for Elmo!), one yellow (for Big Bird!), one blue (for birdies!), and one green (for turtles, of course!).

You know what, Ellis? There is a very special concert coming up, a concert that will have a brand new piece of music, written especially for you. It will have lots of drums and a special part for tuba and trumpet - all your favorites! The man who wrote the music, Stephen Paulus, we told him all about you so he knew just what to do. The concert will have lots of music on it, but that will be the piece your mama and dada are looking forward to the most. We hope all your friends will come and hear it on Thursday, May 8, 7:30 p.m., at Anoka-Ramsey Community College in Coon Rapids. It will be a very special night.

Well, Mr. Ellis, we cry sometimes because we miss you, but mostly we try to think of all the happy things you showed us. We love you so much.

Love,
your Mama and Dada

"It is hard to sing of oneness when our world is not complete, when those who once brought wholeness to our life have gone, and naught but memory can fill the emptiness their passing leaves behind.

But memory can tell us only what we were, in company with those we loved; it cannot help us find what each of us, alone, must now become. Yet no one is really alone; those who live no more, echo still within our thoughts and words, and what they did is part of what we have become.

We do best homage to our dead when we live our lives most fully, even in the shadow of our loss." -a prayer for Yom Kippur

Tuesday, December 4, 2007 10:58 PM CST

"To Mama and Dada,

Celebrating Ellis...

Why Ellis had to leave us, I'll never know why;
I miss his hug, his smile...I cry,

I know he's in heaven, a place of pure love;
With family, puppies, kitties, and God above,

A place with no time, no want, or pain;
A place so wonderful, we cannot explain.

Ellis lives in our hearts...Forever!

Wishing us peace & love always,

-Gaga" (Grandma Mary Gaye)

Thanks to all of you who remember Ellis each day and especially today. We seem to have somehow, some way survived a whole year without our dearest son - without the center of our world. Sam and I have wandered through this day as we wander through others: teaching music, being together, gathering with family, looking at pictures and videos, sharing memories, and hoping against hope that we are a year closer to seeing our Ellis again.

Love,
Melissa and Sam

P.S. This Sunday, December 9th, is the concert at 2 p.m. by the Lake Wobegon Brass Band in memory of Ellis and to benefit the Ellis Bergstrom Memorial Music Scholarship and Children's HeartLink. Please check out the links below for more information and advance ticket purchasing - join us for good music, good memories, and a good cause.

Thursday, November 22, 2007 12:58 AM CST

A year ago...

***Thursday, November 23, 2006 9:16 PM CST
Sam and I are having a tough time being thankful today.

Did you see that picture?
That is a picture of a child clinging to life.
That is a picture of a child who has spent EIGHT MONTHS of his 2 1/2 years clinging to life.
That is a picture of a child who has fought harder than any human being I know just to be here.
That is a picture of a child that has known intense pain and more fear than I will ever fathom.
That is a picture of OUR child.
Our dearest, sweetest, most beloved son.

I look into his eyes and cannot say I am thankful for any of this. I know he has inspired thousands and yet it is still too high a price to pay. I know he has moved many to acts of love and generosity, but nothing in this world is worth the suffering of a child. I tell him over and over again - I would take it all away from him if I could. I would do anything in the world to trade places with him...

And yet...

I have to look again at this picture and at the pictures we have hung above his bed. Pictures of his halloween costume, of pre-transplant strolls, of baths and pajamas and swingsets and puppydogs.

These are pictures of a child who has known love every moment of his life, who has never been alone.
These are pictures of a child who has been tenderly cared for by nurses and respiratory therapists and echocardiogram techs and occupational therapists and physical therapists and speech therapists and radiology techs and surgical nurses and cath lab nurses and dialysis nurses and pheresis nurses and residents and fellows and doctors and surgeons.
These are pictures of a child who has so much life yet to live.
These are pictures of a child who has so much strength and so much joy and so much trust.

These are pictures of a child,
our child,
our Ellis,
for whom we are so thankful.

Melissa, Sam, and Ellis***

***Today...
It is hard to be thankful. Even a year ago we had hope. Now? Empty. A year ago we had Ellis - though suffering and profoundly sick - he was with us. Now? Empty and quiet house, empty and quiet hearts.

But if there is one true thing we know about all of this: we are forever blessed to have been the proudest Mama and Dada of the bravest and strongest boy in the world.

We love you, Ellis. We are thankful for you and all the love and light and hope you brought into this world. We miss you every moment of every day. I hope somewhere you can feel our hugs and kisses.

Love,
Mama and Dada

P.S. The one-year anniversary of Ellis's death is approaching. We are thankful for an opportunity to mark this with a concert and we invite all of you to come and share with us in music ("Little Drummer Boy"!) and picture slide shows and fundraising for the Ellis Bergstrom Music Scholarship and Children's HeartLink.

The concert is presented by the wonderful ensemble, the Lake Wobegon Brass Band - www.lwbb.org - on Sunday, December 9th (also National Children's Memorial Day, a day set aside to remember all children who have died too soon). At 2 p.m., this concert is perfect for families and anyone who enjoys good music, good memories, and a good cause. Join us on the campus of Anoka-Ramsey Community College in Coon Rapids for this wonderful event.

Check out the link below to purchase tickets (advance reservations recommended). Thanks to all of you for continuing to check in and for your continued memories of Ellis.

Wednesday, July 25, 2007 2:57 AM CDT

Our Ellis has inspired music, many many of you, and now art.

We are honored beyond words to have the artwork pictured above created by Ryan Stadler and commissioned by the amazing staff of Fairview Ridges Pediatric Speciality Clinic where the original now hangs proudly in the main hallway, complete with gallery lighting!

How can I even describe the feeling, the tears, the pride in our son - when we received a letter this winter explaining that the clinic was getting a new space and the staff wanted to bring the memory of Ellis with them and would we be ok if they commissioned a work of art in his honor?

How can I describe the task of meeting with Ryan in our home, showing him Ellis's room, his photos, and telling him the story of the strongest and bravest boy in the world?

How can I describe the day when Sam and I arrived at the new clinic to see this gloriously joyous and beautiful work hung with pride and honor in a place where the amazing doctors, nurses, and clinic staff who cared for Ellis so deeply still work with kids every day? That they will get to see his smiling face and remember his courage and remember our unending gratitude for their tireless dedication, passion, and compassion? That families facing uncertain futures with smiling yet struggling kids may find some hope, some smiles, some words of comfort and strength from this amazing representation of his spirit?

Thank you Fairview Ridges Pediatric Specialty Clinic Staff.

Thank you Ryan Stadler (see more at www.mnartists.org/ryan_stadler)

Thank you Ellis for inspiring us all.

~~~

Sam and I returned safe and sound from our travels. We had a wonderful time visiting musical museums, composers' homes, live concerts, and just being together.

~~

We came home just in time to be with the Bergstrom family for Sam's cousin Abbie's beautiful wedding day and then, two weeks later, for her mom's (Sam's aunt Debbie's) funeral. If ever a family can come together in great joy and great sorrow, these were the days of both.

Debbie holds the unique honor of being the only extended family member whose name Ellis knew and repeated on a regular basis - debbie, debbie, debbie, debbie, debbie. Ellis and his Gaga (MaryGaye) would call Debbie on the phone many times so he could chant her name to her.

Debbie is strong, as strong as they come. She took a cancer diagnosis and a dark prognosis and chose light and life. She pursued a multitude of "alternative" treatments that strengthened the body, the immune system, the nutrition, the spirit, the soul. She lived and loved and laughed and even danced at her daughter's wedding last month. We are so proud to know her.

We were blessed to have time with Mary Gaye, Ron, and Heidi the week between Debbie's death and her funeral and wonderful gathering at the farm. We were thankful to be a part of preparations and family gatherings with her husband Steve, her son Ben and his wife Natalie and their two sons Owen and Logan (fellow heart warrior!), her daughter Abbie and husband Travis, her daughter Angie, and her parents - Sam's grandparents Enid and Bud. We never, ever wanted to share this in common with them - losing a child. Yet here we are...

~~~

It was a strange thing, walking that walk again. The flurry of activity and strong emotions about having each detail just the way it should be. And yet the emptiness and shock and silence and strange feeling that something is wrong, something is different forever, something you can't quite even grasp.

~~~

One year post-transplant. A mixed-up time again. (Will there ever be any times ahead of us that won't be mixed-up?)

If Ellis were here (IF ONLY!), we would be celebrating this milestone day of new life - we would now be invited to write a letter of thanks to the donor family - we would be making plans for his fall entrance into preschool - we would be able to bring him out into more public places like the zoo or the air-conditioned mall.

If Ellis were here (IF ONLY!), our lives would be centered still - on love, on his intense medical and therapeutical needs, and on treasuring each day of this gift, not filled with comparatively meaningless activites and gigs and errands and cleaning and waking up and going to sleep.

If Ellis were here (IF ONLY!)...

~~~

Please keep our friend Jack, whom we met at the heartwalk a couple years ago, in your thoughts and prayers and ACTIONS. He had a heart transplant already once in his three young years and he now needs another. Think of him, send him (and his parents and twin brother) all the strength you can muster - yes. Pray for him (and his parents and twin brother) for peace and hope and joy during this unbelievable second time through this walk - yes. But go ahead - for Jack, for Ellis, for all the kids and adults who need your help - and DO SOMETHING: donate blood, register yourself as an organ donor, tell your family about those wishes, tell everyone you know about the amazing gift of organ and blood donation. The need is great. It is giving the gift of life.

~~~

One story of our trip before I sign off.

We visited the apartment outside of Vienna where Beethoven was staying when he wrote his famous "Heiligenstadt Testament." This document borders on a suicide note to his brothers, admitting his ever-increasing deafness and despair, but Beethoven persevered through the darkness he felt was beginning to overpower him by this incredible loss, clinging to the thought that he still had music to write, still had something to offer this world.

He closed the letter with a postscript that, when I sat at the window in this apartment reading this letter, the grief Beethoven described struck me completely anew. Now this letter I've read countless times sounded familiar, the grief intimately mine, though our sources were different. Though, admittedly, Beethoven no longer hearing music and we no longer being with our son has a striking parallel as well - Ellis is our inspiration, but now we, too, only get to experience him through shadow and memory. Beethoven wrote/pleaded/prayed this:

"O Providence - grant me at last but one day of pure joy - it is so long since real joy echoed in my heart - O when - O when, O Divine One - shall I find it again in the temple of nature and of men - Never? no - O that would be too hard."

Still clinging to that sliver of hope that Beethoven has his music - and that Ellis and Debbie and Ashley and Micah and Bill and my Grandmas and Grandpas and Carly and Kristina and Gordy and Magda and Brady and Janice's Dad and Kristen's Mom and Kara and Derian and Ellis's heart donor and ALL those we love are singing along!

Melissa & Sam
proud mama and dada of Ellis,
the strongest and bravest boy in the world

Monday, June 4, 2007 1:13 AM CDT

Six months ago we said goodbye.
Six months ago we held you in our arms for the last time.
Six months ago we kissed your broken body
and covered you with a turtle blanket.
Six months - a blink of an eye - an eternity.
Six months without you, our son.
Six months without the strongest and bravest boy in the world.
Six months is too long.
And yet it is six months closer to the time when we will see you again.
We love you, Ellis.
Love, your Mama and Dada

Dear Ellisville:

Six months have passed since that day -
the day our world stopped.

How can our world stop and yet go on?

We recently had a brief visit with a newly-bereaved mom. The pain in her eyes and voice and her panickedly gripping hug was startling - startling because it was familiar, and startling because for us it is different now - our grief had changed and we had hardly noticed.

That horrifying newness, those sharp re-realizations, the pain that leaves you breathless - those are the descriptions of December, January, even February. Paired with a numb fog to which we retreated for work, social outings, church, errands.

I remember the day I told myself to stop. To stop with the surreality, to stop with the false hopes. I told myself not to accept this, but at least to finally grasp this - this new world, this world without Ellis. It was late February and I arrived home from work and made my way down the driveway to get the mail (like everything else, this reminds me of Ellis, as we would often get the mail together singing the song from Blue's Clues or if it was too cold I would go alone and he would watch and wave and kick with excitement from the kitchen window). As I walked to the mailbox, I had this seeming revelation that felt as real as anything I'd experienced - it had all been a mistake, a mixup! Ellis was fine! He had just been lost for a bit, and now he was waiting for us to pick him up - happy and healthy and homesick. I knew - I KNEW - there would be a letter to this effect in the mail that day. I would open the mailbox and there it would be and I would rip open the envelope and rush inside and call Sam and this whole nightmare would be over. I KNEW.

But, of course, there was no letter.

Of course.

The devastation, pain, great big sobbing choking wails of grief overwhelmed me again as I told myself to stop looking for him, stop hoping, just stop.

For me, this was the beginning of a very dark and angry time. Escaping with alcohol in the evenings became an admittedly too-frequent occurence. It helped me fall asleep without the flashbacks of those last days, it helped me feel separate from the grief, if only for a few hours. I will forever be ashamed of my attempts to escape anything that has to do with my son.

We retreated from friends and family, clinging to each other - seeing in each other the only other person on the face of the earth who lived each day of those hospital nightmares with Ellis, the only other person who spent countless sleepless nights in chairs near Ellis, the only other person who's eyes looking back did not judge or question or look away in fear, discomfort, pity. We are Ellis's parents. We are his Mama and Dada. Always.

Amazingly, Ellis's birthday, a day I dreaded and feared, seemed to act as a cleansing walk through his life, visiting the places he visited, seeing the people he knew. Beautiful blue skies, balloons floating up from the park, hugs at the PICU from doctors and nurses (some of whom wore their turtle scrubs for the occasion!), time with family, time remembering Ellis - this was a day that seemed to jolt me (a bit) out of my self-created pitiful pit and rejoin life. Life is good, right? Some days that saying grates a bit, I must say, but other days it gives me a glimpse (a memory) of hope.

With the arrival of spring, we have moved forward with a few plans. We met with world-renowned composer Stephen Paulus so he could begin work on a piece for concert band in Ellis's honor. We placed a brick at the Angel of Hope in Maple Grove. We saw the awarding of the first Ellis Bergstrom Memorial Music Scholarship at STMA High School and will see the other two awarded this fall at Augsburg College and Anoka-Ramsey Community College. We paid back the mortgage payment that the amazing SPARE KEY FOUNDATION (www.sparekey.org) had given to us while we were in the hospital and I was on unpaid leave.

We even pilgrimaged to Ellis Island for Mother's Day. After we had explored the island's museums and gardens and the ferry pulled away, I cried. I cried because Ellis isn't there, either. He isn't at home, he isn't on Ellis Island, he isn't at Grandma's house, he isn't at the hospital, he isn't sleeping in his big boy bed - he isn't with us anymore on this earth. I still fight this! I still feel like I can argue with this! As if it is open for debate and if I just come up with the right cosmic reasoning, he will come back.

Swimming through surreality, grinding through anger, and just plain old holding on to each other during the dark, empty, bottomless silence. This is our world. It is not new, it is not horrifying (most days), it is familiar. Some days I have moments where I realize that I hadn't thought of him for an hour or so - maybe I was teaching or rehearsing or correcting papers - and I grieve again. For whether or not life is good, it sure has the amazing capability to keep on going, no matter if the person living it wants to or not. Sometimes I imagine that our life force comes not from ourselves, but from our family, our friends, our Ellisville community, perhaps even Ellis himself.

So our lives keep on going...

Sam has made the tough decision to leave his job of 9 years at STMA highschool. (My first reaction? How will Ellis come back and play cowbell at the pepbands if Sam isn't the band director there? - Keep on swimming, I must.) Sam will begin teaching at Anoka-Ramsey Community College this fall. Yes, the same music department where I teach. It's a good thing we like each other and respect each other's work and gifts tremendously - I am very excited to know him as a colleague and I think he will be a great addition to our department.

And our lives keep going...

We leave for Italy today. Yes, today. Thanks to the generous "get away from it all" gift from my Aunt Julie, Cousins Amy & Tom, Melanie & Kevin, Lori & Tom, Bruce & Tammie, Sister/Brother Sarah & Adam (and I can't forget the "priceless" contributions of MasterCard and Visa!), we will travel through Italy and Austria for the next three weeks, renewing, reorienting, remembering, and re-energizing.

For life goes on, whether you want it to or not.

Change continues to occur, no matter how tightly you cling to the past.

Sadness, surrealness, even sullenness all surround us, no matter what you do to try and escape.

And somehow light breaks in.
Sometimes light dawns at the corners of the darkness.
Somewhere (WHERE? WHERE? WHERE?) Ellis is. Not was. Is.
He IS.

He is.

Clinging to that hope,
Melissa & Sam

Sunday, March 25, 2007 9:12 AM CDT

Hello Ellisville:

Well, its Ellis' Birthday today and we've been looking to this day for several weeks with mixed emotions. We have been asking ourselves what we should do this day to celebrate his life, honor his spirit, and remember some of the many good times. I don't know that we ever thought of the right answer, but we came up with a few ideas.

Since Ellis spent alot of time in the hospital, we thought we would bring some gifts that they need there for the kids. We will also drop off a cake for the wonderful nurses, doctors, and staff at the hospital. The Gillette Minnetonka clinic got some cake and cookies on Friday to thank them for all their hard work and patience during endless therapy sessions.

Someone also gave us the idea of putting flower seeds in some ballons and letting them drift up into the sky. When the balloon pops, the flower seeds drift back down and make the world a little bit better, just like Ellis did. And of course, Ellis loved ballons, so we'll send some up this afternoon. (And, yes, Ellis's over-functioning mother checked with the National Balloon Council to make sure this was all ecologically correct and no turtles, birdies, or squirrels would be in danger.)

A few of our church families have 3 white roses up front today in honor of Ellis's birthday. Thank you for continuing to remember him and us in your prayers.

We have also been talking much about the generosity of all of our friends and family over the last several months. So many people have given so much and we are so grateful. We wanted to honor Ellis with all of the gifts and have decided to give back to the hospital by purchasing some sleeper chairs that can fit into the rooms for the parents of children who are in the intensive care unit. We know what its like to sleep in regular chairs down the hall.

We have also decided to start scholarships at St. Michael-Albertville High School, Anoka Ramsey Community College, and Augsburg College in Ellis' name. All three places are wonderful schools that have meant alot to us and Ellis.

This Thursday night (3/29) we are going to the University of Wisconsin in River Falls where they are holding "Rockin' for Robbie", a benefit to raise money to make hospital stays a little bit easier on kids. The sorority sponsoring the night of bands and dancing will feature Ellis and talk about the importance of organ donation. They'll show pictures and play Ellis's Song of Love and best of all - lots of music!

We recently met with the president and staff of HeartLink, an organization that connects our wonderful medical staff with children in other parts of the world who need heart surgery desperately. They wanted to thank us, they said, for all the donations they received in Ellis's name. We told them we would pass on their thanks to you - all of you - who contributed so generously. They received enough money to pay for a child's heart surgery, and thus, saved a life of a kid like Ellis. What an amazing gift.

So - happy birthday, Ellis. Your mama and dada love you and miss you so much - today and always.

Sam & Melissa

Sunday, February 4, 2007 2:53 AM CST

To the Glory of God and in Celebration of the Life of
Ellis Joshua Bergstrom

Born March 25, 2004
Died December 4, 2006

Service December 9, 2006, at Holy Nativity Lutheran Church, New Hope, Minnesota

Meditation by Rev. Jane A. McMahill

Sam and Melissa, dear friends and loved ones of Ellis, this is a day of words:
words of love and hope,
words of sorrow and bewilderment,
words of anger and hurt,
words of peace and joy,
words of the past and words of the future.

And yet, this is a day of no words, for no words can truly do justice to all that is churning and swirling inside each of us.

No words can express the depths of grief at Ellis’ death, the ache and anger at all the pain this little one endured so very bravely, the bitterness of losing a beloved child.

No words can fully give voice to the profound thankfulness for our dear Ellis’ life and for the sheer wonder of his love and joy and courage, his endurance and grace.

In the midst of all these memories and feelings, we come together with our words and our wordlessness, with our tears and our hugs, with our doubts, our fears, our hopes, and our joys to celebrate God’s gift of Ellis.

We come together seeking comfort for our pain.
We come with questions about the meaning of life and the meaning of death, for Ellis’ life and death bring us face to face with those fundamental questions of our own existence.
We come seeking a firm place to stand amid the flood of loss and grief.

We have heard the words of the Psalmist saying,
“I lift up my eyes to the hills. . .My help comes from the Lord. He will not let your foot be moved; he who keeps you will not slumber.”

Those are wonderful words of comfort and hope. As much as we might like to feel that deep within our being, I suspect many of us are not certain about that today. We are not sure what those words mean when we have prayed and prayed and done everything humanly possible to sustain Ellis’ health and life, and yet he is gone from our midst.

This turmoil and confusion are why our ancestors in faith wrote many other Psalms that sound very different, those that Old Testament scholar Walter Brueggeman calls “psalms of disorientation,” the psalms that express what it feels like when life has been turned upside down and inside out.

“Save me, O God, for the waters have come up to my neck. I sink in deep mire, where there is no foothold; I have come into deep waters, and the flood sweeps over me. I am weary with my crying; my throat is parched. My eyes grow dim with waiting for my God.” (Psalm 69:1-3)

“My heart is stricken and withered like grass; I am too wasted to eat my bread. . .I lie awake;. . .All day long my enemies taunt me; . . .For I eat ashes like bread, and mingle tears with my drink.” (Psalm 102:4,7,8)

The entire book of Lamentations is an eloquent expression of grief that teaches us to give voice to the fullness of our grief and despair. In the original Hebrew each chapter is an alphabetic acrostic rehearsing the story of grief—the laments—from A to Z. This very structure tells us that even the deepest, deepest grief has limits. It can only go from A to Z. When you have gone from A to Z, you can start over again, but there is no more. This terrible agony which right now feels limitless and unending has its limits. A: we are so angry. B: our beloved child is gone. C: we cry day and night. D: we are devastated and drained. Lamentations teaches us to pour out our grief totally and completely to God, in the same way Jesus said, “Come to me, all you that are weary and are carrying heavy burdens, and I will give you rest.”

Some of us find it easy to feel our anger and bitterness. Others of us have a harder time recognizing them and try to hide them when we do. Many of us find our anger directed towards God: “I prayed and prayed and you didn’t answer my prayers. Don’t you care, God?” Perhaps we then feel guilty for even thinking such thoughts.

I believe that the message of the Psalms and Lamentations, that the invitation of Jesus, is to pour out all those thoughts and feelings to the Holy One. When we bring all that turmoil and chaos, all the hurt and anger and bitterness, all the pain and loss, all the darkness in our hearts—when we offer all that to God, we are opening ourselves to God’s transforming, healing power. Our laments are prayers that God take the darkness and chaos and once again create something good. If we feel unable to unload all this on God, we are much more apt to use this pain and anger to lash out at those closest to us. This load of grief is too heavy to carry for too long.

“Learn from me,” Jesus said, “and you will find rest for your souls. For my yoke is easy, and my burden is light.” I have always heard “light” as an adjective. This week I realized that the English allows us to read “light” as a noun as well. “My burden is light.” What we are meant to carry is light itself—the light of love, the light of the world.

Jesus said, “You have hidden these things from the wise and the intelligent and have revealed them to infants.” Have we not seen that so clearly in Ellis’ life? Most of us cannot comprehend the challenges that Ellis dealt with from day one, yet he radiated love and joy and courage and faith. Now that is not to say that he was not a real child who hurt and cried. Yet none of the enormous health problems he faced stopped him from enjoying the rocks in the parking lot or the crunchy autumn leaves or the rhythm of the drums. He talked and walked and laughed and sang.

Melissa and Sam, Ron and Mary Gaye, George and Kay, Heidi, Joshua, Adam, Sarah, and Grace, Ellis thrived in the light of the profound love you lavished upon him, and he loved you right back.

And dear friends of Ellisville, never doubt for a moment that your prayers and love were life-giving for Ellis. As much as we wish it, healing does not always mean that the body is cured, and a life long in years does not guarantee the wisdom, grace, and love that Ellis embodied in his brief journey on this earth.

We honor and make holy our memories of Ellis, not by clinging to our hurt and anger and bitterness, but by nurturing in our own lives the love and wonder and courage he lived. We pay tribute to Ellis when we make our gift to others be light and love.

Right now it feels like there will never be a moment when thoughts of Ellis and the pain we feel will not be all-consuming. However that day will come. It will not mean that you have forgotten Ellis or that you are being disloyal.

It will mean that the love and the memories are securely stored in the sacred places in your hearts.

It will mean that the Light that carried Ellis so gently to his next life is at work within you and healing you.

It will mean that the transforming power of God has taken all this turmoil and created something new and good. God does not waste our pain and grief.

All of you beloved ones of Ellis, and especially Sam and Melissa, over the coming months and years, you will find yourselves working through this overwhelming loss in your own individual ways and on your own timeline. Sometimes one of you will be up and the other down. Sometimes one of you will seem to be stuck. Sometimes it will be hard to look at one another because you remind each other of the pain of losing Ellis. This is a time for holding one another tightly and loosely. Hold tight to the love that you share, and give one another space as well. Don’t take your spouse’s expressions of grief personally. When the journey seems too hard or too long, call upon friends, loved ones, or other helpers to lend a hand or an ear.

Ellis has been a wondrous gift in your life together, Melissa and Sam, a gift that has required much of you. You have been challenged to find strength and endurance you did not know you possessed. You have found in each other and in your own hearts more love than you knew existed. You have learned to find joy and happiness in the midst of unimaginable circumstances. You have shared your journey with all of us with grace and love, and that has allowed all these friends and loved ones to support you. All these gifts that you have because of Ellis will be gifts that help you through the times ahead.

For the rest of you in Ellisville, don’t hesitate to talk about Ellis with Sam and Melissa. It will help them to know how much Ellis means to you and to know that you too remember and love him. Continue to send your love and prayers as you have so faithfully throughout Ellis’ life.

Part of the craziness of this time is the paradoxical mixture of joy and sorrow, of love and pain, of celebration and grief. The poet Kahlil Gibran penned words in The Prophet that capture that strange interplay:

Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises
was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater."
But I say unto you, they are inseparable.
Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

For Ellis, the time for death has come.

For those left behind, it is terribly difficult to accept that this was the time.

We long to have him back with us, healthy and happy. There is so much left undone, so many dreams that could not be. We are reminded that it is not what we do or how many years we live that makes our lives complete.

It is God Almighty who takes our incomplete and very human lives and makes them eternally beautiful, whole, and complete. We give thanks that, in love, God has made the life of Ellis Joshua Bergstrom beautiful in his time and in eternity.

That same God of mercy and tenderness upholds each of us in this time of loss. May you find comfort and hope as you are open to new experiences of this vast love of God each day of your life, this love Ellis was born to bring.

Amen.

Thursday, January 4, 2007 11:57 AM CST

"By writing it all down (all? - no: one thought in a hundred) I believe I get a little outside it." -C.S. Lewis from A Grief Observed

One month ago...

I don't even have the vocabulary to describe the passing of time since then - has it been blurringly fast? Has it been excruciatingly slow? Both?

Yes, both.

That seems to be the most true description of every aspect of this new reality - both. For every emotion, there seems to be an equal and opposite emotion present as well. Are we ok? Yes, I suppose, but simultaneously I want to scream – “NO! we are not ok, we are the most not-ok we've ever been”. And yet, at the same time, somehow we are ok.

That's why I am writing to you, our dearest Ellisville friends and family: We are ok.

We appreciate so much your worries and prayers and thoughts. Yes, Christmas was difficult, and yet, surprisingly, no more difficult than the day before or the day after. "The act of living is different all through. His absence is like the sky, spread over everything.” An unimaginable month. A month? A moment. And yet an eternity.

Perhaps the most surprising part of all is the newness of grief each day. "New every morning" is the phrase that comes to mind, now turned painfully on its head. Sometimes upon awaking, sometimes in the middle of the day, sometimes in the middle of the night - it is suddenly, horribly new again. It is as if my whole body at one time could not accept Ellis being gone. So now, steadily, each day, one cell of my body or one synapse of my brain finally opens itself up to that pain, still as raw and sharp as the day we said goodbye.

Sometimes it is a physical realization. Like on Christmas Day, when asked to stand in church, and I turned to pick him up from where he would have been, no, where he SHOULD have been, reading books right there, next to me. And it was startling - where is he? And then, the pain…

Sometimes it is in words you have spoken countless times that now you cannot. In the car, talking with Sam about how we would do an upcoming errand, "…so then the three of us..." - the words, spoken so casually and lightly, hung in the air, everything else stuck in my throat. New tears, new pain, one more moment of realization.

Sometimes it is in your thoughts alone. Like leaving town for the first time and honestly thinking, "But how will Ellis find us when he comes back?"

The reality of forever, forever on this earth, forever in this life, is so hard to comprehend.

Sam and I are transitioning back to work this week and trying to make sense of a world without our son.

When we were in the hospital after the transplant, I often used the word "full" to describe that place, that time - full of fear, love, hope, frustration, sadness, excitement – full.

Now I would choose "empty". "Up till this I always had too little time. Now there is nothing but time. Almost pure time, empty successiveness." C.S. Lewis again, writing after his wife died. Empty.

Amazingly, though, there are things that reach through the fog and fill us -

~hundreds of you who came to the visitation and the funeral, who sang with us and cried with us.

~hundreds and hundreds of cards sent to our home letting us know that you will not forget Ellis.

~poems written, music composed, artwork created and shared about our dearest son.

~generous gifts in Ellis's memory to Childrens HeartLink, CaringBridge, and the University of Minnesota Children's Hospital.

~a whole crew of friends and family who just happen to be skilled contractors, roofers, workers working on our house helping us to finish the "ready and safe for Ellis to come home" remodeling project

~an endangered sea turtle adopted by one of our dear PICU nurses in Ellis's honor.

~generous gifts from my family so that Sam and I can travel, see the world, pilgrimage to Ellis Island, retreat to a quiet place, freedom to roam, renew, reorient ourselves.

~gifts to the Humane Society to save those precious kitty cats.

~Paul the mandolin player using our humble thank you gift to buy new strings, so whenever he plays for other sick children, at the campfire - that music will be in memory of Ellis.

~a tree to plant in our yard come spring.

~gifts to us from so many of you that are allowing us donate to the PICU at the University, and begin plans for music scholarships where we teach and where we have studied so that students who have shown great courage and determination like our Ellis can pursue the music that he loved so much.

So many gifts of time, energy, generosity, artistry, and love. Thank you.

I had imagined sharing this website with Ellis when he was older, a record of his amazing courage. Now, like everything else in my life, I feel a bit lost about its place and I don't know the path it will take.

What I do know is that we celebrate, we are given strength for a new day, we are encouraged when we hear about "Ellis moments" – someone running into an Ellis Avenue and thinking of him, when two otherwise unconnected people connect about his story, a mention of his name in a Sunday sermon, a turtle reminder, a song that brings him to mind, a memory of him, a Christmas letter with “Life is Good” as its wish for family and friends.

Please continue to share with us those moments in this place.

We are sustained by the hope that Ellis, the strongest and bravest boy in the whole world, will never - ever - be forgotten.

Sam and Melissa

Monday, December 18, 2006 2:39 PM CST

Dear Ellis,

I have often daydreamed of a time when I would have the opportunity to tell your story to a large group of people. Maybe this would be at your wedding reception, high school graduation, or some other event where people are talking about how special you are. I actually pictured me telling your story to you in a time when you needed some encouragement; like when you didn’t make the high school baseball team or didn’t get a lead role in the school play. I imagined me telling you your own story to remind you of how special, brave, and inspiring you are. So here is your story:

I remember the day you were born. It was a rainy and stormy day in March. Maybe the heavens were telling me what I was in store for. Anyway, I remember how I felt when you entered the world. I remember feeling like I just meet this squishy faced kid and I already loved him beyond words. Your Mom and I didn’t really get to do the normal “hang out in the room with your new baby” stuff because you were sick. By the time the doctors figured out what was wrong, you weren’t just sick, but as sick as a baby can get. We new that parenthood would be full of worry and gray hair, but give us a break; you were only 1 day old. They told us they had to do a procedure immediately to fix your heart and said they weren’t sure you would survive. Well, you did survive.

We then spent some time in the hospital with you hoping we could take you home soon. They then told us that the only chance of this would be a heart surgery to fix your drum. The doctors told us again that they weren’t sure you would be able to survive. The surgeon even asked if you were baptized yet. You were the night before. Again, Ellis the rock star did great and survived.

A few weeks later the doctors did a silly test on your brain and told us that you were very sick. They said you would never be able to all the stuff you love to do like talk, walk, read books, and give hugs. The only sad part of this is that we had learned nothing from you before and we actually believed them. You showed all of us.

While we were still in the hospital, you were sick in other parts too. Your liver, kidneys, lungs, and heart all were doing their best to work. The doctors again told us that we would never be able to bring you home. We were with you every day and tried to make you comfortable by not letting people do stuff to you. Once again, you proved everyone wrong and you got better. You survived and we got to finally bring you home.

We thought our time together would be short because you needed a new heart and they didn’t want to give you one because of the stuff they told us about your brain. Before we knew it, you were playing with toys, saying mama and dada, blowing kisses, and walking in your walker. The doctors were blown away and told us you would get your new heart.

After you got your new heart, the doctors again said that you would struggle to breathe and would not be able to do it on your own. Well, once again you did it and proved them wrong.

We have all learned from Ellis’ story that you are brave and a survivor. We also thought that if you fought so hard every step of the way and proved everyone wrong, you would continue to do the same for a long, long time. I’m here to say that you didn’t have to keep fighting. It’s okay to say, “I’m tired and want to rest.” We are so proud of you. We are so proud to be your mama and dada.

It’s amazing how much someone can learn from a 2-year-old. It’s even more amazing how much I have learned from you. You have taught me a lifetime of lessons in two-and-a-half short years.

You taught me to Stop and smell the roses. You showed me this by taking your time and examining things most of us don’t even see. You had no problem with all of a sudden stopping in the middle of the parking lot on the way to a therapy appointment, sitting down, then patting the ground telling us to sit down next to you to look at rocks.

You taught me how important determination and will is. One doctor said that you would never walk. Then at a therapy appointment, while you were actually walking in your walker, another doctor said, “hey, this kid shouldn’t be able to walk.” It doesn’t matter what people say or even what your body says. What matters is what does your will say.

You taught me about your mom. You taught me that the woman I married turned out to be the most wonderful mother in the world. We both lucked out on this one.

You taught me life is good. Despite spending a quarter of your life in the hospital and being poked by hundreds of needles, you always seemed to get excited about something or have a smile on your face (when you were at home anyway). Life is Good. Life is worth enduring the pain to get to the good stuff.

You taught me about love. Before you came along, I had no idea I was capable of feeling so much love. The crazy part is that the love grows more each and every day. I thought this was impossible. But just like all of your impossible obstacles…………. anything is possible.

Every morning before I would leave for work, I would peek my head in your room and thank God for you and your Mother. I will continue to peek my head in your room and thank God for every minute we spent together, all of the wonderful memories, and all of the lessons you taught me by just being Ellis.

Ellis,

We will always love you and miss you more than you can ever know.

Love,
Dada

Sunday, December 10, 2006 9:57 PM CST

To those of you who gathered with us these last days,
thank you immeasurably.
To those of you who gathered here,
thank you for knowing, loving, and remembering our son.
We will share our letters that were read at Saturday's service, first Melissa's, then Sam's in a few days.
Thank you for breathing continued life into this space, this place, this community of Ellisville.

~

Our dearest friends and family:

Look around you! These are your fellow citizens and residents of Ellisville!

Oh, how I wish we were gathered this once for a confirmation, a recital – no, a rock concert by the new band “Minimal Stimulation”.

But we are here this day, the day I feared, the day I couldn’t even bring myself to imagine, even after countless conversations with furrowed-brow doctors and teary-eyed nurses.

Our Ellis – MY Ellis, my beautiful son, my Ellis – is gone.

Of course he lives on in memories, in photos, in the incredible impact he has had on all of us. Of course.

But I cannot convince my achingly empty arms of that.

I cannot convince the oh-so-silent house of that.

I cannot even convince myself of that. Not today. Not now. Not yet.

But we are here this day –Ellisville! Gathered together in one place!

We are here because the most awful and terrifying thing has happened to our littlest hero, and yet the world did not stop.

We are here because the bravest and strongest boy in the world has done the most brave and most strong thing in the world –

he has let go of this life.

This life that I have been so afraid of losing myself,
This life we seem to think is unending for any of us, pretending we can hold on.
This life I argued and screamed at God to continue at all costs for my dearest son.

Ellis let go.

I need to tell you about that day. I need you all to know how brave and strong our son was for us, leading us and teaching us how to let go, how to die, and how to live.

For three days before his death, Ellis struggled mightily. For three days, his body suffered tremendous injury in our attempts to save his mind, his heart, his life in some way. For three days, Ellis’s gift-heart held strong, steady, beating insistently that he was still there, he was not giving up.

That day, Monday, Sam and I somehow finally knew what Ellis needed. We finally knew that he was holding on, yes, but he was holding on for us. We asked for nothing more to be done to injure his body any further. We somehow realized his body was so fragile that one more procedure, one more test, might be the tipping point and he would leave this world on a table, in an operating room, alone. We could not bear the thought.

So we asked to hold him. Yes, we discussed with the doctors and nurses what steps to take for a peaceful and pain-free end. But first, we wanted to hold him.

Sue and Cindy helped us arrange all the breathing tube, the i.v.’s, the monitor cords.

Sam picked up his swollen, broken, battered body and placed him in my arms.

We sat together, the three of us, finally alone in this hospital room.

We told him how much we loved him and how proud we were of him.

We told him how no matter what happened we would always be his mama and his dada. Always.

We sang, “Ellis swings on the swingset, no matter where he is…”

And his heart rate, for the first time in all his illness - with no medical changes, nothing taken away from him, nothing stopped, nothing turned down, his heart began to slow. 130, 120, 98…

We sang, “Ellis loves to hear music, especially the drums…” 85, 76, 65…

“And Mama and Dada are with him every day…” 40, 35, 20…

We looked up as the doctor came in to shut off the monitor and we realized he was slipping away at that very moment.

We wept, we wailed, we whispered goodbye to our most precious son. Our Ellis.

We spent the afternoon with him, bathing him, putting lotion on his bruised and blackened skin, taking away all the tape and bandages and tubes, covering his countless wounds with a turtle blanket.

As he laid in his hospital bed, the sunlight shone on his face through the window. He was so beautiful. He was shining. He was full of light.

And that is why we are here today, this day.

This most awful - and awesome - day.

Ellis brought us light in our world, no matter how dark it seemed.

Ellis had SO much joy and love in his spirit that he had enough to share with each of us.

As we said to him each night before sleep,
Got your kitty cat?
Got your nana?
Got your mama?
LIFE IS GOOD!

Let us celebrate together with his favorite instruments: pipe organ, trumpet, piano, cymbals, and especially the TUBA!

Let us celebrate together the strongest and bravest boy in the world – our Ellis.

Monday, December 4, 2006 6:00 PM CST

Our dearest Ellis is gone.

He was in his proud mama's arms and was kissed by his dada. Ellis held on for us to hold him, he waited for us. As soon as he was comfy in my arms and we sang him his song and kissed him and told him we love him, his heart slowed and stopped so quietly and gently.

Our dearest Ellis is gone and we will never be the same.

The world will never be the same.

Love,
Melissa and Sam

Ellisville residents will gather to remember the strongest and bravest boy in the whole world:

Friday, December 8 - 5:30 p.m.-8:00 p.m. visitation

Saturday, December 9 - 1:00 p.m.-2:00 p.m. visitation
2:00 p.m. Service of Music, Word, and Prayer in Celebration of Ellis's Life

All Ellisville gatherings will take place at Holy Nativity Lutheran Church - 3900 Winnetka Ave N, New Hope, MN. For directions please visit www.holynativity.net or call 763-545-1647.

Flowers are lovely and Ellis stopped to smell them every time. But we are hoping that Ellis will inspire you to give generously in his honor so that other children may be helped:

Caringbridge
www.caringbridge.org

Songs of Love
www.songsoflove.org

Children's Heart Link
www.childrensheartlink.org

University of Minnesota Children's Hospital
www.uofmchildrenshospital.org

Monday, December 4, 2006 9:12 AM CST

Our dearest Ellis is struggling.

Please hold him close.

Friday, December 1, 2006 8:56 AM CST

Hello, all ye citizens of Ellisville.

We had a quiet night! Yippee!

Ellis is a bit more stable than he was yesterday! Yippee!

It's the little things...

I'm positively glowing from having 4 hours of sleep IN A ROW! Yippee!

Here's the attendees at our care conference held Wednesday afternoon:

1 Nurse
1 GI Resident
1 Intensivist Fellow
1 Cardiology Fellow
1 Nephrologist (kidney)
1 Pulmonologist
1 Gastroenterologist
1 Cardiologist
1 Transplant Cardiologist
1 Intensivist

oh yeah, and

1 Mama
1 Dada

oh yeah, and

1 Gazillion Ellisville Fans cheering us on

Here's the overarching theme of the care conference:

We have work to do.

We are not giving up.

We are not slowing our efforts.

We are not out of options.

We have work to do.

We will do everything we can to help his liver recover.

We will do everything we can to care for his fragile heart.

We will do everything we can to support his kidneys.

We will do everything we can to protect his lungs.

We will do everything we can to bring Ellis home.

We have work to do.

The mood in this riverside room is not one of desperation, gloom, or despair.

The mood in this riverside room is one of determination, gumption, and hope.

We will bring Ellis home.

We will.

Melissa, Sam, and the strongest boy in the world

Thursday, November 30, 2006 4:49 AM CST

Ok. Another rough night.

Everything had really stabilized out yesterday late in the afternoon here, especially after hemodialysis was over. No more epinephrine, backed off on the dopamine. Sam fell asleep in the lounge about 1 or so and I took my spot in the chair here in the room about 1:30.

At 2:30 I awoke to the nurse and resident checking blood pressures as Ellis had started to quickly drift down. When they got a reading in the 50s, they called for the crash cart and the all-too-familiar flurry of activity ensued. Unfortunately for all of us, Ellis does not have his arterial line anymore (it stopped working early last week and he had seemed fairly stable since then), so we are relying on cuff pressures which sometimes can be fickle. The docs turned back on his Epinephrine drip and ramped up his Dopamine and were able to get his pressures back in the 80s with some fluid, blood products, and the increased drugs.

Stat chest xray to check for any more pneumothoraces looked ok, no obvious bleeding or change in his appearance/pulses/heart rhythm/lung sounds, and everyone started breathing a bit easier. A lull in the action and I ran down to the family lounge to wake up Sam for the second night in a row. Worst way to wake up your spouse, ever. No matter how gently you nudge their shoulder and set your facial expression to neutral, the first look on their face when awakened at 2 a.m. and your kid is in the ICU is pure panic. These nights are why I sleep in the room each night and Sam sleeps just down the hall (for 2 1/2 weeks and counting...). Ellis continues to be so fragile and Maple Grove seems an eternity away.

Since then, the intensivist has come in from home and tried to put in an new arterial line but Ellis's hands and wrists and femorals are just so beat up that our options are limited. He tried a few times near Ellis's right foot, but no luck.

His pressures are acceptable again but so far still on max dopamine and significant epinephrine. His lactic acid has doubled since last evening, really the only indication from labs that something is not quite right.

Now that the docs have actually left the room and the crash cart is no longer outside our door, I think we might actually try to catch a few more minutes of sleep before all the daily action starts up around 7. Oh, it looks like Sam beat me to it and he's in the comfortable chair. Darnit.

I will write later today about the care conference, I'm afraid my coherent-levels are dropping as I type.

Here's to another hour of shut-eye.

Melissa, Sam, and Ellis

Wednesday, November 29, 2006 10:02 AM CST

Well, another rough night here in Ellisville.

Lower blood pressures as the evening wore on and some playing around with vent settings to try and balance numbers from labs. We went up to the highest rate of dopamine we could, gave some albumin to add volume and seemed to settle out by 2 or so.

Chest x-ray around that time showed a different picture, however, and Ellis began reflecting that again about 5:00 a.m.

Ellis had developed a pneumothorax - a pocket of air between his right lung and his chest wall. His poor little lungs, already so damaged, have gotten beat up on these high ventilator settings. Things became more urgent this morning as he began showing symptoms. His blood pressures dipped dramatically as the pressure of the air pressed on his lung which started to compromise blood supply to his heart.

Everyone worked very quickly and Dr. Tettah, the surgical fellow, rushed in from home to place a chest tube in Ellis early this morning right here in the room. Unfortunately this is exactly the kind of situation we feared - when letting your liver do a test run with out-of-whack coagulation abilities is not helpful. The doctors and nurses flew around the unit getting lots of blood products and platelets and plasma and other clotting factor transfusions as well as restarting Epinephrine, the powerful heart medication to support his heart function.

Chest tube placed, bleeding controlled, crisis over for now. It seems that the chest tube is helping Ellis return to stability the last few hours. He's still on a lot of the Epi drip, but we've tweaked just a bit on his vent settings and blood pressures are more consistent, we'll check another x-ray here soon and see if we need a second chest tube or not (the docs say it was a pretty big pocket of air and accumulated fast so we might).

Meanwhile Ellis has tested positive for C-Diff, a nasty GI virus, and has spiked several fevers over the last 24 hours. He has a large burn on his right forearm from an i.v. that leaked medicine under his skin. A large bruise has developed and continues to grow around his dialysis catheter (in his neck) so it now extends across his neck and down towards his arm and a similar shape on his back shoulder and up on his scalp. He has some serious war wounds and they are multiplying.

[Deep breath in and long sigh out.]

Care conference today at 2:00 p.m. All the docs are eager to discuss immediate concerns, treatment plans, further diagnostic tests (including biopsies, angiography), and more global long-term issues. We have an amazing team of compassionate, skilled, and very involved doctors and nurses and respiratory therapists. Together we will move mountains for Ellis.

Melissa, Sam, and the strongest boy in the world

Monday, November 27, 2006 10:40 PM CST

Well, friends, this continues to be a complicated road for our dear Ellis. Our apologies for not updating sooner since the holiday, but we seem to be re-entering a foggy state of mind with episodes of wild desperation for some relief (some joy!? some peace!? some hope!?) for our son.

Thursday was a tough day, despite the delicious home-cooking from cousin Amy and aunt Julie. Sam and I took turns devouring comfort food and trying to comfort Ellis. Some pretty frightening looking diapers, red with blood from his intestines/bowel and ongoing muscle tremors with an unknown cause. The docs performed what's called an "exchange transfusion" to try and give Ellis more clotting factors to stop or at least control the internal bleeding. They pulled off his blood and replaced it with new red blood cells and plasma late that night.

Friday seemed like a smoother day, though still chasing the sedation/muscle tremor issue and getting a new round of explanations for its possible causes. Ellis found some much-needed relief in his old friend, chloral hydrate.

Friday night turned into a rocky Saturday morning with blood pressure swings and rising troponin levels and lactic acid levels and ammonia levels and INR levels all signaling some new or worsening trauma (another internal bleed?). After some running around by docs, blood transfusions, sedation and paralytic meds, and increased ventilator support, things actually seemed to settle out a bit by mid-afternoon and everyone started to relax again.

Sunday took our breath away.

The GI docs that follow his intestines, bowel, stomach, and liver stopped by Sunday afternoon to deliver some pretty disturbing news. The liver enzymes that we had been watching fall over the last 2 weeks giving us much encouragement about his liver recovery were possibly being misinterpreted.

Our meager understanding of the situation is this: there are 2 ways to track liver function - enzymes or functional tests. The enzymes (ALT/AST) were at a scary high of 8,000 at the crisis point and have fallen steadily and quickly since then to almost normal levels.

Seems good, right?

The functional tests (bilirubin, INR, etc) have been trending the opposite direction, however. The ICU docs have been puzzled about this seeming contradiction, but didn't have a true explanation until the GI team started to be involved.

The GI doc explained that the liver enzymes falling could be either a sign of liver recovery
- or - (and that's the biggest "or" you'll ever read)
they could be a sign of liver death. That is, there are no more liver cells to create or release any enzymes.

Oh. Ok. (This is where the world goes into slow motion and the doc says, "Do you have any questions?" and you scream inside a million all at once including WHY and yet you just shake your head and whisper "no.")

Now the gray fuzzy part is (and there is always a gray fuzzy part with Ellis) that some of the functional liver tests are bad but some are, well, just plain ol' mediocre. For example, Ellis has needed to be on an insulin drip for about the last week to control his blood sugars - high dose steroids can cause this or a pokey pancreas but we're not going to worry about that now ok maybe this is a bad example but welcome to our world - ANYWAY, your liver is the organ that metabolizes sugar so if he had zero liver function, he would actually need to have sugar infusions to keep his blood sugar up rather than us trying to keep it down.

Oh. Ok. (This is where you make some crappy joke about whether there are any parts of Ellis left unscarred except the "family jewels" and then laugh together until one of you starts to cry instead and then you retreat back to fog for the protective numbness.)

Now the additional bummer of the GI consult - Ellis's abdominal ultrasound and CT scan showed some problems with his intestines as well. They are backed up with stool and fluid (probably old blood) and are quite swollen, making Ellis's belly quite distended and uncomfortable. That, in turn, is hampering his ability to expand his lungs even on a ventilator so he has had to be on very high vent settings to keep his oxygenation satisfactory. Those settings make Ellis uncomfortable, which, paired with his huge belly with his big liver and swollen gut are making him quite miserable. So we've been keeping Ellis comfy as we can (which I'm eternally sorry to say is not as much as he needs) with much hugely increased sedation meds and even at times paralytic medications to keep him from moving.

Oh. Ok. (This is when you reach for Ellis for the millionth time, hoping against hope he can somehow be far, far away from this nightmare and still know we're near.)

Meanwhile any urine output he did have earlier last week has dribbled off to near nothing. Hemo-dialysis continues each day (tomorrow will be day 15 of that support).

And meanwhile his heart continues to have what the docs call a "troponin leak" - the injury chemical that the heart cells release, possibly caused by coronary artery involvement in the rejection, another potentially huge roadblock for Ellis's recovery, but only truly diagnosable by doing coronary angiography (which would involve dye, further injuring the kidneys) in the cath lab and a heart biopsy (which has a high risk for bleeding) to check in on the acute cellular rejection of the actual heart muscle itself.

But wait, there's still more.

The GI team wants to take the next couple of days to do a test run of the liver. That is, stop supporting Ellis's clotting factors with plasma transfusions and see what he can do on his own, this (along with some other blood work and additional medications added to our regimen) will hopefully give the team a better idea of how much recovery potential there is. The liver, as you all may know, is the only organ really capable of actual regeneration. You can have only 15 percent of a working liver and it will literally grow itself into a complete and total functioning liver. Amazing. The question at this point is how much functioning liver does Ellis have left and is it enough? The words "liver transplant" have been used in our presence several times over the weekend which, honestly, is just too damn much to even think about. Of course, this "test" is also incredibly risky. If Ellis should develop some sort of internal bleeding, the medical team would have some seriously intense work to do.

Ok. What's next?

So those of you who have followed Ellis's story for the long haul know that it is about this time when all seems chaos that everyone gets together for a "care conference." We're scheduling that with the docs over the next day or two so that all those wonderful medical professionals can sit in the same room and think through all our options for treatment and testing and next steps for our most precious and beautiful son.

Sam and I are exhausted. We can't even imagine how weary our Ellis must be.

We awoke this early morning with weak spirits but deep resolve to continue our unceasing advocacy on behalf of this child of ours. I refuse to accept anything less than absolute heroic efforts to make him well so we can bring him home.

He deserves nothing less.
He has already moved mountains, how can we not try to do the same?

Melissa, Sam, and Ellis

Thursday, November 23, 2006 9:16 PM CST

Sam and I are having a tough time being thankful today.

Did you see that picture?
That is a picture of a child clinging to life.
That is a picture of a child who has spent EIGHT MONTHS of his 2 1/2 years clinging to life.
That is a picture of a child who has fought harder than any human being I know just to be here.
That is a picture of a child that has known intense pain and more fear than I will ever fathom.
That is a picture of OUR child.
Our dearest, sweetest, most beloved son.

I look into his eyes and cannot say I am thankful for any of this. I know he has inspired thousands and yet it is still too high a price to pay. I know he has moved many to acts of love and generosity, but nothing in this world is worth the suffering of a child. I tell him over and over again - I would take it all away from him if I could. I would do anything in the world to trade places with him.

Sam and I watch helplessly this night as the doctors and nurses work to control bleeding in his intestines, as he suffers from uncontrollable tremors from the rising ammonia levels in his blood, and as he continues to need more and more ventilator support as his lungs are somehow getting more calcified. Sam and I wonder at the amount a human body can suffer and at the continued precariousness of his condition. He is stable, relatively speaking - what a difference a week makes, right? He is here, yes, but dammit, he is still HERE in this ICU with tubes in his mouth and neck and groin, not at home in his big boy bed snuggling with mom and reading books with dad.

And yet...

I have to look again at this picture and at the pictures we have hung above his bed. Pictures of his halloween costume, of pre-transplant strolls, of baths and pajamas and swingsets and puppydogs.

These are pictures of a child who has known love every moment of his life, who has never been alone.
These are pictures of a child who has been tenderly cared for by nurses and respiratory therapists and echocardiogram techs and occupational therapists and physical therapists and speech therapists and radiology techs and surgical nurses and cath lab nurses and dialysis nurses and pheresis nurses and residents and fellows and doctors and surgeons.
These are pictures of a child who has so much life yet to live.
These are pictures of a child who has so much strength and so much joy and so much trust.

These are pictures of a child,
our child,
our Ellis,
for whom we are so thankful.

Melissa, Sam, and Ellis

Monday, November 20, 2006 8:21 AM CST

"Everything's Better"

That was the summary of our dear dear Ellis yesterday morning during the doctor's rounds. Sam and I stand on the periphery while all these wonderfully talented and compassionate doctors gather together with nursing staff and pharmacists and respiratory therapists and review Ellis from head to toe. Then they make their recommendations for the day(s) ahead. Usually the resident assigned to each patient makes a quick summary at the end to make sure everyone's on the same page and his statement yesterday was, "Well, to summarize Ellis, umm, well, everything's better!"

Amen to that.

Ellis's liver is better.
~for those of you that are into liver enzymes, Ellis had an ALT/AST numbers of 8,000 a week ago (normal is 0-60ish) and now we're sitting in the mid-100s. Bilirubin is being a bit pokey, so Ellis looks a bit yellow (or sun-kissed!), but that'll eventually turn around, too.

Ellis's heart is better.
~NO epipnephrine to keep his heart beating.
~minimal Dopamine to help it through dialysis, etc.
~done with plasmapheresis and ATG
~from an ejection fraction of 10r less a week ago, to approaching normal, we haven't even had an echo since Friday. Today we'll look again and see what the ol' drum is up to. (Ellis knows his heart is the drum - it keeps the beat and keeps steady rhythm to hold the rest of the "band" together. The lungs are the "trumpets" that need lots of air and sometimes create a lot of gross spit. We haven't come up with a musical instrument for the kidneys yet, but we're working on it.)
~we do need to travel to heart catheterization lab this week sometime to look around, take a biopsy, and take pictures of his coronary arteries. This information will give the doctors a much better idea of what kind of rejection we are dealing with and how to proceed.

Ellis's kidneys are, well, ok.
~while he still isn't making much urine at all (2-5 ccs per hour or two), his creatinine and BUN numbers haven't risen much over the week and have never been as high as they were, say, post-transplant. we're hoping they're just still a bit sleepy and will wake up soon.

Ellis's hands and feet are better.
~Ellis's feet look great. We were finally able to put the oxygen saturation probe back on his toe and revel in their warm, oxygenated pinkness again. His hands and fingers get a bit more pink with every day. There are still a few areas that seem to be the most damaged - finger tips of thumb, index, and middle fingers on his right hand; and the back of his left hand. Hopefully his body is healing from the inside out, but ultimately it is the body's decision.

Ellis's electrolytes are better.
~potassium is getting cleared through dialysis, lactate is falling every day, his liver is finally able to regulate glucose again, and his ammonia is falling near normal limits again.
~which means Ellis is awake! he has times where he is resting and times where he is awake now, for 20-30 minutes at least! While he still looks far away with the medications for pain and anxiety, his big brown eyes look around the room and at us and he can open his eyes if we ask him to and squeeze our fingers and watch his Jack's Big Music Show video. What a difference a week makes.

Ellis's parents are better.
~Getting a few more hours of sleep (me in a chair in the room and Sam in a chair down the hall), eating (and actually tasting!) meals thanks to our families, thinking about next week, thinking about next month!
~We're still reeling a bit, though. It comes out mostly if someone tries to include us in a conversation about the outside world - news, politics, movies, work, etc. Huh? What? Who?
~"What a difference a week makes" has been the resouding refrain this morning as some nurses and docs return to work after a few days away. I in no way want to minimize the absolute miracle that his last week has been, but I also want to scream "What a difference 2 weeks makes!" Two weeks ago Ellis was swinging in his swing at home, drinking orange juice, walking in his walker, talking, finger-painting, and sleeping in his big boy bed. Those two feelings are equal in my heart now. The adrenaline of the vigil is fading and the exhaustion of beginning another ICU marathon, I have to admit, is here. We are thankful and angry all at the same time - is that possible? Anyway, that's where we're at for now.

We'll keep you posted on any cath lab plans or kidney recovery - it's a Monday - new service doc, new specialty docs, new residents - so it'll be a slow news day while they all catch up!

Melissa, Sam, and Ellis

Saturday, November 18, 2006 2:44 AM CST

here are the moments that sustain us...

~Ellis opened his eyes just a bit this evening, yes, both eyes, and looked at me for about 20 or 30 seconds before closing them again.

~Because Ellis's hands are obviously so injured and his feet are starting to appear injured, too, we have Ellis now barely visible on his bed underneath a large inflatable warming blanket called a "bair-hugger". He is surrounded by warmth and is wrapped in a constant hug. I've visualized the air flow warming the blanket and his body is from all of you - your words, your whispers, your sighs are holding him and restoring him.

~There are many churches praying for our son and ECLC included Ellis in their most recent healing service this last wednesday night. During this service they read Psalm 121 - "I lift my eyes to the mountains, from where comes my help?"..."the Lord is your shade at your right hand". They taped this service and we've been playing it for Ellis several times now so he can hear the music and voices and prayers.
In between listenings, the dialysis nurse arrived and began her preparations with the machine parked next to Ellis's bed. As she approached the bed to attach the tubing to Ellis's dialysis catheter, she began to speak to Ellis. "Hi, Ellis. I'm Colleen. I'll be your dialysis nurse today. It's nice to meet you. I'll be here (she touched his arm), right here by your right hand, ok? I'll be watching over you from right here."
We are surrounded by faces and hands and words and acts of love and mercy.

~We are here in the PICU with Sam's cousin Ben, his wife Natalie, and their son, Logan. it has been a surreal co-existence to say the least. What it also has been is a support that we could not have predicted, would not wanted to have wished for, but now are so thankful. A few sentences here and there in the hallways or restrooms or sharing a meal, comparing notes and progress or frustrations and sadness. Please hold Logan close, too, and all children who suffer so much in this world.

~A box of fruit and snacks, a singing pig, a card with some lunch money, your amazing and encouraging and reassuring messages, the countless thoughts and prayers and wave after wave of healing love rolling through and over and in us.

~Ellis's liver has begun to show signs of recovery.

Melissa, Sam, and Ellis

Friday, November 17, 2006 2:29 AM CST

Did you see the day on this message?

Friday.

Wow.

On Monday we heard words no parent should ever hear and Tuesday's dawn seemed beyond our reach.

But it is Friday now!

And Ellis is still here.

One of our challenges this week has been how to manage our expectations, our hopes.

What do you hope for on a Monday like that?
Peace. Comfort. No pain.
What do you hope for on a Tuesday?
Strength to continue the vigil. Assurance that Ellis knows we are near.
What do you hope for on a Wednesday?
Steps toward stability. Songs of encouragement. Courage for days (yes, plural) ahead.
What do you hope for on a Thursday?
Improvement. Talk of next week. Another day like today.

Can you even imagine what we get to hope for on this Friday?

There are so many times every hour of each day that our minds veer between worries and encouraging signs, a balance of sorts, I suppose. Worries of course mean we are thinking ahead and not completely in this moment, but so does having hope, right? It is a luxury to have emerged from the fog of shock and horror - to worry, to hope. Here are a few of our ups and downs of today, well, let's do downs first, then ups -

DOWN: Ellis's blood pressures and overall circulation have been extremely taxed over the last several days. Lots of drugs screaming at his heart muscle to pump paired with the body's own stress response of shutting down blood flow to extremities to save vital organs is causing some very startling changes to both of Ellis's hands and fingers. His left has his arterial line in the wrist, which is compromising blood flow to the hand and fingers and his right is just sympathetically following along. Both are the darkest purpley-black, especially at the finger-tips and icy cold. It is frightening to see.

UP: Remember our blood pressure goals shifting each day, reflecting his own heart function capabilities? Monday's lowest acceptable level was 70, Tuesday 55, Wednesday 60, and Thursday??? 80!!! We were able to keep his blood pressures above 80 during both pheresis and dialysis. oh, and we have been going down down down on all those nasty drugs causing the poor extremity circulation, too! Epinephrine went from a high of 0.22 to its current setting of 0.04, and dopamine from 20 to 6. Plus we've added milrinone back in, a vasodilator, that is helping blood perfuse the tissues and organs. He is so pink, he's almost red!

FUN SIDE NOTE: Ellis's body has chosen to shut down blood flow to the extremeties and non-vital organs (and unfortunately some of the vital ones, too, but we'll get to that). One of the logistical challenges then becomes trying to measure his oxygen saturation levels in his blood. They usually do this (and we did at home) by adhering a little laser light sticker to a toe or finger that somehow tells you how much of the blood is oxygenated. Well, if ellis's fingers and toes aren't seeing a lot of that blood flow, they don't work for this necessary monitoring. Hmmmm...it seems that ellis's body has decided that there is one extremity worth sustaining in times of stress - anyone want to guess?

ok, ok, ANOTHER DOWN: Ellis's liver has pooped out on us. It did this a while back in 2004, too, as did his kidneys. Kidney function we can substitute with dialysis for quite a while if need be, but liver function is a bit more challenging to support. This is actually taking over here as the organ of first concern with the docs. It regulates all of the body's ability to clot blood and right now Ellis ain't got any of those abilities. His gums are bleeding and last night when i leaned in to kiss him on the cheek, some blood came out of his mouth that had pooled there since my last kiss. Sometimes I can handle the theoretical (but not visible) diagnoses more than I can the startling (but relatively minor) indignities that his body has had to endure. Needless to say, one small misstep or bad luck bleed could be devastating.

ANOTHER UP: Ellis's liver is hurt, yes. But his heart function HAS IMPROVED. His ejection fraction number has been in the spotlight this week with daily echocardiograms tracking changes. We've quadrupled our numbers in the last couple of days and it is feeling good. Steady eddy heart rate (a bit of arrythmia here and there but nothing concerning I guess), rocking blood pressures, and well - the word on the street is that this rejection is officially turning around. We just need to make sure the other organs get the memo and SOON.

ONE MORE DOWN: Ellis has been in an ammonia/lactate induced coma since Monday. They actually turned off the minimal sedation he was on to see how profound this electrolyte poisoning was and to stop unnecessary levels of drugs from building up in his system while his liver and kidney aren't metabolizing/clearing anything right now. An EEG test was given yesterday to check brain function and showed "diffuse slowing", not surprising. We haven't seen his eyes since early Monday, we haven't seen even any movement besides a cough during suctioning with no drugs to do that to him. Doctors have shared their concerns with us about the possible damage to his brain from all the low blood pressures, not to mention the soaking its taken with fluid of the wrong chemistry.

but here is one last but certainly not least UP:

Ellis opened his eyes today.

(ok, one eye - the other is swollen shut from all the fluid (he weighs 15.8 kg - he weighed 12.8 a week ago))

He opened it again when Sam asked him to. He is here!

He has moved his arms, his legs (against gravity - kicking up in the air), his shoulders, his head.

He squeezed my finger tonight.

It is enough.

Melissa, Sam, and Ellis

Thursday, November 16, 2006 1:47 AM CST

Look to THIS day.
we have shared another day with our Ellis
a day of many worries, too many to list
a day of much improvement to help balance the fears
a day of growth, action, and power

The bliss of growth,

a day of singing and celebrating and praying and yes, laughing as we share Ellis stories with each other and the medical family surrounding us
a day of building hope and resolve and determination and stability and smiles and courage and conversation about a future

The splendor of action,

a day of powerful medications and plasmapheresis and hemodialysis and continued support of each precious organ system in this little body
a day of holding fingers and rubbing toes and gentle massage and warm water washcloths for bathing and cold water compresses for fevers
a day of decisions big and small for moving forward

The glory of power . . .

a day that has brought us stable blood pressures, steady heart rate, perfect oxygenation, and positively thrilling weans of heart-support medications
a day that brought challenges and our Ellis has moved mountains

Look well, therefore, to this day.

Melissa, Sam, and Ellis

Tuesday, November 14, 2006 11:58 PM CST

In a few minutes, Ellis will have officially made it to another new day.

Oh, friends, family, all of you who love and care for Ellis, this is a nightmare. I have a new fear of sleeping as the shock of re-entry into this reality is so painful. I spend the first few minutes after each attempt at sleep (an hour here or there in a chair in his room - did I mention that we are now in the same room he was in post-transplant for 8 weeks?) dazed (is it July? August? September? why are we here?) and profoundly sad (WHY????).

So instead of sleeping, I will write.

My strongest memory of the whirlwind weekend remains Ellis's struggles Saturday night. His behavior deteriorated from lethargy and irritability into the throes of a body fighting to stay alive. The feeling of quickly worsening heart function that Ellis was experiencing has been described to me as the feeling right before you faint - a nausea, a panicked dizziness, a desperate clawing for solid footing. This was my poor little Ellis for hours and hours and hours. He continued to try and communicate his fears by signing "sleep", nodding when we would verbally repeat it back to him, then he would point to the window and sign "car" and "home" crying when we would try to explain. Ask for water, for milk, for juice, then push it away after a few sips. A million "all done"s were signed over and over and over again. He would cry for me and stretch out his arms for me, "mama! mama!". Then of course I would hold him in whichever way he seemed to need. But I, too, could not provide comfort or take away his pain. So he would push me away within seconds and throw himself back into his bed constantly shaking his head back and forth rolling from side to side pausing only to grab the guardrails for whatever grounding they could offer. A few minutes of sleep, and then the cycle would begin again.

I am so sad that I could not help him that night, and this sadness now seems to permeate everyone around us.

I joked with the nurses and doctors when we first arrived here on Friday that there was this look that everyone had when they saw our familiar faces - pleasant surprise at seeing old friends mixed with pity - greeting and grimace.

Now everyone around us wears a new look when they enter this room - sadness at the swiftness of all this, frustration that there is not more to be done to fix him, and determination to press forward and offer him and us the promise that they will do all they can to save him.

Tonight our families are getting some much-needed sleep after the last 24 hours of vigil and are regaining strength for another long day ahead. Sam and I are set for the night in chairs by Ellis's bed to watch and wait with him again. He has acheived more than was predicted - he is still here. Our families can rest knowing that the minute-to-minute changes and challenges are softening into trends and hourly re-evaluations. This is a gift that Ellis has given us - time. Time to put incredible medical minds together. Time to sing and talk and touch and pray.

The medical team is using this time to treat the rejection through daily plasmapheresis treatments, immunosuppression drugs (specifically ATG), chemotherapy (Rituximab), and steroids (Solumedrol). Treating rejection, yes, but always balanced with supporting his body through these treatments. Plasmapheresis is dangerous for Ellis because of his already low blood pressures. Normally we have been accepting blood pressures with the top number above 80, and aiming for the top number to be closer to 100 as his kidneys get better blood flow and all systems seem to work more efficiently. Monday's treatment we started to accept blood pressures above 70. Today we just tried to keep him above 55, and had much difficulty doing so during the pheresis run. Often they needed to pause the machine so the medical team could give Ellis medicines to recover.

Ellis made it through the plasmapheresis this afternoon, giving us all much encouragement. We had to move quickly, though, to hemo-dialysis as his urine output has completely stopped and his poor swollen body needed help. The size of his abdomen and the skin so tightly stretched across it, the eyelids and face so full of fluid - we have put pictures of him next to him from happier days to remind ourselves of his true appearance.

Dr. Dan managed to place a new line in Ellis's femoral vein this evening and we are so thankful. Though dialysis runs even more risk than the pheresis - that is, lower blood pressures, shifting electrolytes - we needed it badly, so lots of doctors were in and out of the room as the machine started up. The first half of the dialysis run was quite smooth, and we began to breathe easier and converse with the dialysis nurse. About half way, we began to notice arrythmias cropping up and drifting blood pressures back into the mid-50s. A few buttons pressed and the dialysis machine slowed its work and we all waited for Ellis to recover. Then we noticed his work of breathing on the ventilator had gotten noticably different and the team began to suction out his breathing tube.

Things happened so fast, it is hard to know what came when, but Ellis's heart rate dropped 60 points and his blood pressure dropped into the 40s. Nurses and doctors rushed in to coordinate "code" medications and try to lift him back up as well as stop the dialysis and unhook it from him. As soon as it began it was over and Ellis had returned to acceptable numbers. Dr. Lohr has been with us last night and today and she was here again tonight to direct the team and coordinate the response and afterward to reassure us and watch with us as he stabilized. We are so thankful for her care.

Here's an "Ellis moment" for you faithful fans: somehow, after this event, Ellis is now MORE stable. He managed to get himself into a more normal heart-rate and rhythm than he's had since Sunday and to sustain blood pressures so far this night in the 70s. That's our Ellis.

Outside our door sits the code cart while the nurses are again trying to bring down a rising fever; Ellis's body is compensating for all the trauma by limiting blood supply to arms, legs, lips, nose - we have returned to our pre-transplant blue period; the fluid continues to build in his body with each hour; his platelets are disappearing the moment he receives them; his ammonia is so high that he is essentially in an electrolyte-induced coma; and his troponin is on the rise again.

Inside we catch our breath, gingerly smile at our son and each other, shake our heads at his continued ability to throw curve balls, and give thanks for another gift of another day with Ellis.

Remember our rule?
Do NOT look behind - whys and regrets and looking for blame and causes and what could have beens are without value and make us too sad.
Do NOT look too far ahead - what have we done to this already-battered body? is it reversible/sustainable for years of life? will we stabilize him now only to lose him later? - these questions have no answers right now and can weaken our resolve to fight on.
This moment this day this night THIS NOW is all that we have and all we can know.

Ellis is here. He is with us. It is enough.

Melissa, Sam, and Ellis

Friday, November 10, 2006 4:01 PM CST

UPDATE #8: Tuesday 3:08 p.m.

Ellis has amazed us again this day. He is here and he is hanging on while the doctors and nurses continue to try and turn around this rejection. He has survived another round of plasmapheresis today with many people coordinating his care and urgently working and lifting him up each time he starts to fail. He is receiving more steroids and chemotherapy now to try and remove the root cause of all this chaos, his immune system attacking and damaging his new heart. In the meantime we are preparing to start hemo-dialysis, but in order to prevent any interruption of the powerful medications sustaining his life, he needs yet another dialysis catheter placed. Dr. Dan, the man who saved Ellis's life by placing pulmonary artery stents, should arrive within the hour to place this line at the bedside and then we will proceed with attempting dialysis. Ellis has blood pressures lower and lower with each passing hour, all that can be safely done for him is being done. Amazing work from amazing doctors and nurses- we are so blessed to have them caring for our son. We are at his side, Sam and I, his four grandparents, his aunt, and he is being sung to and talked to and kissed and caressed at all times. He has not responded to us with any movement or eye opening since yesterday and we hope beyond hope he is dreaming of swingsets and puppy dogs as he deserves nothing less.

UPDATE #7: Tuesday 5:24 a.m.

Ellis is holding on with all his might. He is surrounded by grandparents and his auntie Rah-Rah who are holding his hand, singing and cheering him on. A few scares throughout the night, but Ellis has been comfortable throughout. Doctors here and those who have come in from homes are trying to save our little boy and so far he is allowing them to continue their work. Every hour Ellis can stay with us is another hour of hope. Thank you for watching with us this night and into this new day.

UPDATE #6: Monday, 8:22 p.m.

Ellis is critical and the doctors have told us he may not make it through the night. Please hold our most wonderful son and his brave brave spirit in your prayers tonight and give him strength.

UPDATE #5: Monday, 2:04 p.m.

Lower blood pressures mean more drugs to try to support his heart. Unfortunately every time they try to add these drugs, his heart beats uncontrollably out of rhythm. Therefore, no dialysis today. Dialysis can lower your blood pressures when you lose volume, and Ellis is still putting out some urine and all the docs think he can hold his own overnight while we try and make his heart less irritable. So we are about to begin plasmapheresis, a process similar to dialysis where they circulate his blood through a machine that takes out his plasma and replaces it with a donor's plasma. Ellis's plasma contains all the antibodies that are doing their best to reject his new heart. This process will take the rest of the afternoon and we're hoping to possibly even see some improvement in heart function later today. He will also receive some major steroids and other extremely potent immunosuppression drugs and need more i.v.s placed to get all these drugs in. It is a busy day and everyone here is working as hard as they can to get Ellis back from this scary brink. Thanks for your messages and prayers. Ellis did open his eyes a few times today at the sound of our voices and we are treasuring every moment and trying our best to reasssure him through all of this.

UPDATE #4: Monday, 6:32 a.m.

Arrythmias, dropping blood pressures, and rising stress on Ellis's heart means we're moving to hemodialysis as soon as it can get set up. He is very fragile and his stability is precarious at best.

UPDATE #3: Sunday, 11:04 p.m.

Ellis was too tired and his heart too weak to keep up breathing on his own, so he has been put on a ventilator. Please please please hold him close. Sam and I are bewildered at the speed of this whole horrible mess and exhausted from all the fear and grief. Thank you for your thoughts and prayers and messages, we will update tomorrow when we know the next steps Ellis will take.

UPDATE #2: Sunday, 6:48 p.m.

Ellis is very sick. His heart function has deteriorated with this rejection to the point that he is in kidney failure. Many many doctors have been working all day (2 1/2 hours and 7 sticks to get labs this morning then 4 1/2 hours of trying to get a line in his neck) with furrowed brows and focused minds trying trying trying to get some answers and most importantly some fluid off his poor little body so he doesn't have to work so hard just to breathe. We are so close to being back on the ventilator and just escaped it this afternoon by a whisper. Ellis is doing his darned best to stay afloat, so to speak, but it gets exhausting breathing 90 times every minute. He has not been himself since last night - writhing in his bed, not able to keep his eyes open very long, moaning and yelling for mama then pushing me away if I get too close, he is very sedated now but continues to twitch and moan and yell under the drugs. It is horrible. I want Ellis back. His electrolytes are all out of whack - way too much potassium, not nearly enough sodium, needing insulin injections, etc - that combined with the steroids can induce some psychosis, the docs tell us. Just tell me it will go away and soon. We're not sure the rejection is under control and not sure we can get by without kidneys any longer so they did place a dialysis catheter in his neck today. We have not used it for that purpose yet, just as a central i.v. for some strong heart and kidney meds, but may have to revisit that soon, it can also be used for another blood-cleansing procedure to help with rejection. Lots of decisions to be made through the night and tomorrow. We'll try to keep you posted.

UPDATE #1: Sunday, 11:12 a.m.

Ellis is ok at the moment, but his kidneys are not. Whether it is the rejection itself or the treatment for rejection that are making them shut down, we don't know. We just know that things are getting serious around here and we need your prayers.

ORIGINAL MESSAGE: Friday, 4:01 p.m.

Well, fiddlesticks.

All was going along swimmingly at the Bergstrom house, it was! it was! Ellis was on less and less oxygen even to the point of hours off of it all together.

Then a couple of things cropped up on Mama/Dada radar this week - heart rate a bit higher than normal, breathing a bit noisier/faster even if we turn up his oxygen, and a bit faster weight gain. Hmmm...

We were heading into clinic at the U on Thursday morning to get some labs done anyway, so I called ahead to see if our cardiologist could just take a peek and maybe do a chest xray, echocardiogram, etc, just to rule out any thing major - maybe it was an ear infection? a new tooth? These things could be normal kid stuff, too.

Well we got the star treatment at clinic - labs, xray, echo, dr. visit, and got sent home with more updates to come.

Thursday afternoon we got the call that the echocardiogram didn't look completely stellar so the discussion would be about possible biopsy. Hmmm...

This morning we got another call - a second and third look at the echocardiogram showed more concerning things, so could you have Ellis here to be admitted to the general peds unit, oh you know, somewhere around noon and we'll plan things from there.

Gulp.

Then another phone call as we were packing his favorite books and doing the last couple of dishes - the blood work from yesterday came back with some very concerning numbers, could you get him here NOW and bring him to the peds icu.

Damn.

Here's what's concerning - some measurements and pictures on the echo show a less fabulous heart than he had even 2 weeks ago at his last clinic appointment. Then the blood work - 2 tests in particular - BNP and Troponin. Both can indicate basically a heart that's under some stress, troponin is a chemical that your heart muscle cells release when they're damaged or broken like in a heart attack or other sort of injury. Normal is less than 0.04, and that's what Ellis was 2 weeks ago. Yesterday's lab work came back at 0.66. Today's lab work came back at 3.29. Definitely going in the WRONG direction. BNP is another stress indicator and 2 weeks ago Ellis was at 339, still higher than your average 2 year old, but most of them ain't had no stinking heart transplant, either. Yesterday's level was 2,300 and today's was greater than 5,000 (that's just where they stop counting).

Double Damn.

So - the name given to the possible/probable/most likely cause of all this stress?

Rejection.

Double Super Duper DAMN.

Sorry for the rough language, but we're all feeling a little rough around the edges.

Anyway, he's in the ICU and getting some massive doses of IV steroids. They will also support his heart function with some IV Milrinone, a med he was on the couple of weeks before transplant to reduce the workload on that darn heart, keep it happy and willing to cooperate for a long long long long time.

They'll be keeping a close eye on him and make sure we have caught this early and slammed those over-active immune cells before they caused any big damage. All the docs think he looks great and is feeling great, which means we did catch it right at the very beginning, otherwise he would be feeling darn sick and in a more scary place medically if we would have waited much longer.

Hopefully as they repeat labs and echocardiograms throughout the weekend, we will see some quick progress and make plans for heading back to the grove. Fingers crossed.

We're just across the hall from our cousin warrior Logan Bushaw (Sam's cousin's son), who is battling battling battling to get out of here and get home to his twin brother and big boy bed and all that jazz (www.caringbridge.org/mn/bushaw). Too many sick kids in this world, too many in this hospital, too many in this family, too damn many.

We'll keep you posted on our record-setting fast recovery!

Melissa, Sam, and Ellis

Wednesday, November 1, 2006 3:37 PM CST

Three quick things for your Halloween week:

1) Check out the photo album for our turrtle-rrific two-year-old! Ellis learned a lot about giving and sharing as we reverse trick-or-treated at the hospital/clinic on Monday and gave away all this yummy candy to the docs and nurses, and then had to give MORE away at home the next night! It took a bit of convincing ("Mama, MEEEEE!!"), but hopefully our only child won't get too spoiled (yeah right, too late!).

2) Ellis is feeling great, sleeping pretty darn well in his big-boy bed all things considered, and wanting to eat and drink more more more! We're having a bit of trouble actually keeping the stuff he drinks and eats to stay inside, though, and are hoping to get hooked up with a tummy doc soon to figure out what's going on (ok, GI doc - Gastro-Intestinal). Anyway, a very minor bump in the road, we hope, and we're distracting him with juice-popsicles in the meantime to cut down on the guzzling while still entertaining his taste-buds.

3) MOST IMPORTANTLY OF ALL, Ellis has a special request for all of you cheerleaders and prayer-ful-folks and white-light-senders -
Sam's cousin Ben and his wife Natalie have two bee-yoo-tee-ful (ok handsome) boys, Logan and Owen. Logan and Ellis have a few things in common, namely, a pediatric cardiologist, a thoracic surgeon, and some pretty cool scars.

Logan was born with a heart defect and has had surgery at the University already in his young life and needs another one to start living pink. That surgery is scheduled for TOMORROW, NOVEMBER 2nd at 7:00 a.m.

You can read all about Logan and Owen's adventures and follow Logan's super-duper (and super-speedy!) recovery at his caringbridge website - www.caringbridge.org/mn/bushaw -

Go, Logan! Go, Logan! Go, Logan! Go!

Here's to a heart-healthy November for all!

Melissa, Sam, and Ellis

Wednesday, October 25, 2006 9:56 PM CDT

Three months ago - a new heart.

Two months ago - still very much on the ventilator, in the ICU, and faced with news of rejection.

One month ago - in the general kid's unit, on high-flow O2, figuring out staph infection, breathing, and fluids.

Today - happy sleepy dreamy at home.

Here's a "parade of homes" tour of our humble abode and abode-related activities:

1) Garage. Yes we do get out every once in a grand while. Ok, well, just to clinic, but hey - the minivan has to get used sometime! Ellis LOVES to ride in the car and even hasn't really minded our frequent trips to the U so far. Here's the amazing part - he has had labs drawn three times with 1 or 2 pokes each time and has not shed a SINGLE TEAR any of those times. What a superstar. He has to watch the lab tech's every move and does do quite a grimace, but somehow manages to stuff his emotions and save them for therapy later - ahhh, the Bergstrom way.

Meanwhile, nothing but good news from clinic - in fact, our next visit to the transplant team is ONE MONTH from now! Wowsers! That'll be right before Thanksgiving, for goodness sake. We'll see pulmonology and endocrinology in a couple of weeks and a few lab draws in the meantime to keep tabs on everything.

Steady-eddy, keep on trucking!

2) Entryway. Our outside walk-days are just about done, it seems. We've managed a few quick ones on the brisk days (see the rosy-cheeked pic in the photo album) and re-discovered some tree-lined trails here in the Grove. Ellis giggles at leaf-crunching and squirrel-chasing, so we'll try a few more before the snow flies (eek!).

We do try to get out at least once a day to at least go get the mail from the mailbox. We usually see the mail truck from the kitchen window and then Ellis starts signing for hat and coat and mittens and saying "go! go!" and we sing the mail song from Blue's Clues while we trek down the driveway ("here's the mail it never fails it makes me want to wag my tail when it comes I want to wail MAIL!").

3) Kitchen. So here's another miracle, in case you were wondering where our weekly installment was -
ELLIS CAN SWALLOW LIQUIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Water, Milk, Orange Juice, Pink Lemonade, Beer (ha!).

Ok, the sippy cup is a bit too much yet, but he can do amazing volume with a syringe! Or a bottle, but the syringe is cuter. (Needle-less of course!)

He has drank so much milk he got to be "off the pump" today for SEVEN HOURS and tomorrow he has earned five.

I don't know how he's compensating or healing or whatever is happening - but somehow he has figured it out.

Amazing.

His voice is still raspy, but darn tootin' loud. He is most definitely TWO YEARS OLD and completely in charge. His favorite word combos are "Mama GO" when he wants me to do something for him and "Mama MEEE" when he wants to do something for himself. Good Lord, where did this spunk come from? He is officially a toddler!

Other kitchen activities include finger painting, cooking (he loves to stir!), and sweep (which is good for all the messes from the first two!).

4) Family Room. We're having a grand time playing and hanging out with all the toys and stuffed animals that seem brand new after you've been gone for three months. We are diving in to therapies in the next couple of weeks, all in our home through the local school district and Courage Center. We'll have to wait until after cold/flu season is over before we head out to any therapy gyms. We have a few small tweaks in the fine motor area, some talking and eating "areas for growth", and work work work to build up his stamina and strength so he can motor around even more independently than he could before. Though it's a bit hard now with the oxygen tank and feeding pump and sat monitor, hopefully those will fade into the background soon (only on 1/8 liter of O2 now!).

5) Office/Piano Room. One of our new activities every day lasts about 30 minutes and involves me playing the piano while Ellis plays the crash cymbals. (Little kid version, but still an ear-full!) He will usually play along on about 3 or 4 songs, but then he'll contentedly listen/read books/play puzzles while I practice a bit more and then politely let me know when he's had enough ("mama - all done"). It feels so good to play again after months away, I just have to stay away from anything sad sounding or lullaby-esque. Ellis always says "mama" in a sad whimpery tone and his face is starting to crumple. So - I'm sticking with upbeat or at least louder/faster! It has to go with crash cymbals!

6) Bathroom. WE HAD A BATH!!! Yippee! Ok, just to clarify, Ellis has been bathed since transplant, but not the submerged kind, just the sponge, not nearly as satisfying. Like a fish out of water he is, so we try to limit the bath to 30 minutes, but he still could play longer. He has a beach ball and a duckie and Elmo-bubbles and his mom and dad's full attention - who could ask for more??? (See photo album for sudsy grin!)

Oh, and we are going to attempt to re-start potty training.
Yikes!

7) Bedroom. Ladies and Gentlemen, here is our mediocre parenting confession - Ellis never once slept in his crib at night. Ever. When we got him home from the hospital he slept in a cradle next to our bed, then the Pack-n-Play, then as his need to be closer and closer to us increased, in our bed. For 2 1/2 years.

As I type these words it is 10:29 p.m. and Ellis has been sleeping in his NEW big boy bed in his OWN ROOM for 2 hours straight without a peep.

Fingers crossed!

He picked out the sheet from our college-collection of twin-size bedding - bright orange and hippy-dippy flowers! - added his Elmo pillow, horsey pillow, sports-themed pillow, kitty cat, 18 pacifiers strategically scattered throughout the bed, one safety gate, one nightlight, and one baby monitor transmitting any restlessness into our bedroom and VOILA!!! - a big boy bed!

Took a nap in there today and hung out there this evening and didn't even flinch when we read books and said goodnight and shut the door. Just rolled over and fell asleep. (Maybe the 30 minute bathtime bubble fest helped wear him out!?!)

That's our home, our house, our life! We're loving it! We're even starting to get on each other's nerves a bit here and there just like ol' times - Sam and I snapped at each other in the most dangerous of spousal activities - putting together his new bed and safety gate - and Ellis and I were arguing today over the fact that he was drinking more orange juice than milk (earth to me - step back and appreciate the miracle that I'm even having this argument!)...life is good!

Thanks and thoughts this day are with the family who made all this possible.

Melissa, Sam, and Ellis

Friday, October 13, 2006 8:47 PM CDT

I honestly have felt like I could not find the words to describe

bringing our son home,

watching his eyes light with recognition and joy,

being hugged so tightly by those pudgy arms over and over again in his home-coming glee in between pointing and toddler squeals as he sees his toys, his room, his swing,

sitting on our couch with my husband in the most silent silence listening to the quiet of Ellis sleep in the baby monitors,

sharing a cup of early morning coffee in our pajamas,

and watching Ellis open his eyes for his first morning in his safe, peaceful, and love-filled home.

The only experience to which I can relate this last week is a honeymoon. (Sorry, Mr. B's students.) We have been cocooned in our home, relishing every second of just being together (as well as sheepishly oblivious of the outside world!).

We are profoundly content to just be. To be together, to be home, to be quiet, to be loud, to be alone, to be on the couch, to be outside, to be inside, to be sleeping, to be awake, to be eating, to be cooking, to be cleaning, to be staring into the frig and wonder what's for dinner, to be washing clothes, to be HOME!

Together.

In some ways it is amazing how quickly we adjusted. The old rhythms of things just took right over - everything seems as it should be.

Ellis has absolutely BLOSSOMED in this place - from the moment he realized we were home, he has been chatting up a storm, dancing with every passing tune, pushing himself physically to be where he was before, and sleeping so wonderfully without any of the tossing/turning/crying fits of hospital nights. Here's some comparisons of Ellis one week ago and Ellis today:

THEN: in the hospital, Ellis could stand with our support and perhaps take a few steps while we did the weight bearing and held him up around his torso.
NOW: Ellis can walk unsupported in his walker from one end of the house to the other. He's winded, but exhilarated.

THEN: Ellis was a bit shy about his raspy voice at the U, we would have to cue every word, asking for each syllable.
NOW: Chit-chat, chit-chat! He'll squeal with delight, respond to Elmo's questions, yell out letters he sees, or make funny noises for our entertainment.

THEN: Ellis would have a bite or two of yogurt, applesauce, or pudding. Meanwhile, Sam and I would forgo beverages or hide them in the corner of the room and quickly sneak a sip of water or soda when he wasn't looking.
NOW: Ellis chows down on cheese, spaghetti-o's, crackers, pretty much anything but liquids, which are still a bit beyond his swallowing skills. Good thing is, though, he somehow understands that and we are enjoying eating together as a family.

THEN: Ellis was on 2 liters of O2 at the hospital or the high-flow system.
NOW: Ellis hasn't needed more than 1/2 liter over the last several days, and most times is on 1/4 or even 1/8 liter. We've gone to hi-flow only at night, and are experimenting with weaning that off now, too.

That, Ladies and Gentlemen, is absolutely a miracle.

His chest x-ray has been described with the following words by medical professionals:
"worst I've ever seen"
"shouldn't even be breathing"
"looks like someone who should be on a ventilator"
not to mention the huddled whispers of the x-ray techs when we went in to the outpatient lab on Monday as they reviewed the film.

Once again, Ellis has overcome seemingly indisputable medical evidence.

Ah, yes, medical. We are still definitely medically high-maintenance, despite the strides of the week. 19 different medications, 47 doses a day, given at 15 different times a day does keep us entertained. A few tweaks here and there as the week has passed just to keep it interesting.

Ellis went into clinic at the U on Monday to see the transplant team, chest xray, echo, ekg, labs. We had gone home with the handy-dandy dialysis catheter, so labs were painfree. Sam and I were in charge of dosing his one i.v. antibiotic and flushing/locking/dressing changes of that line, which was a bit stressful, too. Great report on Monday, and the decision was made to take out that line to prevent any infection. So Thursday we had a date with the pediatric sedation center at the U. Before you could say "We love Propofol", the line was out and Ellis slept through the whole 5 minute procedure and got an Elmo sticker to boot. Later that day we saw docs from pulmonology and endocrine to touch base and get their smiling blessing to keep on keeping on and home again we went. Ellis broke out into applause when he saw our mini-van! Home, sweet home.

Our profuse apologies for our recent disappearing act, we're still wandering with goofy smiles and awe-filled tears of joy. We are here - we are happy - we are HOME!!!

Melissa, Sam, and Ellis

Friday, October 6, 2006 10:55 PM CDT

We

are

HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Sunday, October 1, 2006 8:50 PM CDT

Hello, faithful Ellis fans!

Ellis is back!!!

That’s what Sam and I keep shaking our heads and saying to ourselves as we get reacquainted with the Ellis-personality of pre-transplant days. He is way funny, way into bodily function noises, trouble-maker to the extreme, chatty, demanding, impatient about more books more! but cooperative about blood pressure tests, dancing, active, animated, and ticklish!

Daily wagon rides and swinging time and leaf-admiring time and walking time and playing time have added up to one happy kid.

Yippee!!!

Here’s how we got there, medically speaking:

Friday morning – CARE CONFERENCE! – with pulmonology, cardiology, transplant team, social worker, discharge (!) coordinator, nursing and us. We got lots of very specific plans in place and some general touching base about the big picture – i.e., what is his current picture, what do we have to do to go home, and what kind of follow-up/long-term picture are we looking at?

Here are some highlights:
1) Got a new diuretic plan. We’re trying a different drug and it so far seems to be working. Hopefully today was our last day of i.v. diuretics and we can be completely on oral meds by tomorrow. So far so good. This is the one piece that seems so small, but is keeping us in the hospital because his lungs are oh-so-sensitive to even the tiniest extra bit of fluid. We definitely want to get this completely managed here before we go home, spending an extra day or two to fine-tune would be way less trauma than turning around and coming back in a day or two after getting home. So here we are, fine-tuning away.

2) Antibiotics. Sounds like we’ll be staying on the i.v. antibiotics for another week and then we’ll decide one way or another about this line and when it will get taken out. We’ve also been able to basically determine that we could pull the line without putting him back on a ventilator, so the longer we wait, the better he’ll do breathing under some sedation. We CAN go home on i.v. antibiotics. (Are you sensing a theme?)

3) Respiratory Status. Ellis needs quite a bit of help to breathe. We will be going home (there's that theme!) on high-flow oxygen supply and we will be hauling tanks and tubing wherever we go and throughout our house for many months to come. His lungs are complicated in diagnosis and prognosis. There is scarring and calcifications in both upper lobes and the middle right lobe. If his nasal cannula providing the extra oxygen gets bumped out of his nose, he begins to lose his blood oxygen levels within seconds. And this condition, more than his transplant immunosuppression drugs, will result in his being extremely sheltered for the foreseeable future. If he were to contract a runny nose or a cough or congestion, we would be back in the hospital, possibly on a ventilator. Working on way-less-than-full lung capacity leaves you with zero reserve. Even if his weight goes up a bit faster than his body can process he has to gasp for air, just think if it were an active infection. Scary stuff, but important to face fully and accept this long road ahead.

4) Vocal cord stuff. We got some answers, or at least some more questions on Friday when the ENT doc dropped by again (at our request) to look one more time at Ellis’s vocal cords. What he found was disheartening. While his right vocal fold is moving normally, there is no movement in the left one. Paralysis was the word the doc used, a scary and permanent sounding term. What hope the doc was able to provide was this: as that muscle atrophies from lack of nerve impulse, it will naturally return to midline, and then the right vocal fold will be able to meet it, allowing some pitch to return to Ellis’s speaking voice and hopefully allow some swallowing, too. That is probably what we’re seeing already with his improvement in eating pudding textures. We will follow up with him and see where this takes us – there are surgical options down the road, but again, lots of risks and nothing we really can do right now until Ellis is stronger and more stable. Sam and I are still processing what this means and having a hard time accepting not hearing his voice for months to years and probably not the one he had before, not to mention the pain of not allowing him water or milk or ice cream or popsicles or…you get the idea. Definitely something we are sad about, but are trying to follow Ellis - he is able to enjoy life immensely even here at the hospital without those things and will continue to push forward and strengthen the muscles still working and compensate in any way he can.

5) Endocrinology. Ok this part is a bit confusing for everyone, docs included. Turns out Ellis has something called hyperparathyroidism, which involves your parathyroid glands. (Different from the regular ol’ thyroid, of which he has hypothyroidism anyway, taking synthroid for that.). Too much of the PTH hormone swimming around can cause many different symptoms, almost none of which Ellis actually has (like kidney stones for one, OUCH!, I know too well that he does not need that going on). One symptom that he does have, however, is calcification in the LUNGS! Can you believe it? While it is definitely not the only thing going on in his lungs, it might just be a contributing factor. Anyway, looks like we’re in for some bone scans, etc, to make sure the rest of his bones are doing a-ok, but all this might take a while to sort out.

6) Meanwhile Sam and I, by our request, have taken responsibility for most of his day-to-day care here at the hospital. It saves on trauma for Ellis, privacy for us, and frankly a lot of miscommunication if we just do it ourselves. We have all the meds from the pharmacy and are drawing up dosages and administering them 10 different times a day. We manage his oxygen supply, monitors, feeding pump - everything except the i.v. antibiotic, which we'll learn how to do in a class tomorrow! We are also doing all his vital signs every 4 hours and reporting those to the nursing staff. Pretty sweet to be this independent, it will make the transition to home oh-so-smooth.

7) Oh yeah, didn’t this kid have a deal going on with his heart or something? Phew! – it seems to actually get lost in all the other medical stuff, but we are TEN weeks post-transplant and starting week 12 of being impatient, oops, I mean in-patient. We did 14 weeks back in ’04, so we’re still under our record and would like to keep it that way. Meanwhile his heart looks great and Ellis is his zesty zingy self, more and more every day. Check out the new pics!

A lot of medical detail, thanks for slogging through. We veer between completely overwhelmed, absolutely heart-ache-filled for the challenges this poor kid has still to endure, and in a flash we are thrilled/laughing/renewed by Ellis, our hero, he continues to amaze us each and every day. Thanks for hanging on – here’s hoping for a homecoming soon.

Melissa, Sam, and Ellis

Thursday, September 28, 2006 1:54 AM CDT

Oh, friends, another whirlwind of ups and downs these last two days. We have mostly retraced our steps and are wiser for the detour, but are still reeling a bit and definitely exhausted.

Monday night I wrote about two "minor" bumps in the road - infection in his i.v. and ongoing concern about respiratory issues. They did seem minor at that point, along with other creeping minor lab values (hemaglobin down) and numbers (weight up) and symptoms (lethargic) and signs (puffiness) that all taken independently were not cause for concern, but together provided us with a chaotic Tuesday.

In the wee hours of Tuesday morning, Ellis experienced some episodes of de-satting, basically his oxygen levels in his blood (which we monitor 24/7) would drift down into the 70's or 60's (normal is 100 or darn near close) and remain there for a concernedly long amount of time (10-25 minutes). Especially when someone is getting 2 liters of 100xygen blown in their nose, you wouldn't think he should be having these problems. In fact, we did a sleep study to check for apnea a few nights ago, but he's a steady breather, asleep or not.

Anyway, the docs came in and out of our room during the night but were never actually in the room when it happened, only paged during the event and then arrived in time to see him back to pink. So it was mysterious and as we don't have a nurse in the room or even necessarily someone always responding to alarm monitors at the desk, no one was really able to tell what was happening, exactly when, or anything to do differently to prevent them. Foggy sleepy mom here - all I could do is try to rouse him a bit from his sleep and ask him to cough or take big breaths, I didn’t think to track resp. rate or other signs, so I wasn’t a lot of help either.

Restless night and a bit concerning. So I called Sam just before dawn to let him know before he left for work and he decided to just come to the hospital and see for himself what had been going on. As the docs rounded between 8-10 a.m., Ellis was still sleeping. In fact, he had been sleeping pretty much straight through since 4 p.m. on Monday afternoon. By late morning, Ellis was noticeably puffier in his eyelids and was unable to be roused from sleep for more than a few minutes at a time, and if we sat him up he wouldn't/couldn't even hold his head up, much less his trunk. He was working harder to breathe, audibly gasping for each breath, and breathing faster with each passing hour. As the docs made their decisions for the day's plan and stopped back in, we were visibly upset and pleading with them for some strong action and even asking them to transfer us back to the ICU as he was becoming unstable and we just weren't receiving the level of care we thought he needed. Oh, I forgot to mention, too, that he had woken up a few times to vomit, and then choke and sputter on that since he can't swallow very well or handle liquids. Oh, and he spiked another temp at 12 noon of 101.5. All this with no medical professionals required to be in the room and a flustered nurse trying to manage 3 other patients. It was unacceptable.

Our pleas and tears and fears were repeated to everyone ANYONE who would walk in the room or even walk by in the hallway. Finally we talked to the right person who contacted the right nurses and docs who appreciated Ellis's history and fragility and started to make things happen. We saw our surgeon's nurse practitioner, the nurse manager, the senior resident on the unit, the cardiology fellow, pediatric resident, cardiology resident, phone calls to and from the transplant team, the ICU attending physician, our primary nurse from the ICU, another cardiology fellow, another senior resident, respiratory therapists, and our nursing was changed to one-on-one for a few hours and two-on-one for the rest of the day and night. It felt like a revolving door of specialists and stethoscopes but most importantly it felt like Ellis was finally back on the radar screen and getting the medical attention he needed.

They added some serious diuretics to his buffet of meds and monitored his vital signs oh-so-closely. He received another transfusion of red blood cells as well, the carriers of oxygen in the body. Ellis slept through it all, peeking his swollen eyes open a bit in the afternoon, and opening them for a few looks around at the busy-ness in the evening when they were less puffy. We were still discussing being transferred to the ICU even at 11 p.m. with the doctors, the concern was that Ellis would get too tired to keep up and if he did he would need immediate medical intervention, something the ICU is set-up for, not the general floor.

About midnight or so, his face began looking better, his respiratory rate slowed slightly, his gasping became less audible, his oxygen saturation levels began to stabilize, and the docs were starting not to frown so much when they listened to him. Then - lo and behold - about 1:30 a.m. he opened his beautiful brown eyes and whispered "Elmo!"

Everything was going to be ok!

So we settled in for some middle-of-the-night Elmo watching and slept on and off, as he would wake and want books or songs or t.v. He had been sleeping since 4 the previous afternoon, so I suppose he was ready to play! Of course, Sam and I weren't exactly well-rested, but were energized by his smile and plain ol’ RELIEF. Ellis had once again held on while we and the medical team stumbled in his care.

During the chaos of Tuesday afternoon, it had been decided to take him to the O.R. Wednesday morning and take out his i.v. as the new temps were concerning for everyone. He had blood cultures taken from both ports of this i.v. Saturday, Sunday, Monday, and Tuesday with only one on Saturday coming back positive for staph infection. But we couldn't take any more chances.

SO...(the saga continues for a bit more thanks for still reading!)...we awoke Wednesday with news that his case would be at about 10:30 a.m. so his tube feeds were stopped at 3:00 a.m. Anesthesia was in discussion about how to avoid re-intubating him if at all possible (while realizing it most likely would be necessary) and knowing we would end up in the ICU after the procedure. Still under discussion as well was whether or not to place another line while we were in the O.R. anyway, like another PICC line for lab draws, antibiotics, diuretics, blood products, etc. Quite a few of the MAJOR details were not quite decided, so we were feeling a bit uneasy. Then dawn broke and here’s the break-down of the morning:
7:00 a.m. – we are ON! Major details yet to be decided – ummm…when will that be?
8:00 a.m. – we are OFF! “Throw your body across the bed and don’t let them take him” – removing the line may not be necessary we now hear
9:00 a.m. – we are now definitely off – nursing comes in to restart the food
9:03 a.m. – we are ON! Stop the food!
9:17 a.m. – we are OFF! Restart the food! We won’t pull the line today, but probably tomorrow.
10:30 a.m. – no sign of any O.R. anesthesia team showing up to whisk him away, so we breathe a bit easier.

Long story short (ok ok it’s not short), another day of the revolving door. We’ve added the infamous Infectious Disease Team back on board making some recommendations about the line (surprisingly not necessarily to pull it but rather treat it and make sure through some testing we’re not missing anything bigger, unless of course we see any more temps or have any more positive blood cultures). Since we still seem to be back on the radar screen with nursing, the peds docs of the unit, and the specialty teams, we are getting lots and lots of “face time” with the white-coated folks. Endocrinology is back in action, too, as Ellis’s thyroid function is a bit askew once again (it got off track post-transplant as well) and some funky lab values are keeping them busy. I started googling hyperparathyroidism but after 10 minutes had decided that either Ellis was suffering from some rare disorder involving the adrenal gland or I should stop googling so I chose the latter. We’ll let the professionals do what they do best – investigate and ruminate.

Notice I did NOT say communicate.

So…We’re going to have a care conference! The transplant team social worker is pulling together our surgeon, transplant doc, transplant coordinator, pulmonologist, and possibly other specialties to actually sit in the same room at the same time WITH US and make a plan of action. We did this once in 2004 when Ellis’s future had become so foggy and so complex that we needed to make sure everyone had heard each other and that decisions were being made as an entire team for the entire kid. It is an amazing experience.

Not sure when that will get scheduled, but I can tell you we will not let them do any major procedures till we’ve all agreed on what the next best steps are.

The next best steps toward home, that is.

Here’s the greatest thing of all – Ellis awoke this morning somehow more refreshed and more renewed and full of smiles and signs and raspy chatting and boundless energy! He requested to do his work-out today – taking a few assisted steps THREE different times and a wagon ride and some sitting in his high chair, eating yogurt, coloring, throwing things on the floor, and general mischievousness. We cannot even begin to imagine where he gets the determination, the energy, the spirit, the courage, the resilience that shines through him with each smile and thumbs-up and applause cue! Many many many kisses and hugs and high-fives and snuggles and laughs and eyes wet with tears of love, joy, awe.

We’re exhausted. Did I mention that already?

Ok, ok, it’s almost 2 a.m. and I should be sleeping, but just had to write this all down as a processing tool, and to let all you Ellis fans what the heck has been going on. Thanks for checking in so faithfully and we’ll let you know about any whirlwind-esque activity, but hopefully things will get sorted out and we’ll have some quiet days of small tweaks ahead.

Melissa, Sam, and Ellis

Monday, September 25, 2006 10:54 PM CDT

please sing along - I know you will!

happy two-month heart birthday to you
happy two-month heart birthday to you
happy two-month heart birthday dear Ellis
happy two-month heart birthday to you!

AND MANY MORE!!!

And many many many many many many countless gazillions more.

We think of the family that gave our son this gift today and every day.

Life in the general kiddies unit keeps plugging along. A lot less face-to-face doc time which can be frustrating, but we keep pushing and asking and reminding and making lists and ok nagging so we can continue moving forward and not languish here too terribly long. Whenever I get a bit ancy/frustrated/discouraged, I try to remind myself that we have come SO FAR - from the brink of despair to breaths of fresh air in his lungs!

Thazzright! Ellis has made leaps and bounds of normalcy and strength in the last few days - amazing stuff - wagon rides, swing sets, bowling!, sitting up unsupported, even - drumroll from Ellis - supported standing and today: THREE STEPS!!! Ok, with us holding him up and doing most of the weight bearing, but he WANTED TO GO WALKING!!! After three steps he wanted to lay in bed, but hey, so did I! It was hard work and hard to watch him work that hard, but he is so determined and courageous and tough and fierce and still likes to cuddle in my arms for naps. Who could ask for more?

Ok, I could. I want him to be able to talk, eat, run, jump, BREATHE without oxygen, play with his cousin without fearing infection, sleep in his own home, grow up and ride the school bus, live a long wonderful life and not have to endure any more pain, fear, or sadness.

Is that too much to ask?

Slow and steady slow and steady slow and steady.

On the medical news front we have had a few minor bumps in the road -

~staph infection in his only remaining i.v. (that darn hemodialysis catheter that has to be removed in the O.R.). luckily for us we haven't had any true fevers or general miserableness to suggest that the bacteria have spread, so we're on heavy-duty antibiotics for a while and hopefully have stopped it in its tracks.

~back on some high-flow nasal cannula to try and figure out some of the breathing issues. pulmonology seems stumped/confused/unsure/unclear of his prognosis and treatment plan. incredibly frustrating so you can bet we'll be furiously advocating to get them to make some forward-thinking decisions, not just wait-and-see type ideas. in the meantime we've been able to convince them to get rid of some of the breathing "treatments" that have been ongoing for weeks with no clear benefit - namely nebulizer meds and BD's (where they pound on his chest and back to loosen secretions). both ended up being wrestling matches and tearful fits but now they're gone gone gone. next idea, please!

Enough bumps! Hopefully we're due for some smooth sailing the rest of the week. Oh- I almost forgot - check out the NEW PICTURES in the photo album (including a great pic of him "smiling" - his version is squeezing his eyes shut - strange kid)! Don't let the medication-inspired unibrow and massive steroid cheeks and undercover mask look fool ya - that's our Ellis!

Happy two-month heart birthday!

Melissa, Sam, and Ellis

Thursday, September 21, 2006 9:12 PM CDT

We are officially out of the ICU!!! Almost 2 months to the day, we have been moved out of intensive care and to the general kids floor.

And wouldn't you know it, I have mixed feelings! (Thus the movie reference above about men in prison for too long who don't feel ok about being released.)

Obviously it is a testament to his stability and progress and improvement that we are no longer ICU status, and yes, it is one step closer to H - O - M - E, but I just worry about this darn kid so intensely so much of the time, it matched very well with intense medical care. Anyway, we've seen some friendly familiar faces so far here and that helps a ton.

I have had some renewed appreciation for the long road ahead, as well, or renewed fears is perhaps more accurate.

~Ellis is so weak, he does have cerebral palsy with low muscle tone issues, and now the combination of major surgery, major complications, being in the hospital bedridden for 2 months, and major drugs ain't a-helpin! He gets a bit stronger every day, but major acheivements include holding up his own head and torso by sitting propped up by pillows, or 2 attempts so far standing holding on for dear life to Sam and I and with so much fear and panic in his face - not running, jumping, playing like most 2-year-olds I know.

~The repeated swallow study did show some improvement so he is now able to have thick consistencies like applesauce, pudding, and yogurt so we enjoyed some of each today. (And I do mean we - someone has to lick the spoon!) But he still has only raspyness for a voice and still begs for water but chokes over the smallest droplet of liquid. So a bit of progress, yes, and something to celebrate, but still a source of frustration and even grief over what he's "missing out on" that other 2-year-olds get to do everyday without a second thought.

~Socialization will continue to be a big loss for Ellis and us, too. To prevent any rejection of his heart, Ellis is on some pretty heavy-duty immuno-suppression drugs. This protocol will make the most common activities dangerous for quite some time yet, especially till we hit that golden day of 1-year-post-transplant without any more rejection episodes. Till then, he will be extremely sheltered - especially through cold and flu season - with his damaged lungs and weakened state a normal sniffly nose for most people could land us back in the ICU on ventilator in the blink of an eye. If he's exposed to the chickenpox or mono or other fairly common viruses, we could be fighting for his life. It is so scary.

With that in mind, I'm sure most of you can figure out that visitors to the hospital are really not an option. We just can't take the chance that somehow he would get infected with something "from the outside world." I'm sure you all understand. In fact, when Ellis went from his room to the swallow study or from the ICU to here, he had to wear a mask - not fun to convince him (Sam and I tried empathy masks, but he was still pretty torked). Nurses and doctors have to wear sterile gloves and gowns after thorough hand washing before they can even enter his room!

It might be a while, too, before you see him at church or having play dates with your toddlers or at large family gatherings, it is just too dangerous and would require too many health screenings by me - the newest Nurse Ratched on the block. Let's think spring, ok late spring...

So thanks to all of you who have dropped off food or have swung by for a quick drop-in visit, but I think we'll have to be cold and cruel and protect our little one in a bubble a few more months, here at the hospital and at home, too. HOME!

Can you believe I just typed that?

We're getting there, baby, and I can't think of a better place to be bubbled!

With love and stuff but NOT from the ICU! (Woo-Hoo!!!),
Melissa, Sam, and Ellis

Monday, September 18, 2006 10:33 PM CDT

When we were at home, we had this little ritual before bed - here's a play-by-play as he would snuggle under his blanket and do one last look to me -

Ellis (pulling his pacifier from his mouth to show me): "Nana"
Me: "Got your nuk?"
Ellis: "Yeah.
Ellis (checking and squeezing his soft white stuffed animal) "Meow-meow!"
Me: "Got your kitty-cat?"
Ellis: "Yeah!"
Me: "Well, then, LIFE IS GOOD!"
Ellis: [huge satisfied smile, close eyes, zzzzz]

Well, folks, LIFE IS GOOD!

Ellis is smiling and laughing and hiccuping and giggling and pushing buttons and pulling syringes and generally being a trouble-making IMpatient two-year-old. Yippee!

We're still in the ICU, but waaaayyy low on the totem pole of medical needs. Rumors are in the air...but I will not type those words "out loud" until we're safely tucked in on the other wing. Shoot! Did I just give it away? We'll see - tomorrow's a new day and who knows what it will bring.

This morning, I posted a medical "To-Do" list of procedures, tests, and med adjustments we have to make before we can get out of the ICU. It had 8 items that needed to be addressed, if not completed, and 4 of the 8 got checked off in the first 12 hours!

1) Biopsy - sounds like the plan is to wait wait wait before we put Ellis through anything major. How long, when exactly, etc etc are up in the air but not this week for sure. So nothing imminent here.

2) Lines - we still have his RA i.v. line and his Dialysis Catheter that's not being used, as well as his temporary pacer wires. The only one actually getting used is the RA, the rest are just hanging out waiting to get yanked. Unfortunately, taking out that big dialysis catheter would be a trip to the O.R., so the docs are avoiding that for now, too. "Back away from the baby" seems to be the mantra - don't do anything to mess up what he has accomplished these last weeks.

3) Swallow Study - follow-up repeat of the test is scheduled for this Wednesday afternoon. Hopefully his vocal cords and other airway-protector muscles have gotten stronger so he can be allowed thickened liquids or pudding or similar things. We will see...

4) Vocal Cord Study - no voice yet much at all. We'll probably wait a few more weeks before we would repeat this test. I'll keep asking, though, until I hear some melodious pitch to that little raspy "mama".

5-8) Meds. Couple of i.v. meds got switched around today to oral versions (=going home versions!) and we just have THREE I.V. MEDS LEFT!!! We're so close!!!

We're also trying to figure out his med schedule. Right now he gets meds at 6 a.m., 8 a.m., 9 a.m., 10 a.m., 12 noon, 2 p.m., 3 p.m., 4 p.m., 6 p.m., 8 p.m., 9 p.m., 10 p.m., 12 midnight, 2 a.m., 3 a.m., and 4 a.m. for a total of 57 doses PER DAY!!!

So we have quite a bit of work to do here at the ol' hospital, but things seem so much less intense even over the last few days. We're completely back on the regular nasal cannula (no high-flow) on 2 liters and breathing treatments three times during the day, none at night. We have successfully retraced our steps from the past week of two steps back and are better for it. Ellis is sleeping through the night from about 8:30 p.m. till 6:30 a.m. and thus, SO AM I! I haven't seen my house since July 10th, but I hear it's a big mess, so I guess I'm not missing anything (besides my big comfy bed and my own mostly-clean shower, but hey who's counting?!).

More news soon, we promise - till then -

Melissa, Sam, and Ellis

Friday, September 15, 2006 4:41 AM CDT

We have entered (again) the big bad world of withdrawal. Poor little Ellis, his body got so used to all those drugs keeping the pain away for so many weeks and now they're gone. The docs tried their best to wean gently, but it seems all that "progress" of last week is what caught up to our kid this week.

One of the fellows on duty Tuesday night was able to finally name it as withdrawal and start some Methadone and go back to some earlier levels of sedation meds to treat the symptoms. We are grateful for her vigil that night with us and her advocacy at rounds the next morning.

Let's review the symptoms of physical withdrawal:
fevers - check!
high heart rate - check!
loose stools - check!
extreme agitation - check!
insomnia - check!

So now our bee-yoo-tee-ful boy has been peacefully sleeping since Wednesday afternoon.

Yep, pretty much straight through.

Now it's Friday morning.

Ahem.

Ok, so we might have overshot the treatment plan a bit.

In fact, Ellis has been SO comfy he hasn't been really interested in taking deep breaths or coughing. Oops. So we are back on the high-flow nasal cannula and his blood gas tests are running a bit on the concerning side.

Sigh...

So now we're trying to back off again, knowing it will be a fine balance, almost impossible to hit exactly on the mark each day.

In the meantime, we had an echocardiogram today to look at Ellis's heart. The symptoms of rejection can also be - go ahead and guess - fever, high heart rate, loose stool, agitation, insomnia - so wanted to make sure we weren't missing anything bigger. But all looks fantastic! Yippee! We still need to head down to the cath lab for another biopsy, but no one seems to be in a hurry. We'll give Ellis some time to recover from this latest bump.

I'm sure a quiet weekend ahead with slow moves on sedation and getting back off the high-flow and waking up more and more - calmly - getting stronger with each day. So there might not be any news for a little while - a-ok with us.

For your entertainment, though, a few stories of Ellis and his sensitive side-

Paul the mandolin player has returned several times to serenade us. The last time he was in a few days ago, Ellis was wide awake and content and able to jam along with his cool rhythm instruments (sent by an adoring fan)! He played some mini-maracas and a jingle stick and clapped along (and politely applauded at the end of each number, of course!). What a sight. Singing and dancing and jingling with joy.

Ellis has been a bit moody, to say the least, partly due to the high-dose steroids he was on and the low-dose steroids he continues to be on. We were warned of sullen or angry behavior, but Ellis seems to have chosen a different version (of course). He is moved to tears by the smallest gesture, song, or word. A few examples:

~saying "bye-bye" to ANYONE. it started with paul the mandolin player which we thought was adorable. then it was the nurse at the end of a shift one day. then it was the respiratory therapist after a breathing treatment. then it was the janitor ("environmental services technician"). now it's pretty much everybody. we're now asking people not to say good-bye to Ellis or wave or ask him to wave bye-bye back - he just gets so sad!

~some of the videos we've been enjoying ad nauseum are the baby einstein animals that feature classical music. all goes well till Canon in D (during the ducks) or "Going Home" (from Dvorak's New World Symphony- during the giraffes) comes on, then he's a mess - he's so sensitive! He also received a turtle/aquarium/music toy from another adoring fan that plays the Beethoven Pathetique Sonata 2nd mvmt and he sobs. Oh, if you haven't noticed Baa Baa Black Sheep, Twinkle Twinkle and the Alphabet Song are all the same tune, right? Well if you sing Ellis the sheep or abc's he's ok; if you sing twinkle, he gets misty-eyed. That's the musically-sensitive-over-stimulated-emotionally-exhausted soul of our son.

~we don't talk about water, milk, pop, food, car, home, swings, trips to the zoo, or anything that reminds him of where he is now and where he would rather be. What used to calm him in the fog of all those meds weeks ago now is a bit hard for this kid checking back into reality. I was reminiscing about the night he went in for transplant and the poor kid was so hungry and thirsty since we couldn't let him eat or drink before surgery. We promised him he could have some milk soon - then chuckled and said well, a few days, anyway. Who knew it would be 8 weeks and counting...

Now don't let these stories break your heart into a million pieces (ok maybe for a bit), but rather see the awesomeness we see - this kid is one bright bulb, one smart cookie, one rock star of a recover-er. He still knows his ABCs and numbers and the same party tricks and jokes he loved before - he still laughs hysterically when the fart machine goes off - he gives thumbs up IN HIS SLEEP - he claps for himself everytime he coughs - he identifies the colors of his different medical accessories - all in his raspy, wheezy voice.

We are so thankful for all you Ellis fans out there who have sent toys and stickers and cards and money and well-wishes and prayers and messages. While we are not very good at humbly accepting charity, we are thankful for all your gifts. A few large organizations of people have been so supportive of us these last weeks - especially Holy Nativity Lutheran in New Hope and Edina Community Lutheran in Edina. Thanks for your generosity.

We would be remiss to not also thank the staff at St. Michael-Albertville High School, Sam's colleagues, for organizing and advertising and hosting a spaghetti dinner fundraiser for us (see the link below for more information - actual attendance not required!). Sam and I have never thought twice about rearranging our lives so that Ellis is NEVER alone and advocating ceaselessly for him so that he receives the best care both here and at home. It takes energy we didn't know we had, and admittedly, it takes financial resources. Our house has had to undergo a tad bit of renovation to be clean and healthy enough for Ellis (out with the carpeting in with laminate flooring, out with moldy siding/windows in with new - gulp!) and I am on unpaid leave from my jobs while Ellis recuperates, however long that may be. We are blessed with amazingly supportive workplaces that continue to grace us with their flexibility and compassion, and we are blessed with the helping hands of relatives who have dedicated hours of labor to getting our house ready. We are surrounded by so much good and so much love and so much light. Thanks to each one of you.

Melissa, Sam, and Ellis

Wednesday, September 13, 2006 8:40 AM CDT

E...E is for eeking down on meds and drips and i.v.s looking toward getting outta here some time this season. We're down to one drip (continous i.v. infusion) and only a handful of i.v. scheduled meds. Most things are put in his handy-dandy feeding tube which means they can sure be ones we do at home! We also said adios to our PICC line yesterday, so we're down to a measly 2 i.v.s. We also switched from the high-flow O2 system to a regular (home-able!) nasal cannula and we're down to 1 liter of support and the BD treatments (pounding on his back and chest to loosen secretions) are down from every 4 hours to only 3 times a day! Forward march!

L...L is for low maintenance. We moved out of our large suite across from the desk, the room of crisis-management, and lucky for us for those 7 weeks, the room with the best view. Now we're in a tiny set-up down the hall and we even SHARE a nurse with the kid next door. And most of those nurses have been floats or traveling nurses, as Ellis is no longer putting the intense in intensive care.

L...L is for light at the end of the tunnel. We can see it and the more of it we see the more of it we want. The impatience level is rising and we keep pushing pushing pushing to make sure everyone is moving us ahead to home as quickly and safely as possible.

I...I is for infection. Unfortunately for Ellis, he's been battling some fevers all weekend and through yesterday. Our T-Max (highest temperature) was 102.5 and he has been tres miserables. The good news is that it seemed to ebb last night and we haven't had an official high temp since then - hopefully we're in the clear.

S...S is for sleeping and swallowing. As in none. Ok, well, not none, but we're averaging about 3 hours of sleep per night (in 2-3 separate intervals) and 1 or 2 hours of napping per day. This has been pretty consistent for the last week. Ellis is sooooo tired as you all might imagine, but can't seem to stay sleeping for more than an hour at a time. He is also sooooo desperate for water or milk, neither of which he can have because of the results of that swallow study. ENT did look at his vocal cords and they are NOT paralyzed, but they are sigificantly weakened/injured and are not able to close - thus no voice, and no ability to swallow anything (not liquids, not pudding, nothing). We are so sad and frustrated about both the sleeping and the swallowing, as is our brave little warrior. He has been through so much and now to not enjoy life as much as he had been - he just seems so sad. Hopefully the docs will figure out some solutions SOON.

That's all I can muster with the fog of sleep deprivation. I do have some wonderful anecdotes of Ellis's sensitive side but those will have to wait till I get a good nap...here I go...zzzzz

Melissa, Sam, and Ellis

Saturday, September 9, 2006 4:23 AM CDT

Another rest-less night here in the PICU, but we both slept earlier in the evening for several hours, so it seems mutually agreed that it is time to be up. Minor detail, the sleep-schedule thing. We'll work on that later...

I'm not a superstitious person or anything, but I try not to celebrate things too soon, fearing murphy's law, jinx, whatever. So, of course, since our "bye-byes" to blood products and fever spikes - we've had both - I take full responsibility. Just a few red blood cells to pink him up a bit and a few low-grade temps to get everyone scurrying around again. I guess he doesn't like the docs and nurses to relax too much (or Sam and I).

In the good news department (and not just no news), we hit the golden "one week off the vent" mark and are still going strong. So strong, in fact, they've been able to wean off the high-flow oxygen from 4 liters down to 2. Now my understanding is that 2 liters isn't even considered "high-flow" anymore, just the regular ol' nasal cannula 02 supply, which means we are getting darn close to portable. And the best part (or the worst) is that his chest xray still looks awful! Strange, but true.

One of our adventures this week included a "swallow study". We traveled down to radiology to take some x-ray movies of Ellis while he drank things of different consistencies. All of us had been noticing that, while Ellis really enjoys water on a sponge, it sure makes him cough a bit. Hmmm... What we saw on the x-ray confirmed our fears - Ellis is aspirating, getting the water into his lungs. Even thicker liquids, while not directly going into his lungs, would build up on top of his epiglottis and sometimes sneak down his airway when he coughed. Basically his epiglottis and vocal cords and other airway protectors aren't quite up to the task yet. They just don't react fast enough or Ellis can't slow down his still-labored breathing enough to actually swallow correctly. The other concerning thing is that Ellis still doesn't have any pitch to his voice - he can mouth words, cry, make animal noises, but all you can hear is air and raspy-ness - we're getting really good at reading lips.

The action plan to resolve these issues involves weaning off more sedation (maybe his airway protection will wake up and smell the coffee!) and strengthening his whole body with continued good nutrition (through his feeding tube) and more and more exercise as he can tolerate.

Now to give you an idea of where Ellis is at, his physical therapy exercises include reaching oh-so-shakily against gravity to touch a stuffed animal or book or hand held maybe 6-8 inches above his chest as he lays in bed. If we're feeling like he's having a good day, we'll have Ellis sit up in bed, using his trunk muscles to support himself for a few minutes at a time. He got winded just sitting up in a stroller (we didn't actually go anywhere, just parked it next to the pumps and monitors and 02), so we had to put him back to bed after about 10 minutes.

Lots of rehab and restoration and healing still ahead.

If his voice or swallowing isn't stronger soon, we might have to call in the ENT (ear nose throat) specialists to come take a look. I just KNEW we didn't have enough teams involved!

After all he's been through, it just breaks my oh-so-battered heart to deny him even water or milk. The risk of him aspirating some liquid and choking or getting some bacteria in his lungs and ending back up on the ventilator is just too much right now. Everytime he mouths "wa-wa" or signs for water or milk, we just try to distract him with a book or game and promise him "later". We're hoping for sooner...

Long long long road ahead. We are in that strange place of being frustrated with that forecast and yet incredibly profoundly thankful for the chance to walk it with Ellis at all. Long long long road ahead - together!

Melissa, Sam, and Ellis

Tuesday, September 5, 2006 10:48 PM CDT

On these "slow news days", it is sometimes helpful to remember that there are celebrations to be had in the absence of things - here are a few examples:

~Ellis has not needed any blood products for many moons. His platelets, which gave us a bit of teeth gnashing for those first weeks post-transplant, have been steady-eddy, as have his other clotting factors and hemaglobin. I have found myself casually losing track of these numbers in my notes from day to day or blithely answering "yep" when a nurse points out the wonder of healing. So here is my wow, way overdue. Bye-bye hematology team!

~Let's hear a cheer for those oh-so-resilient kidneys! They take a beating and keep on peeing! For that we are thankful. Creatinine and BUN numbers, too, have lost their seat of honor in the notebook as they continue to hang within normal limits and I stop hanging on each decimal point shift. Bye-bye renal team!

~No fevers, no white blood cell spikes, no mysterious exotic animal exposures - Bye-bye Infectious Disease team!

~With 4 days off the vent and still going strong, it's time to do another tube-check and revel in the zeros:
1 GJ feeding tube
1 high-flow oxygen nasal cannula
3 i.v.s (RA, Dialysis catheter, PICC)
0 Arterial line
0 PA line
0 IJ line
0 chest tubes
0 ventilator tube!

That's all the amazingly wonderful no-news from here. Thanks for tuning in.

Melissa, Sam, and Ellis

Friday, September 1, 2006 2:21 PM CDT

UPDATE #3: Monday, 6:33 a.m.

Ellis has slept most of the last 24 hours and I, for one, am thankful! He has his days and nights totally mixed up so we've been hanging out from early evening till 10 a.m. and then watching him sleep from 10 a.m. till 6 p.m. I think we've got that turned around a bit now - he slept all day yesterday and most of the night last night (and thus me, too)! He woke up at 4 a.m. and tapped me on the shoulder (since I was snuggled in right beside him!), pointed at the t.v., made the sign for "music", and I asked "Do you want to watch Jack's Big Music Show?" (his favorite program). And he smiled and gave me a raspy "Yeah!"

What a way to start the day.

He's napping again and I'm watching the sun rise. New week, new docs on service, new set of plans for getting us further down the road of mending. We'll let you know what lies ahead.

Happy Labor Day! Thanks to all the laborers who have given our son hope and health.

UPDATE #2: Saturday, 9:05 p.m.

Breathing, coughing, snuggling, napping, watching Elmo, sleeping, coughing, breathing, sipping water sponges, brushing teeth!, more coughs, and more beautiful breaths...

Things are going swell so far here on extubation day 2. He's been sitting up in bed a lot today and playing with flash cards, puzzles, and even playing a few notes on his plastic recorder! It's fun AND helps build breathing muscles all at the same time!

We've had fun hanging out in the new "big boy bed" and will again tonight, I'm sure. Hope you all enjoy your long weekend and your last few days of summer. We sure are.

UPDATE: Friday, 9:33 p.m.

Still truckin'! Breathing like a champ and working hard to cough up the "ickies". He's napping peacefully right now and when he wakes up we'll do a quick sponge bath and then (drum roll, please) move him from his crib into a BIG BOY BED!

Partly because he's a big boy, but mostly because then I can crawl in and snuggle with him!!!

Sweet dreams to all...

ORIGINAL MESSAGE: Friday, 2:21 p.m.
Ladies and gentlemen -

Ellis is extubated!

(Again!)

The docs pulled that nasty tube about 1:45 this afternoon and so far so good. Ellis is propped up with some pillows in bed watching Elmo and sucking on his pacifier (a.k.a nuk or nana).

He's on high-flow nasal cannula - 4 ltrs of 60 percent 02 - to keep him pink and happy.

Ellis is working hard but seems relatively comfortable at the moment and has a nice strong cough to clear some of the junkiness in his sickly lungs.

We are at his side cheering him on and giving him pep talks. If you recall we were extubated last time for 4 days, with problems starting to appear after the third day. So this will not be a free-and-clear success story any time soon, but rather a marathon of comforting and coaching and advocating with the docs so nothing that they do gets in the way of his determination.

Long road ahead...hopefully not too many bumps along the way. We'll keep you posted with every curve.

Melissa, Sam, and Ellis

Wednesday, August 30, 2006 6:22 AM CDT

Good morning, Ellisville.

Our little man is still trucking along his own path and own schedule. Nothing dramatic in these days, just a few tidbits to share:

1) We have stopped an antibiotic and the "ampho-terrible" anti-fungal medication as no cultures have come back positive for anything. His kidneys are saying, "Aaaahhhh!"

2) Ellis has made a few people jump around (ok maybe just Sam and I) with some minor arrythmia episodes (brief strings of SVT, isolated PACs for those of you medical types) the last few days, nothing terribly worrisome as his blood pressure was never affected. It sure makes us stare at that monitor, though. Ellis still has temporary pacemaker wires in his heart and taped to his chest, just in case he would need some help - pretty darn handy, I'd say.

3) Ellis is on four "drips", or continuous i.v. infusions: milrinone (eases the workload of the heart), bumex (diuretic), fentanyl (pain control), versed (sedation). Versed is also known for its amnesia properties - hopefully Ellis won't remember a darn thing of this whole adventure or this room where we've spent the last 5 weeks (and counting!), he'll just wonder where his parents got all their gray hair!

4) Our cardiologist did look at the biopsy samples and talk with the pathologist yesterday and, unfortunately, agreed with his assessment that these "monocytes in the perivascular area" do constitute rejection. So we are making some changes to his anti-rejection medications. The biggest change is switching from cyclosporine to prograf last night and we will also add another drug to the mix today. All of these drugs have various side effects (including cancer), but as the doc said, "we'll have to worry about those down the road, right now we need to GET him down the road." We will also definitely need a follow-up biopsy at some point, the docs are discussing when that will be.

5) Meanwhile, we are still waiting to get a clear sense of what is going on in these darn lungs. It was a busy day in the ICU here yesterday and luckily none of the scurrying and hurrying involved us. Today, hopefully, we can track down pulmonology and talk through the range of possibilities for treatment, prognosis, etc. A brief chat with the intensivist last night confirmed a bit of what we thought - Ellis's lungs look "bad" or "crappy" (actual medical terms from actual medical professionals!). But "amazingly" (another medical quote), Ellis doesn't need a lot of oxygen through the ventilator, he doesn't need the ventilator to do a lot of work, he just needs the pressure from the vent to help him keep his lungs open. What that will mean for trying to extubate again is still not totally clear to us, but I guess it is not clear to the docs either - I don't know if that makes me feel better or worse. Perhaps today's conversations will bring more information and a clearer picture.

6) Ellis is on the Atkins diet! Or South Beach! I'm not sure what this new plan should be called, but they have switched around his formula so that he has less calories from carbs and more from fat. The theory is that his lungs won't have to work as hard to exchange the CO2 with O2. Fascinating relationship, isn't it? Maybe that will be the new marketing idea for a whole new set of diet books.

7) Speaking of diet plans, Ellis has managed to downsize his bottom! Yes, ladies and gentlemen, it is official - when Ellis entered this room for his transplant he wore size FIVE diapers. Now he wears size THREE!

That's the news from Ellis island!

Melissa, Sam, and Ellis

Monday, August 28, 2006 8:24 PM CDT

5 weeks since transplant prep
7 weeks since arriving at the hospital
~we want to go home!~

Here's an update on Ellis from head to toe:

Head - What a trooper. He has been so comfy with this semi-new sedation cocktail and it is so great to see. Just last night and today he's been awake even more, calmly asking for water and Elmo (the 2 things needed to sustain life, right?), giving thumbs up and high fives and waving. He also gets very appropriately annoyed with medical caregivers when they've over-poked their welcome - he'll angrily wave his arms back and forth, simultaneously doing the sign for "all done" and eliminating their access for their stethoscopes. Very amusing!

Face - Ellis is most definitely in the predni"zone". He has packed on the beefcake cheeks and even sprouting a wee bit of the darker unibrow look. Those massive doses of steroids are catching up to him and he is pumped up. We're weaning right now a bit, but that process will be determined by the lungs, so we might have a little "moon-faced" boy for quite some time.

Heart - We're still waiting for a re-review of the biopsy results. Our beloved transplant cardiologist returned from vacation today and wanted to look at the specimens herself as she was a bit unsure of the pathologist's reading. So a follow-up biopsy is on hold for the moment while she does some investigating to see if, in fact, this whole "monocyte in the perivascular area" does constitute the Big R Word. We'll be happy if it doesn't, but even if it is (nebulous at best), we will be amazed at the kid who mysteriously found a way to get some steroids on board.

Lungs - Ellis traveled to CT today for a full-body scan. Partly to look at his lungs again, and partly to look for any missed infections anywhere else. No infections were found, but his lungs actually looked worse on this CT than the last one. Hmmm... The word being tossed around this evening is "calcification", or scarring from a previous injury or infection. We won't talk to pulmonology till tomorrow, but we understand the initial treatment for that to be steroids - check (thank you ellis and your perivascular monocytes). Of course, we're not sure of the severity of the problem, the percentage of his lung fields that are affected, reversability, prognosis - you know, all the big questions that will keep us up tonight. Hopefully we'll find out some more answers tomorrow about what this new term might mean. Mostly we'll just keep watching Ellis, I'm sure. Learn from him how this will play out now and down the road.

Arms - This is where most of his meds are going, where his i.v.'s are. Meds have been kind of an adventure lately with some interesting conversations between this googling mom and the medical team. I might be overfunctioning a bit, but I'm proud (terrified!) to say I've caught two meds after they were ordered by docs, but before they were given - that, if they had been given, would have caused us more problems than they were worth - drug interactions, allergic reactions, etc. It's a bit scary to be the one raising the red flag (and even more scary to be right!), but it reminds me how important it is that Sam and I are here and how blessed we are with job flexibility and support-system so we can be here 24 hours a day. All that said, the general trend for meds these days is less less less every day and that can only be good good good.

Tummy - I have forgotten to let y'all know that Ellis has been on full tummy nutrition (as opposed to i.v.) for several days now! Yippee! He's getting all the calories a 2 1/2 year old should need and they're all from yummy formula going into his tummy (ok, jejeunum). It can only help his strength and healing and "pumped up"-ness.

Toes - Pink as ever!

Melissa, Sam, and Ellis

Friday, August 25, 2006 11:34 PM CDT

A fun story for your weekend-

The other day when Ellis was in the cath lab for his biopsy, we were getting the update after the procedure from the cath surgeon in the family conference room. We were interrupted in our conversation by the receptionist who told Dr Dan that he had a phone call. Of course we followed him out to the desk and held our breath as he nodded and furrowed his brow and said "I'll be right in." He indicated to us that Ellis was having a bit of trouble stopping the bleeding from his site where they accessed his vein and that he would go in and lend a hand. We were to stay there and they would let us know when all was well and when Ellis was about to head back upstairs. No problem, about 10 minutes or so.

We waited.

About 40 minutes later, I called upstairs and meekly asked, "Is Ellis there yet?" When the charge nurse said that the cath lab hadn't even called to say he was on his way, my stomach dropped and Sam and I were sure he was having out of control bleeding and frantic medical interventions were happening a few hallways away.

Finally, as I was about to charge the door and scream through the maze of beige hallways for my son, the friendly [smiling!] faces of our nurse, RT, and fellow opened up the lobby door and asked if we were ready to walk with Ellis and the crew back upstairs. "What!?! Everything is ok?" we asked breathlessly...

Turns out the only problem was a Code Brown, Pediatric Team, Stat!
Poop everywhere!!! TWICE!!!

Good ol' Ellis has managed to have "blow-out" diapers at least once each of the last 3 trips to the cath lab! I guess he's trying to tell them something.

Unfortunately, Ellis will get a chance to maintain that record too soon as we have another trip to the cath lab in our very near future.

Last night when they let us know the biopsy results, the exact words included "preliminary report." Today we got the final analysis from the pathologist.

The samples of Ellis's new heart that they examined did, in fact, show signs of rejection.

It is not your typical signs and cells of rejection, a type not even graded on that 0-1-3 scale that we had been prepared for. As Ellis likes to do, he is again taking his own path, I guess. The cells that they found are not typical of acute rejection or actual active attacking of the new heart tissue by his own body, but rather a certain type of white cell most often associated with chronic, long-term inflammation (like arthritis, for example).

The treatment, though, remains the same - it is a sign of rejection and it cannot be left to progress. Massive amounts of steroids that will cripple his immune system so it will leave that new heart alone have been administered to Ellis tonight, one dose tomorrow night, and a final dose on Sunday night, with a trip to the cath lab for a follow-up biopsy on Monday most likely.

[Tears spill over, anger-curses under your breath, more tears, hold Ellis's hand, go find the docs and ask 17 more questions, come back and kiss his forehead, get a hug from the nurse, more tears, stare out the window, hold his hand some more, one more hot wash of tears, deep breath in, long exhale]

So here we go. We've spent the last hours processing (see list above), so we're starting to think again and interact with the world around us again and try to make sense of this again.

Now I'm not one that would usually make lemonades out of lemon, I must admit, but there is an interesting side story going on about those darn lungs.

Still nothing has grown from a single culture all this time (we even repeated the bronchoscopy today for one more look and one more swab for more testing), and while outright acute rejection might have been a cause of his problems, this nebulous version of heart rejection is not.

However, the other theory that's been tossed around this week for his lungs is some sort of chronic inflammation or ongoing scarring process from a previous infection or even that darn re-profusion injury.

And the treatment for that?

High-dose steriods.

The bad news would be if there is an active infection that we've missed, the major amount of steroids he'll be receiving would theoretically leave that bug to rage unchecked by his significantly weakened immune system.

However, if it is an ongoing "fibrosis" pattern, the high-dose steroids will hopefully rein in the rejection behavior as well as clear the lungs up significantly all at the same time.

Ellis does have quite a history of finding mysterious ways to direct us and the docs in his medical care and we're hoping against all hope that this is one of them.

Please join us in a toast with your tall glasses of icy cold lemonade:

Here's to Ellis on his one-month heart birthday!
Here's to the family that made all of this possible.
Here's to a quiet weekend of clearing lungs and cleansing hearts.

[clink!]

Melissa, Sam, and Ellis

Wednesday, August 23, 2006 10:35 PM CDT

UPDATE #2: 8:18 p.m. Thursday
It seems pathology felt our anxious pleading and decided to call back in results at this late hour -

NO REJECTION!!!

More details tomorrow and a full report from cardiology but for now -
sweet dreams to all.

UPDATE: 5:42 p.m. Thursday
After waiting ALL DAY for news of the heart biopsy results, looks like the pathology person has left for the day without entering anything into the computer or sharing them verbally with anyone from cardiology. So - we will know tomorrow. Unless I go kidnap a pathologist and drag them to the lab myself later tonight! Ellis is blissfully unaware of all that surrounds him, tomorrow is a new day, so good night, all.

ORIGINAL MESSAGE: 10:35 p.m. Wednesday
Another trip to cath lab under our belts and again all went well for Mr. Ellis.

He is snoozing the night away and I'm googling fungal pneumonias for entertainment. The Infectious Disease team decided to start Ellis on an anti-fungal medication (amphotericin - or amphoterrible because of its nasty side effects) today to treat any potentially unidentified-as-of-yet fungus in his lungs. He's been on antibiotics without much response and nothing has grown from the cultures, so we are searching for answers. Ellis is getting tested for every wacky bug in the world these days and we're just hoping for an answer soon.

The other option of course is that it isn't his lungs at all, but his heart moving too slow or suffering from rejection that is causing the "lung disease". Thus the trip to heart cath today.

Biopsy results we will get tomorrow sometime, not sure exactly when but I have decided not to drink any more water after 7 a.m. so I don't miss out on the big news by being down the hall! I suppose no coffee, either. Well, maybe I'll rethink.

Anyway, at the cath lab our faithful Dr. Dan took a look around while he was in there and measured some of the numbers they use to determine heart function. As we all know, Ellis's new heart has had quite a job getting moved in and settled in this crazy kid so it has been a little tempermental. "Diastolic dysfunction" has been the term thrown around for that, meaning that while the heart does a good job pumping blood out to the body and lungs, it doesn't do so great relaxing to let blood back in, and thus a possible explanation for part or all of the mushy lungs.

Well - are you all prepared to hear some good news? It's been a while, I know!

His diastolic dysfunction has improved! Significantly!

That's our version of the numbers rattled off by the cardiologist and he agreed it was, yes, very good news, since there was not much medically they can do for that particular kind of problem, just rely on the "tincture of time". So all this time, this slow slow time, something - a big something - has been getting better and better. Slow and steady, yaddah, yaddah, yaddah. [Ok, ok, it is good to be reminded of that darn motto when we start sinking into the "when" "how long" "what next" bog.]

In fact, Sam and I have been smiling a bit this evening again. We are trying to pick ourselves up and dust ourselves off from the trauma of the last days and renew our strength and nerve for the weeks ahead.

So we don't yet have an answer for the lung issue, but we are crossing off some really scary possibilities and that is an ok place to be for now. Let's hope tomorrow brings another big deletion.

Meanwhile, Ellis has been very comfy and cozy all last night and today and expecting to continue tonight. It seems we have found our "happy place" of just enough sedation and just high enough blood pressures to pee like the wind and he is even able to be awake a minute or two here and there for a sponge of water or a song or a glimpse of an Elmo video. Makes our day bright, those moments.

They've been able to go down on a few ventilator settings (ok, a tad) and though we had to stop feeds to go to cath lab, they will restart those any minute and we'll try to get him off i.v. nutrition this week and move to the full tummy version which just has to make everything better.

WARNING: RELIGIOUS CONTENT AHEAD! IF YOU TEND TO FALL ASLEEP DURING SERMONS, PLEASE FEEL FREE TO SIGN OUT NOW AND CHECK BACK AGAIN FOR MORE MEDICAL UDPATES!!!

I really want to share a story about an experience I had several nights ago, one which I've been a bit hesitant to write about but I think I'd like to have it "for the record" and for Ellis to read some day. Now - another warning - I'm definitely on the cynical, doubting side of faith (is there such a side?) and enjoy reading intellectual tracts by C. S. Lewis (Mere Christianity and The Problem of Pain are good) or some alternative interpretations of biblical texts, etc, and approach faith from a very "brain" perspective, not so much about my feelings, which seem to be so fickle and quite easily manipulated. I don't feel like I've had very many religious "experiences" but I feel like I've questioned and wondered and puzzled and wrestled with God a few times, and recently its been more of a contentious relationship, to say the least.

Anyway (I am getting somewhere, I promise!), though I have said them myselves, I have not been able to find much comfort in phrases like "God never gives you more than you can handle" or "God has a plan" or "God has chosen Ellis for this or us for this because he and/or us are strong" or "God does everything for a reason". Partly because of my cynical side and partly because an intellectual approach to any of those ideas leads you to conclusions like, "God has to dole out 3 cases of pulmonary edema this week and he chose Ellis" or "God has caused Ellis to suffer so he can teach the rest of us to enjoy the little things more" etc, etc. Now I know those are thoughts bordering on blasphemous but sometimes it seems like they are the logical ends to well-meaning phrases. Phrases that I, too, have said to countless people who have suffered untold losses of life and love. Because it seems like there's nothing else to say! You struggle for words of comfort and empathy and those words come out. And they do comfort and they do let us know you care. They do. They do.

But my point is (I do have a point, I do!) - I have begun to have an epiphany of sorts, or at least an experience (there's that intellectual side acting out again!). Not that God is going to fix everything and make Ellis better in the next 5 minutes (although I just paused for one moment, fingers poised above the keyboard, and prayed - nay, screamed! - for that), not that God can take away all suffering from children (ok one more rant to the big guy), but I know now - no I feel now, which seems more important right this moment - that in the midst of this nightmare there is Light.

We have been blessed a couple of times in our stay with a wonderful volunteer named Paul. Paul strolls the children's units at bedtime softly plucking lullabys on his mandolin. He popped in the first evening we arrived at the hospital on July 10th and it was a wonderful way to get tucked in for what was then (and still is) a scary unknown long road. He came again very soon after the transplant and visited Ellis briefly with a few soft notes to accompany the myriad of machines.

Last week, Paul wandered our way again and, remembering us and Ellis, found himself at Ellis's bedside with more music to share. After some chatting and familiar kids tunes, he asked if he could play a hymn for Ellis. Sam and I of course agreed and, somehow sensing the sacredness of the moment, leaned in - one on each side of the crib - close to Ellis and held his hands, stroked his head. The room was dimly lit and the only noises were i.v. drips and ventilator breaths.

Paul began to play ever so softly and gently,
"When peace like a river attendeth my way, when sorrows like sea billows roll..."
I almost asked him to stop, the tidal wave of sorrow and grief and lament was overwhelming, I was choking on sobs.
"...whatever my lot, Thou hast taught me to say, it is well, it is well with my soul!"
As I frantically blinked back hot tears, I saw the most amazing thing.
Warm, beautiful gold light had encompassed Ellis and was emanating toward both Sam and I and filling us.
"...It is well...with my soul...it is well, it is well with my soul!"
I was calm, my tears dried, my fear at that moment completely disappeared and I knew - I knew! - that Ellis was surrounded and sustained and protected somehow by more than I will ever know.

As the last notes floated above us, we all treasured that amazing moment of peace admist the chaos of the hospital and Paul quietly -without us even noticing- slipped out of the room, leaving us to hope and pray and whisper good night to our oh-so-achingly-loved Ellis.

I know there was heaven in that light and I know that the light came from all of you. You are surrounding us and sustaining us and protecting us somehow when we are too weak, too tired, too angry, too cynical, too scared to pray and sing and comfort ourselves. Your presence is holy. You are divine messengers.

It is well!

Melissa, Sam, and Ellis

Tuesday, August 22, 2006 6:28 PM CDT

Ellis has been resting peacefully this afternoon.
Sounds simple, but nothing seems to be simple these days.

We have been battling sedation issues for what seems like forever. Since yesterday morning's re-intubation, he has been either completely out from a drug injection or frantically flailing in bed fighting the tube, searching for water, reaching for us.

Last night we had some hours of rest with added sedation which seemed to last till the first light of the morning. Then we started all over again.

The docs responded very quickly and seriously this time and got him on a scheduled repertoire of sedations on top of the constant i.v. drips he has been getting. No waiting for him to get frantic before we give him something, just giving it to prevent his distress.

So he has been resting peacefully this afternoon.

Too peacefully.

So now he has low blood pressures throughout the day. We have started a medication to help his heart pump more strongly (Dopamine) and even moved up on the dosage to no avail. With these "soft" pressures and sleepy state, Ellis has stopped peeing.

The docs are in a tight spot and they have expressed as much to us. Unfortunately, they feel we are in a situation where we might need to sacrifice a bit of his comfort for his overall stability. That is, cut back on his sedation and see if we can get his blood pressures back to normal.

We reminded them that these last days have been unbearable and that our tolerance level for watching Ellis struggle is quite low. But we also realize the conundrum they are in and can appreciate the debate and concern for his well-being that they have shown and trust they will do their absolute best to acheive some balance.

Meanwhile the chest xray to some docs looks the same, to others perhaps a tad better, but not worse so we'll hold on to that. They have had to go up on his ventilator settings overnight as his lungs seem more stiff than before and he is more tired than they had realized.

So with the lung "disease" as they are calling it, there are two theories: infection or edema. Infection could be viral, bacterial or fungal. Edema (too much fluid) could be caused by not peeing well or weak heart function not able to clear blood from the lungs and get it out to the body fast enough.

Infection Solution. Yesterday a different pulmonologist did another bronchoscopy and it was startling the difference, even to us. Ellis's windpipe and lungs looked red, scraped, irritated and inflamed and what seemed like obviously infected. In fact the doctor said he did not see edema but infection. Ok - we have an answer! Let's send some cultures from the fluid inside the lungs that they were able to collect, see what bug it is, and treat it! But nothing has grown from the cultures. Nothing! Of course, you don't rule anything out for 72 hours for sure, and with fungi you can wait weeks. But nothing yet is frustratingly, well, nothing. No answers. Of course they have started 2 antibiotics just in case and are discussing starting an antifungal. We will see.

Edema Solution A. We know that he has been DRY. So dry, enough to lose weight quickly and be "negative for the day". That is, more out than in in terms of fluids. Except for today with the low blood pressures, Ellis has maintained really great kidney function. His creatinine and BUN numbers have crept up the last 2 days, so they are increasing his diuretic support and hopefully we can reverse that trend. But he is definitely not puffy or fluid-overloaded at the moment.

Edema Solution B. So the other possibility is his ongoing "diastolic dysfunction". Since transplant, we know that his heart is stiff and unable to relax enough to allow blood in normally. This is due to the trauma of the heart muscle being without blood for hours during transport and surgery, as well as probably some trauma from the initial shock of his narrowed pulmonary arteries. Everyone tells us that this will resolve, but only with time, there are no drugs or interventions or magical potions to recover function sooner than Ellis is ready. However, another answer is rejection. Rejection of the heart can lead to pulmonary edema. He has had low grade fevers since his spike to 103.9 on Saturday and while that can easily be chalked up to an infection, since nothing can prove that he actually has an infection, we must rule out rejection.

So tomorrow some time Ellis will travel once again to the cardiac catheterization lab to have his heart biopsied for the 2nd time in its 4 weeks in Ellis's body. While they have access to his heart, they will also measure the pressures and function of the muscle and see if anything has changed. We probably won't know any biopsy results until Thursday which I'm sure will seem like an eternity.

Hopefully all of these procedures that we continue to subject our little boy to will give us some answers. The "Infectious Disease" team was in again, searching for a solution to this lung issue. They asked us some very interesting questions like,
"Has he had any exposure to exotic animals we should know about?"
(just the zoo and we wouldn't let him touch anything!)
"Any world travelling recently?"
(does not being 2 hours away from the hospital since April of 2005 sound like any travelling to you?)
"He doesn't have a cat, does he?"
(just the white soft machine washable version)

Besides being an interesting interview, it made us realize they really do not know what is wrong with our son and how to fix him.

W$R@#)(*$#*&$@(&

Ok. Deep breath.

They are going to send tests for every odd-ball disease, virus, infection you can think of and even possibly do a lung biopsy soon.

We are going to be by his side and get him through the frantic moments, hopefully able to soothe him and calm him tonight.

We will go with him to the cath lab tomorrow and wait very impatiently for more information, if not answers, then at least the elimination of some possibilites.

The best docs in the world are working as hard as they can. Besides the intensive care team we have pulmonology, cardiology, cardiac surgery, interventional cardiology, renal, nephrology, infectious disease, pharmacy, respiratory therapy, nursing -

and you! The best cheerleading, shoulder-to-cry-on, listening ear to yell in, praying, whooping, raging, lamenting, celebrating, whispering, hovering team of Ellis fans in the world!

We have hope, dammit, and we're holding on.

Melissa, Sam, Ellis.

Sunday, August 20, 2006 10:47 PM CDT

UPDATE: Monday, 10:12 a.m.

The docs will be reintubating Ellis momentarily. He is too tired to cough and clear the crud from his airway and is struggling too much.

ORIGINAL MESAGE: Sunday, 10:47 p.m.
Well, the chest x-ray finally caught up with our strong and brave little Ellis.

Last night was a restless one, an hour of sleep here and there. Today the poor kid was working oh-so-hard to keep breathing. While yesterday he could actually laugh at Grandpa Ron's jokes, today he couldn't even stop gasping for air long enough to say one syllable or find the energy to lift his head and show us his beautiful eyes. He struggled every minute of this day, writhing to find a comfortable position in bed, straining to sit up and work with gravity to expand his lungs, then collapsing from exhaustion back down onto the pillow.

Countless times the nurses gave him sedation and pain medication, all the while careful not to jeopardize his fragile respiratory state, but nothing seemed to relieve his struggle and give him rest.

A couple of blood tests this afternoon confirmed what we had feared - his new heart was beginning to wear out from all this frantic work.

I can't even begin to imagine what this would feel like, even after witnessing it first hand. Since Thursday at 4, Ellis has been breathing at least 60 times per minute, if not 80 or 90. Just try that for yourselves (without getting too lightheaded), then imagine doing that through a sopping wet sponge, then imagine sustaining that with a weak malnourished post-op body for THREE DAYS. He needed some help.

At 4:00, they tried the next level of support before going back on the ventilator. It involves a plastic mask covering his nose and mouth with tubes connected to oxygen and positive pressure supply. The mask is attached to his face with four fabric straps around his head. Obviously he struggled and fought as they put it on his face, but he immediately seemed to relax and accept the extra support.

After about 30 minutes of semi-calm resignation to his new fate, Ellis began to fight the mask again using his precious energy to try pulling off the actual mask or yanking on the tubing or just thrashing his limbs to express his anger and misery.

After NINETY MINUTES of this struggle (with Sam and I trying everything to distract him or calm him or restrain him - oh yes, and more sedation), everyone agreed the mask had not fulfilled its original purpose - that is, taking away some of the work from his heart.

(I'm not sure if my slamming out of his room and yelling "I CAN'T TAKE THIS ANYMORE I CAN'T WATCH HIM STRUGGLE LIKE THIS ANYMORE" into the hallway, running through the unit sobbing, and throwing over the "welcome to the picu" sign helped bring the situation to anyone's attention, but I did my best. Admittedly, though, it was actually my most darkest and selfish moment. I left him in his pain - to get him some medical attention, yes - but also because "I" really could not watch him suffer any longer. I was broken and tired and so profoundly sad. Ellis, my son, forgave me, though. When I returned a few minutes later, he gasped my name between breaths and reached out with a trembling hand for me. He is stronger than I will ever be.)

The respiratory therapy team took off the mask and allowed him to try being back on the high-flow nasal cannula for the next several hours while the docs conferred about a new strategy.

Meanwhile, one of the cardiologists came in from home when she heard of Ellis's struggles with fever, breathing, and some of his lab values. We had an EKG and another echocardiogram to check for any signs of rejection that could explain all of those symptoms. None were found. Partly we were thankful for those results, but also partly frustrated to still not have a diagnosis, and still no solution, no treatment plan, no answers.

There is a finite amount of times you can look into your child's eyes and tell them everything will be ok when you aren't sure of that at all.

Ellis's struggles continued throughout the evening. He was fighting for every breath and unable to be still even for a second. Every part of his body was working for oxygen it could not get through those wet lungs.

Finally at 9:30 p.m. we were able to find enough sedation to keep him comfortable enough to put on the mask again and support his breathing. He is resting comfortably at the moment and the plan is to hopefully be able to sedate him just enough for him to rest throughout the night without making him too sedated and have to be put back on the ventilator.

We will be at his bedside as we have been these last nights doing what we can to soothe him, strengthen him, calm him, reassure him...

...It's now after midnight. I had to step away as Ellis woke up again in a panic about the mask covering his face and he lashed about in his bed until they could get more sedation into his veins. He is finally asleep again. For now.

To witness the suffering of any child is difficult beyond words. To witness the seemingly unending suffering of your own child, the child who looks into your eyes for help is unbearable.

As we have tried to soothe Ellis over and over this day, the only comfort we can offer whispered in his ear - we are here. So close your eyes, Ellis, breathe, think of home, think of snuggling in bed on rainy Saturday mornings, think of swinging in the autumn air, and breathe, my love, breathe, we are here.

Melissa, Sam, and Ellis

Saturday, August 19, 2006 4:39 PM CDT

It's a beautiful day in the neighborhood...
white fluffy clouds
blue sky
the mississippi river sparkling in the sunshine

Life is pretty good here in the PICU the past few days. Ellis is still working like a champ to breathe on his own without the ventilator. Working hard, but getting stronger with each hour. It's now been 48 hours since the nasty tube came out and while the docs say we're not quite out of the woods yet (meaning he could decompensate and we'd have to reintubate), the respiratory therapist actually TOOK THE VENTILATOR OUT OF THE ROOM today! That's a darn good sign. Folks here like to leave equipment in the room to "ward off evil spirits" as long as possible. Kind of a superstitious bunch, but whatever works! Better to have things close at hand in an emergency, I suppose, and better safe than sorry.

But obviously Ellis is proving to all involved that he has the will and the way to breathe breathe breathe even if his chest xray looks like a white-out blizzard in the plains of South Dakota (and I guess it was WORSE today, if you can believe that - we're just not going to tell Ellis).

Ellis did spike a fever today - 103.9 - eek! - so we're back on the hard-hitting antibiotics and tylenol. The quiet, whimpering, sleepy little boy from this morning is now sitting up in bed dipping a sponge stick in water and sucking it down all by himself. Though it's hard for him to coordinate all that when he keeps waving both arms up and down in his "happy dance" and smiling at stinky-jokes or whenever dad walks in the room.

Still no voice - though he has yelled a raspy "moo" when asked for his mad cow impression - so he'll be talking up a storm soon. For now, though, breathing and healing and getting stronger are on the agenda.

All of which will be easier because he is slowly but surely getting food in his belly (ok, jejeunum, but who's counting?!). Not a lot (ok, 5 ccs an hour of 1/2 strength Pediasure), but it's a start and hopefully the docs will get braver with each passing day (Ellis will show them how!).

We're weaning down on the pain medications and sedation and he seems to be doing well with that, too. We also got to take out his NASTY i.v. in his neck. The skin around that site was so broken down from all the dressing changes and drool and itching. We switched the meds going in there to the dialysis catheter! Since no one was using it for a while (woo-hoo!), it was starting to feel lonely. Sam and I are just glad it will be finally good for something! Now Ellis has all of his i.v.'s on one side of his body so holding him and snuggling him and hugging and kissing are WAY easier.

Thus the permanent smile on our faces these last hours and my awareness of and ability to gush over the scenery!

Life is good and keeps getting better.

Thanks for celebrating with us!

Melissa, Sam, and Ellis

Friday, August 18, 2006 1:24 AM CDT

ELLIS JOSHUA BERGSTROM IS BREATHING ON HIS OWN!!!

Ok, with a little bit of help, but NO MORE VENTILATOR TUBE!!!

Another wild ride on the PICU coaster - yesterday we made some really great moves on the ventilator and even gave him a test run for 5 1/2 hours doing all the work himself. Sam and I fell asleep last night with "extubation" on the possible docket for morning.

When we awoke, though, all the extubation plans had been cancelled and we heard that it was a maybe thing - as in "maybe by the end of the week, maybe next week, maybe."

Meanwhile, we're looking at our kid in this bed with this giant tube coming out of his throat and he is playing with flash cards and signing and trying to talk around the tube. He's also SOBBING everytime he gags on it SCREAMING every time he has to be suctioned or WINCING with each cough.

This morning he woke up and was SO HUNGRY he could not be consoled. He wanted MILK MILK MILK and WATER WATER WATER, so we gave him little sponge-sticks soaked in water to relieve his thirst.

His tummy has not been working very well so far, still pretty sleepy from all the sedation, I guess. Although being hungry today was a really good sign. The docs still thought it best to bring him down to Interventional Radiology to put in a fancy schmancy feeding tube called a G/J (gastric/jejeunum). It has 2 ports, one goes into the stomach and one goes into the top of his intestine (jejeunum - a great scrabble word!) so we can try feeding him that way.

When we got back it was obvious that he was not a happy kid. He was hungry, thirsty, and obviously tired of this darn breathing tube. The docs came in to look at him and said, "We either have to put him out or take that tube out." That is, sedate him heavily so that he's not so aware and miserable or give him a shot at breathing on his own.

Now you have to realize that his chest xray still looks pretty icky. White fuzzy lungs on both sides. Our wonderful Respiratory Therapist, Cindy, said she's never ever successfully extubated a kid with that kind of xray.

But Ellis likes to be the first, doesn't he?!?

So at 4:00 p.m. today, they pulled out the tube and put him on a high-oxygen-flow nasal cannula. We got to hold him some more and keep him calm and distracted from this strange new existence - and from thoughts of food and water! The docs wanted him to just work on breathing, not trying to coordinate that with swallowing.

After about 2 hours they let him have swab-sticks of water again and after 4 hours he drank water through a straw.

He doesn't have any audible voice yet, as he is very hoarse from having that tube in. But he can mouth words pretty darn clearly and let us know what he wants. (But who knew how baby-sign-language would come in so handy these last days?!? We highly recommend it for all parents!)

Right now he is resting peacefully and Sam and I are taking shifts at the bedside so we can get him through these first hours calm, peaceful, and steady.

A quick and celebratory review of "tube-age":

5 i.v.s
1 dialysis catheter (feeling oh-so-lonely and unnecessary!)
1 high flow nasal cannula
ZERO chest tubes
ZERO foley catheter (it fell out today - yay for diapers!)
ZERO BREATHING TUBE!!!!!!!!!!

I asked Ellis tonight after all his dressing changes and xray and nebulizer treatment -

"Who is the strongest, most bravest boy in the whole world?"

And he silently but proudly answered

"ME!"

Amen to that.

Love,
Melissa, Sam, and Ellis

Friday, August 18, 2006 1:24 AM CDT

ELLIS JOSHUA BERGSTROM IS BREATHING ON HIS OWN!!!

Ok, with a little bit of help, but NO MORE VENTILATOR TUBE!!!

Another wild ride on PICU coaster - yesterday we made some really great moves on the ventilator and event gave him a test run for 5 1/2 hours of doing all the work himself. Sam and I crashed last night with "extubation" on the possible docket for morning.

When we awoke, all the extubation plans had been cancelled and we heard that it was a maybe thing - as in "maybe by the end of the week, maybe next week. Maybe."

Meanwhile, we're looking at our kid in this bed with this giant tube coming out of his throat and he is playing with flash cars and signing and trying to talk around the tube and SOBBING everytime he gags on it or has to be suctioned or coughs.

This morning he woke up and was SO HUNGRY he could not be consoled. He wanted MILK MILK MILK and WATER WATER WATER, so we gave him little sponge-sticks soaked in water to relieve his thirst.

His tummy has not been working very well so far, still pretty sleepy from all the sedation so we brought him down to Interventional Radiology to put in a fancy schmancy feeding tube called a G/J (gastric/jejeunem). It has 2 ports, one goes into the stomach and one goes into the top of his intestine so we can try feeding him that way

When we got back it was obvious that he was not a happy kid. He was hungry, thirsty, tired of this darn breathing tube. The docs came in to look at him and said, "We either have to put him out or take that tube out." Sedate him so much more so that he's not so aware, so miserable or give him a shot at breathing on his own.

Now you have to realize that his chest xray still looks pretty icky. White fuzzy lungs on both sides. Our wonderful Respirtory Therapist, Cindy, said she's never ever successfully extubated a kid with that kind of xray.

But Ellis likes to be the first, doesn't he?!?

So at 4:00 p.m. today, they pulled out the tube and put him on a high-oxygen-flow nasal cannula. We got to hold him some more and keep him calm and distracted from this strange new existence - and from thoughts of food and water as they wanted him to just work on breathing, not swallowing!

After about 2 hours they let him have swab-sticks of water again and after 4 hours he drank water through a straw.

He doesn't have any audible voice yet, he is very hoarse from having that tube in. But he can mouth words pretty darn clearly and let us know what he wants. (But who knew baby-sign-language would come in so handy these last days?!?)

Right now he is resting peacefully and Sam and I are taking shifts at the bedside so we can get him through these first hours calm, peaceful, and steady.

So to review the amount of tubes:

5 i.v.s
1 dialysis catheter (feeling oh-so-lonely and unnecessary!)
1 high flow nasal cannula
ZERO chest tubes
ZERO foley catheter (it fell out today - yay for diapers!)
ZERO BREATHING TUBE!!!!!!!!!!

I asked Ellis tonight after all his dressing changes and xray and nebulizer treatment -

"Who is the strongest, most bravest boy in the whole world?"

And he silently but proudly answered

"ME!"

Amen to that.

Love,
Melissa, Sam, and Ellis

Tuesday, August 15, 2006 11:07 PM CDT

You know how when everything is going swell and things are generally being taken for granted all around you. It would take a pretty radical event to stop you in your tracks and startle you into holding your breath and you feel like you've tasted heaven just a bit...

Well for us right now it is the tiniest most amazingly small things that have thrilled us beyond belief.

Ellis smiled today. He SMILED!!!

He gave us the most wonderful toothy grin underneath the ventilator tape and around that nasty vent tube. Sam lifted up his precious foot and said "Eeeeww, Ellis! Your feet are soooo stinky!" And he smiled. He SMILED!!! Through all the bruises and scars and tubes and nausea and tape - he smiled.

And while we're celebrating his gift for finding joy amidst pain, let me also point out that he now waves "bye-bye" to nurses and respiratory therapists, has signed not only "all-done" and "music" but "stop" (in the middle of the frosty the snowman song), shakes his head "no" or nods "yes" to questions, gives high fives (weakly, but pretty good aim), and gives a THUMBS UP if you ask!

Our hearts are so full of love and adoration of our son - a bittersweet ache for we have missed him so much these last weeks and we can hardly find the patience to do the slow and steady version home - the nurses gently remind us not to rip everything out, grab him in our arms, and run far far away. Soon, Ellis, soon, when you are ready.

The last three days have been very quiet on the medical front. Ellis most definitely seems to be in charge of the agenda around here, trying to tell the doctors what he needs in any way he can.

First of all, some really incredible news: No dialysis! He has not had dialysis since Saturday afternoon and has been able to lose weight by just pee-pee-peeing. He is now down to 9.8 kg and we've moved down a size in diaper, too! His kidneys are really starting to recover. The labs haven't yet come down to a healthy level, but they are not going up anymore and, well, that's a start. One of the dialysis nurses said that putting in a dialysis catheter is the sure-fire method to wake up sleepy kidneys and I guess he is right!

Lung-wise, his chest xray continues to look infected and wet. They did find a secondary pneumonia growing so we've added another antibiotic. However, it seems like Ellis doesn't really care what his xray looks like! He has been breathing better and getting stronger and so the docs decided to just "see what he could do" today and began aggressively weaning down on the ventilator settings. Over the weekend we were on a rate of 24 breaths per minute and a PEEP (positive pressure to keep the lungs open) of 10. Now step by step we have moved down to a rate of 8 breaths per minute (that the ventilator gives him, he takes 20 or so on his own in addition) and a PEEP of 6! He is just on "room air", no additional oxygen needed and he is getting so strong. His own breaths are nice and big, just like the ones the ventilator gives him. I think the plan is to let him rest tonight and start moving again in the morning. Hopefully the chest xray will start improving, too.

So if his kidneys are improving and his lungs are improving, that means his heart function must be improving, too. He is no longer on the medicine that they had to start with Saturday's dialysis that was helping keep his blood pressure up, they turned that off on Sunday and stopped a med he was on for too-high blood pressures. On his own he seems to be just fine. They might even take off some of the diuretics starting tomorrow. We like when things get crossed off in our notebook!

Speaking of things going away, we finally got rid of that last chest tube! He had 3 on Friday morning and now he has ZERO! Partly that helps him breathe easier and be in less pain, but mostly it is awesome because -

WE GOT TO HOLD HIM!!!!

Sam tried over the weekend when he just had one chest tube left, and it didn't go well - he vomited and filled his diaper (Ellis, not Sam - thought I would clarify!) so got put right back in bed.

But yesterday I held him for THREE glorious hours in my lap and we rocked and talked and napped and it was heaven. Today Sam got to try again and it was wonderful. That's when Ellis gave his first thumbs-up and started really waving to everyone. Mostly, though, he just stared up in Sam's eyes and rested.

We've also been able to tell a lot more what he's trying to "say" around the vent tube. He has said "Elmo" very clearly when asked what he wanted to watch on the computer and says "mama" whenever I step away from the bedside to get a new book or toy.

Oh, our wonderful, beautiful, strong little boy is fighting his way - every darn step of this difficult way - to home sweet home. We can see it in the future again! It is going to happen! Some big hurdles and tough times ahead of course, but oh friends - we are SMILING - we have never had so much hope.

Melissa, Sam, and Ellis

Sunday, August 13, 2006 5:58 AM CDT

Good morning, residents of Ellisville!

It is still dark over the Mississippi and here on Ellis island. Dreams of Ellis walking and talking and smiling and laughing have accompanied Sam and I through the last nights of sleep in the family lounge down the hall from his room.

It is a made-for-TV reality show, this PICU place. I really think if there were a 24-hour live-feed camera in the family lounge showing the dynamics of sharing space amongst emotionally fragile strangers, maybe add a cash prize to those who survive the longest - "The (Sur)real World" or "The Amazing (G)race" or "Fear Factor - Hospital Edition".

Here's a good illustration of the atmosphere:

Yesterday for "slupper" (our one meal between lunch and supper), Sam ran out and got some soup and sandwiches at the grill down the block. Ellis was sleeping so we both scooted down to the lounge to quickly eat (can't be gone too long and miss any doctors or medical developments!). There was a small crowd talking and watching TV when we got in and we just sat across the room and began eating. About three bites in, I realized they were watching Sister Act 2. And it had just reached the scene where the choir sings, "O Happy Day" - the song we had the HNLC Choir sing at our wedding 8 years ago. I'm sure the group of TV watchers were wondering why I was sobbing into my grilled cheese during such an upbeat song, but like I said - reality show, here we come!

Sam and I seem to be the last ones to bed on this floor each night, so whatever furniture is left-over at 12:30, 1:00 a.m. is ours for the taking. Some of the nurses have hinted that we are in this for the long haul, and so we had better start pacing ourselves - maybe going home for a night or two. I can't even adequately express how far away home feels, how long a 20 minute car ride would seem, how empty that car seat would be, how quiet the house would be when we got there.

So we live here - home is where the heart is, as they say, and for us it is true a million times over. Luckily for us, the nurses and nursing assistants make us as comfortable as they can and are a smiling face in the morning, greeting you as you stumble down the hall back to the room with your toothbrush and pillow. (Sounds like camp or dorm life, doesn't it?)

Ellis has had a very quiet weekend since the placement of his semi-permanent dialysis catheter on Friday night at the O.R. We had a dialysis run Saturday afternoon that took off 360 grams of fluid and waste products. Today he is scheduled for another run at 12 noon, but as we know all too well, plans change. Since yesterday's run, he has had some low blood pressures and has had to start a medication to keep them in an acceptable range.

There seems to be some debate about what "dry weight" goal we should be working towards. Ellis was 10.6 kg when we were admitted on July 10. He was 11.5 kg the day of transplant. He is now 10.1 kg. I can fit his upper arm in my circled thumb and index finger, he is so heart-breakingly thin. I guess the working theory is that there is still fluid trapped in his lungs and the more fluid we can take off, the better his lungs will be, and the faster he can come off the ventilator. Even if it affects his blood pressure, it is better to support him through that and continue to take off fluid. I hope (and am learning to trust) they're right.

Well the sky is growing light and Ellis is still sleeping soundly. He has been so comfortable these last days, able to be awake for a few minutes at a time without being terribly agitated. He mostly sleeps, though, and we are glad he can rest. Ellis has most definitely reached that point where he can choose to be awake or not, depending on who is at his bedside. Sam and I will be sitting with him, one on each side of his crib, talking and holding his hands and he will look back and forth between us. Then a doctor or nurse will need to get to him to examine him or draw labs and he will close his eyes and go to his "happy place". I hope he sees puppy dogs and swing sets.

Tomorrow (Monday) brings a new week and new doctors. Possibly a new plan, too. Sometimes that can be confusing and frustrating, but I think this week it will bring renewed hope and energy for some much-waited-for and much-needed progress.

Till then...
Melissa, Sam, and Ellis

Thursday, August 10, 2006 5:18 PM CDT

UPDATE #4: 7:27 p.m., Friday

He's back in the room and a bevy of blue-scrub-clad figures are trying to untangle the mess of i.v. lines and monitor cords to get him tucked in for the night. They said he'll be sleeping pretty soundly till morning so we'll just hold his hand for a few hours before we, too, find a quiet corner down the hall for some zzzs. Good night, all.

UPDATE #3: 6:01 p.m., Friday

After waiting all day for a new time for this latest o.r. trip, this afternoon without warning (or the decency of a prior phone call) a team of anesthesiologists swarmed in here about 15 minutes ago, surrounded his bedside, and before we could even give a "see you soon" kiss, they were pushing him through the door and to the elevators. Sam and I followed them as far as we could asking inane questions like, "Are you sure it is Dr. Hunter doing the procedure?" "Does he know it has to be a left subclavian catheter?" "Do I need to sign a new release form?" "Where should we be waiting when Dr. Hunter is done?" The answers from the gruff (but familiar) anesthesiologist were far from satisfactory - mostly consisting of "Dunno" "Think So" "He won't need to talk to you so just stay here". After a brief round of sobbing in the elevator bay after the doors closed, we got back to his quiet empty hospital room - exhausted, quiet, and empty ourselves. We just want to do what is right for Ellis, what is best - and sometimes that is so hard to know. The attending intensivist talked with us at great length this afternoon, reiterating her belief that this procedure was necessary and the "not wrong" decision (her words). She eased our fears of "other opinions" we've been hearing all week by saying, "Anything that happens to Ellis on this Unit has to be cleared by me, because I have all the information and ultimately he is my responsibility." If I could have had my wits about me at the moment, I would have said, "No, Ellis is ultimately the responsibility of Sam and I." That is the weight we feel right now. Those brown eyes look at us from the hospital bed and ask us "what is happening to me?" "can you make it better?" "can you make it 'all done'"? For now, we are doing what we feel is right aided by the doctors and nurses that are indispensable to his survival. That will have to be enough for now and hopefully Ellis will understand some day.

I'll try to let you know when he is snuggled back in to the PICU room, hopefully in an hour or so.

UPDATE #2: 4:09 p.m., Friday

Well, as of this morning we were still on at 3:00 p.m. today. Until a call came saying that Ellis was delayed till tomorrow. Until the doctors came in and said no definitely today at 3:00. Until the message got to our nurse that it was most likely still tomorrow. Until the top doctor made some calls and got us on the schedule for TODAY, but as an add-on so no idea what time.

Here we sit. I'll try to update when we have a time, but I think we will just have a few minutes notice ourselves. Enjoying the ride?

UPDATE: 8:00 p.m., Thursday

Ok - Never mind! The top doc that does this kind of hybrid procedure (see original message below) has left the building and everyone agreed nothing but the best for Mister Ellis. We are postponed till 3:00 p.m. tomorrow afternoon for the dialysis catheter placement, this particular doctor's first available time.

Anyone else have whiplash? Sam and I had already talked with the anesthesiology resident, the surgery fellow, signed the consent (which I made the fellow amend to specify which side of the body and which vein they would be accessing!), and not until the top anesthesiologist came up to see us did everything get rescheduled.

Of course, this whole darn thing could be cancelled if those kidneys wake up overnight and start being super-kidneys! First, though, let's give a round of applause to his cute little kidneys for the good work they are doing and continue to do. He's actually putting out twice the minimum expectation for urine for someone his size - that's good. Unfortunately, to catch up from all the so-so days the last weeks and from all the fluid he has been given, we need great big super-kidneys.

Send your white light and energy fields and chanting to his kidneys that they may be strengthened and restored and renewed and turn into super-kidneys!

More tomorrow if the surgery plan changes (again!?! - it's possible!) or if not, after we return from our 3:00 p.m. procedure - or - if we have a kidney renaissance between now and then!

Here's to going pee-pee-pee all the way home!

ORIGINAL MESSAGE: 5:18 p.m., Thursday

Another day, another procedure...

Ellis is heading down to the O.R./I.R. hybrid facility. Another hybrid you ask? That's what happens when you're on the cutting edge of technology - Ellis now needs an Operating Room with Interventional Radiology technology.

The plan has been most definitely up in the air again today. If you recall, yesterday we were on the edge of our seat about whether or not we were going to the cath lab to place another stent. We did.

Today the question was if or when Ellis would need a more permanent line placed so we can continue the hemo-dialysis. Last night they informed us he was on the schedule for today, but with non-urgent status so he would possibly be bumped. This morning the news was that he was bumped till tomorrow. About 2:00 or so, I casually asked our nurse, "So, do you think there's any possibility he would be un-bumped and we would actually go down to the O.R. today?" "Not really, no" was the equally casual answer. No more than 15 minutes went by when the phone rang and it was the O.R. asking if Ellis could be ready to go by 6:00 p.m.

Do you see why Sam and I never ever want to leave his side?

So in the meantime we have been convinced by the various doctors that this is, in fact, the best thing to do and the best timing possible. Ellis did not have dialysis yesterday or today (he did on Sun, Mon, Tues) and the signs that they were looking for to cancel the line placement were: continued lowering of creatinine and BUN levels, weight loss, ability to wean down on the ventilator, clearing chest xray, etc. Ellis did the opposite: creatinine and BUN levels went up, he gained a 1/2 kilo, had to go up on some vent settings and his chest xray looks worse today.

So - all the doctors have now agreed that this is the next step and they have finally all agreed on where to place the line. Our amateur understanding is that it will be tunneled from center chest under the skin up to the left subclavian vein, inserted there and then threaded through darn near to that infamous SVC and his brand new heart. The part we can see will be the double-lumen blue and red ports sticking out of his center chest where the dialysis machine will connect - circulating his blood and removing fluid and waste products. It really is a mind-blowing process. The three times Ellis has had hemo-dialysis (remember he was on peritoneal dialysis when he was a baby for 6 weeks), they were able to take off over a liter of fluid - that is, over 2.5 KILOGRAMS of weight - OVER FIVE POUNDS on a skinny little 25-pound baby, I mean a 20-pound baby, I mean a 20-pound brave little man. We've been telling the nephrology team that they should paint the machine a pretty color and market it to the movie stars for red-carpet weight loss and detoxification. They haven't taken us up on the idea...

Anyway, we are definitely saddened by this most recent trend of events and scared that he might need dialysis for an extended period of time. However, the foremost goal for all of us is to get Ellis extubated, off that ventilator and without any tubes in his mouth and throat. Then he can talk and cry and breathe and sing. Not to mention the darn pneumonia he already has - turns out it was resistant to the first antibiotic so we switched last night. Sitting on a ventilator puts you at great risk for infection, especially when you are immuno-suppressed like Ellis.

He has been mostly sleeping today, with a few minutes here and there of lotion-time, quiet songs, and holding books in his line of vision for him to see. Can't try feeding him before O.R. and no sense in weaning the vent settings since we'll be back on full support for the rest of the day and all night tonight.

I thought I would do a count of all the foreign objects he has in his body so you can keep track:

1 Ventilator Tube
1 Dialysis Tunneled Catheter (after tonight)
5 I.V. lines (1 arterial, 1 PICC, 1 PA, 1 RA, 1 IJ for you medical types)
2 sets of temporary pacemaker wires
1 chest tube - WAIT I FORGOT TO TELL YOU!!!
*****Ellis got 2 of his 3 chest tubes pulled out today!!! Woo-hoo!
1 Foley Catheter (ahem, ummm, you know, for urine)
1 Gastrostomy Tube/Feeding Tube (we've had that for a while now)
2 Pulmonary Artery Stents
2 SVC Stents
1 New Heart!

Well, I think that's enough for anyone. So hopefully tonight will be our last addition for a long, long, time.

I'll update when he's back safe and sound in the PICU and let you know how it all went. Thanks for surrounding Ellis today and every day with your thoughts and prayers.

Melissa, Sam, and Ellis

Wednesday, August 9, 2006 1:00 PM CDT

UPDATE: 4:54 p.m.

Ellis is back upstairs after this most recent cath procedure (his 7th in his lifetime!). All went well and his SVC is wide open thanks to the new stent...Dr. Gruenstein and Ellis are WAY too good of friends right now. We're settling in for a very quiet evening for Ellis as he sleeps off the anesthesia. I think Sam and I might even take turns sneaking away for a shower down in the family lounge - unfortunately quite overdue! More tomorrow as we look towards a new dialysis catheter or not...who knows what the new day will bring! Thanks for checking in.

ORIGINAL MESSAGE: 1:00 p.m.
Phew!

It has been the slowest of slow days and yet a whirlwind of activity around here. How are both possible?

Let's see if I can sum up - maybe I'll go from head to toe:

Head/Neurology: Ellis is resting SO peacefully, even without some of the "big gun" sedation bumps. He wakes and looks around, squeezes our fingers, tries to scratch and pull out his ventilator tube, and then falls back to sleep with some lotion on his legs or a gentle head rub. It has actually been a good balance of knowing he is in there and quite annoyed with all the stuff sticking out of him, and yet able to rest and not panic or be in too much pain.

Lungs/Pulmonology: The bacterial pneumonia seems to be under control, but he has been running a few low-grade fevers the last two days, so they're starting another antibiotic just to be sure. His lungs sound more clear every day, so we have been able to wean down on the venilator a bit.

Heart/Cardiology: The big discussion since Monday's catheterization has centered around 2 things - the SVC and the ventricular hypertrophy. The stiffening of his left and right ventricles everyone agrees will resolve with time if we can support him with certain medications, etc. Wait and see approach (frustrating, but more often than not the thing to do). The SVC (superior vena caval) was seen to be narrowed and the ballooning procedure on Monday had limited success. With much debate, it seems that we are, in fact, going to stent that open TODAY. Like in an hour or so! At 4 p.m. yesterday we heard sure!, at 10 p.m. we heard no way Jose, at 10 a.m. we heard probably not, and a little bit ago we heard ya sure you betcha let's get him ready to go!

Phew!

Kidneys/Nephrology: Part of the confusion about the stent idea is related to the dialysis catheter that Ellis has in his right leg. It is a temporary line, only supposed to last for 72 hours, which was up last night. However, it is a mighty big i.v. and the catheterization doc said he could use that same hole to access the SVC and place the stent. So they've kept it in overnight after yesterday's dialysis run and will be able to use the same "hole" rather than make a new one! Multitasking! But they have to do it now before we have to remove the line. Are you confused yet? Good - because there's more. The second part of the dialysis conversation is "will he need more dialysis in the future?" Like tomorrow, or later tonight for example. Well, we can't use the current line because it is past its prime and leaving it in can ruin that vein and cause infection, etc. We could put in another temporary line in his other leg for another 72 hours but that would compromise another vein that he will need for future catheterizations. So...the talk today is about going to the O.R. tomorrow and placing a semi-permanent dialysis line in his chest. Sam and I have some major reservations about this idea, but are trying to keep our minds open as the doctors balance risk and benefit anlaysis over the next hours. Meanwhile, Ellis is still peeing like a champ, and his creatinine and BUN numbers are coming down nicely, so it is not urgent. The docs just don't want to wait too long and have it become urgent, more dangerous for Ellis to be operated on then. At the same time, everyone realizes that the most important next thing for Ellis is to get off that stinking ventilator. Quality of life and for infection prevention, especially because he already has pneumonia, we don't want to hang around on that longer than we have to. They think continuing the dialysis would help him prevent fluid overload in the near future and get him breathing on his own.

Phew!

Are you confused, overwhelmed, swinging in a few thousand different directions?

Great - so are we!

So we're heading down to heart cath in a few minutes to place the SVC stent. The rest of the day should be fairly quiet while the docs continue to wait and watch and put their heads together as to where we go from here.

It is an amazing art and science, this medicine business. I'm so glad that Sam and I have the luxury of summertime and support systems and sanity to be able to be here with Ellis 24 hours a day (I haven't been home since July 10!). Trying to just "check in" by phone once or twice a day as some parents have to do that have other children or two jobs or single parents would be so scary. We are here witnessing the process of decision making and the amazing investment of the medical staff here in caring for our son. Each specialist, intensivist, resident, fellow, nurse, respiratory therapist, floor-sweeper, secretary, technicians, lab scientists, pharmicists - countless people doing their very best and being incredibly kind and gracious and sensitive to us as a family and as parents as well. Ellis is in good hands.

Melissa, Sam, and Ellis

Monday, August 7, 2006 6:27 PM CDT

A new day...a new week...a new hope!

We finally found the right sedation for our dear Ellis late last night and we all got some much-needed sleep. Amazing how we found peace and were able to breathe again as soon as his little arms and legs relaxed and his eyes with those long lashes smoothly shut and his breathing slowed to be in sync with the ventilator. It seems at times as if the three of us are actually one as our blood pressure, respiratory rate, heart rate, and temperatures rise and fall together. Intertwined, connected. I hope - no - I believe - no - I know in my heart Ellis can sense this, too. Though we can’t take this away from him or share it with him or put ourselves in his place (how many times have I wished that?), we are with him.

We traveled with him to the catheterization lab this morning for his first heart biopsy and some other testing of heart function. They found several pieces of information - some good, some, well, iffy.

1) His SVC, superior vena caval, the vein that drains blood from the head and neck back into the heart, is narrowed. Like his pulmonary arteries, the narrowing occurs at the anastomosis (surgical connection) and is quite obvious in the pictures they showed us today. After confirming this narrowing, they did attempt to balloon out the SVC with limited success. Most likely this will need a stent placed, but it is something we can do in the near future without too much concern (not nearly as involved or risky as the PA stenting).

2) Ellis still has high pulmonary artery pressures. The stents they placed post-transplant Day One look wide open and healthy - good news and not the cause of the elevated pressures. His pulmonary veins (route of blood from the lungs back to the heart) look open - good news and not the cause of the elevated pressures.

3) However, the left and right ventricles of this new heart are not recovered from all the trauma of the last weeks. The ventricles are too stiff to relax between pumps to allow in enough fluid from the lungs and body – thus, the build-up of fluid in the lungs, the kidneys, the liver, etc. Thus the rising lab numbers for all of the above and our inability to progress on ventilator settings. This stiffening and thickening (hypertrophy) can be caused by time spent out of the body and not being profused with blood or it can be caused by rejection. Thus (have I used that word enough?) a biopsy was in order.

4) In a heart biopsy, they actually take 5 small samples of the heart tissue and test them for cellular changes that would indicate rejection (i.e., that Ellis' immune system has recognized the heart as a foreign object and tries to attack it). It is protocol for there to be regular biopsies - 2 weeks, 4 weeks, 2 months, 3 months, 6 months, 1 year, 2 years, etc - unless symptoms indicate otherwise. Biopsy results come in numbers: 3A - acute rejection requiring immediate treatment; 1B - moderate rejection requiring treatment; 1A mild rejection indicating close follow-up and possible treatment; and 0 - no rejection, no treatment, and the option of reducing the current regimen of steroid medications.

We went to cath lab at 8:00 a.m. We returned with Ellis to the ICU at 1:00 p.m. We got the biopsy results at 5:30 p.m. Tense hours of waiting, our heads popped up out of our reading and crosswords and tetris with each set of approaching footsteps.

In the meantime (I'm stalling for dramatic effect – if we had to wait, you have to wait, too!), we've heard from the docs that he does, in fact, have a bacterial pneumonia that the antibiotics already on board should fight effectively. He has been running a low-grade fever today so hopefully that will resolve quickly.

Also today (if it’s driving you crazy, I suppose you could scroll down to hear the biopsy news!) we are doing a second run of hemo-dialysis because yesterday's was so successful, and because Ellis received so much dye and blood products in the cath lab. His weight is almost down to pre-transplant weight (he was 11.5 kg, he is now 12.2 kg) and his creatinine is down and his lungs are a smidgen clearer.

OK OK - the biopsy results are: (Drum roll, Ellis!)

Z E R O R E J E C T I O N !!!!!!!!!!!

"Ellis is a winner and he's our very own
Ellis Bergstrom you're the best the world has ever known!"

Ellis will be sleeping comfortably resting from his travels today and we are celebrating (quietly!) at his bedside some good good news that we were so hungry to hear.

The docs think that since the stiffening of his heart tissue is not rejection, he just needs the "tincture of time."

This three-in-one family has got nothing but time to heal, rest, celebrate, and renew our resolve for the long but hopeful road ahead. Thanks for your encouragement these last days and in the days to come.

Melissa, Sam, and Ellis

Friday, August 4, 2006 6:01 PM CDT

UPDATE #2: 9:48 p.m. Sunday
-first 4 hours of dialysis completed and he sure is skinnier, but unfortunately no change in the lung-fluid issue yet
-battling sedation and pain management all day with increasing variety of meds and adult-size dosages, yet ellis is still miserable. our anger and tears have been communciated with the medical team throughout the day, but it just seemed no matter how they reacted, we never could get on top of it. I have never felt such rage, grief, and helplessness - the least we can offer him is peace. theLEAST, and I haven't even been able to give him that.
Tomorrow 8:00 a.m. - another trip to the catheterization lab for his first biopsy of his new heart to check for rejection. They will also be looking at three other connection points between Ellis and his new heart ("anastomoses") to see if there is any other narrowing that can explain the continued fluid in his lungs. We will update tomorrow afternoon when we find out the results of the biopsy and any other information.

UPDATE: 3:56 p.m. Saturday

-bronchoscopy showed significant fluid in lungs and possible pneumonia
-thyroid has begun to fail, so we are adding medicine to correct that
-his stomach is still not functioning so we are not yet able to feed him
-the doctors have agreed it is necessary to move forward with dialysis beginning today. hemo-dialysis (through the blood) to help clear toxins and draw out fluid and hopefully stabilize Ellis over the next few days.

Please hold our dear Ellis in your hearts and send him strength.

~ ~ ~
The Yellow Tulip
a poem by George Swede

For weeks
it struggled
through the hard crust
of the spring earth
and a foot
of air

Just to be
scorched
by the sun
jolted
by raindrops
blasted
by the wind

But on this gentle
May morning
as it opens
yellow petals
to the sky
Nothing else matters

~ ~ ~

We have been quiet on this page during these last few trips around the sun. Admittedly, it is hard at times to know what to say here, to all of you, to Ellis, to ourselves. The weariness, the frustration, the anger, the grief at days passing for him that contain no joy. He is alive - he has struggled and clawed and willed himself from the ground into the open air - but now come the rains and the wind and the seeming endless insults battering his already broken and weak body, his spirit.

I know you will all say - but look how far he has come in 10 days!
But it feels like a lifetime.

I know you will all think - it will get better.
But today, the day his face crumples with pain and his lips silently mouth "Mama! Mama!", the day he uses his one free arm to attempt signing - "All done" before he succumbs to another sedation for another procedure, it is not better.

I know you all believe that, like the flower, when he reaches that first gentle morning of Home none of this will matter.
But how do you explain that to him now?

Nothing momentous or critical or emergent has happened, and for that we are thankful. What has begun happening, however, is a stall in progress starting about Thursday morning. Meanwhile more concerns keep creeping into our focus and their complexity continues to grow.

Ventilator. Our baby still has a breathing tube with his beautiful pink cheeks taped up around it. We made some steps forward but are unable to proceed with any kind of extubation schedule until his lungs are in better shape, he is stronger, and gets more fluid balanced (less puffy). Pulmonology is now involved and will do a bronchoscopy tomorrow morning to see if there is anything they can find to explain his continued lung injury and lack of recovery. There is also a possible pneumonia developing so we have started antibiotics for that. They tried to do an ultrasound of his diaphragm muscle today to make sure that wasn't injured in the transplant operation. In order to do that, however, they needed to disconnect the ventilator for a few moments and watch him attempt to breathe on his own. He didn't. His oxygen levels dropped rapidly as we all watched him struggle and writhe on the bed, but no breathing. He is so tired and weak. Things looked so great the first half of the week that everyone predicted being off the ventilator by today. Now no one is predicting any sort of time frame. Hopefully we can get some more specific and helpful (i.e. treatable) information with tomorrow's procedure.

Kidneys. Ellis is peeing up a storm, but the kidneys are still not actually filtering any of the toxins out of his blood so lab values like creatinine and BUN continue to rise. The anti-rejection drugs are so hard on that kidney function, and unfortunately we had to go up on his dosage today to maintain correct blood levels.

Blood. Not only did pulmonology get involved today, but so did hematology. "Ellis is a very complicated young man", they reminded us. They brought some possible answers to the ongoing low platelet issue (and his corresponding low red blood cell levels, too). Ellis has developed an antibody that destroys platelets - a reaction to all of the blood products he received last week. It makes transfusing him in the future not such an easy decision. They are also concerned that there are platelets clumping in his pulmonary artery stents and also possibly in his new heart. When this happens, blood flow is impaired. They can also injure the red blood cells squeezing past, so we see these torn cells in his urine, his stool, etc. Ellis and his amazing body are doing the best they can to counteract - his bone marrow is producing both kinds of cells as fast as he can and releasing them too soon - so now they see immature platelets and red blood cells trying their best to do the work. Not many solutions at this point, just something we all hope will resolve with time and healing of the other major organ systems.

Meds. We've added a few. More pumps, more side effects, more drugs being thrown at this little boy to support him. The protocol for two of his transplant meds is for nurses to wear gowns, masks, and gloves whenever they handle the syringes because the drugs are so cytotoxic, or basically low-level chemotherapy.

Skin. Ellis is a sensitive guy (he gets really sad when he hears slow, emotional music like Eagle's Wings or Ave Maria or Brahms' Lullaby). His skin is sensitive, too. His poor torso and arms and face - wherever there has been tape or adhesive of any kind - there are open sores, blisters, bruises. It will heal, of course, but it is so hard to see.

Awake. Ellis is awake! He takes naps, he awakens, he opens both eyes for a few seconds at a time. He tries to talk, he tries to sign or to point, he squeezes your finger with all his might Too much conversation around him does agitate him a bit, so we have been speaking slowly and softly with low lighting. The only thing that seems to calm him is music on the CD player - guitar, children's songs, any sounds besides machines.

Heart. Ellis has a new heart! It is doing well. We are thankful for that.

Us. Sam and I are trying so hard to embody strength and optimism and patience - to be that for Ellis and with Ellis. Another "heart mom" friend of mine passed on the analogy of the egg. We are as strong as an egg. We are not strong like rocks - hard and cold all the way through. We are really the most fragile of vessels, we find strength to maintain that outer shell when it is most needed, but when the pressure shifts, we break, too. Your support and participation in this journal, this bridge of caring is sustaining us.

The Cosmos. We do try to realize the bigger world around us - how blessed we are to have Ellis with us today, how blessed we are to have each other to lean on, how blessed we are to be in this place at this time with these wonderful doctors and nurses. But today, it is hard.

I'll end with another poem. "Poems?", you might be asking right now. Sam and I were graced by a poetry therapist on Wednesday afternoon. She brought us these texts and invited us to ponder and connect in whatever way was helpful. We are continually reminded of the beauty that surrounds us and the hope that we have for Ellis to have joy again in his life, to know this amazing world, and all who love him.

~ ~ ~
But Not Today
a poem by Brenda Neal

Sometimes
I can let go of the past
a past locked behind the doors
of painful memories.
But not today.

Sometimes
I can accept the reality
that is me
and journey headlong
into the unknown.
But not today.
Today change comes hard.
I wear my feelings
on my sleeve,
and nothing seems right.

Sometimes
I feel I can
weather anything
tackle anything
do anything.
But not today

~ ~ ~

Love,
Sam, Melissa, and Ellis

Wednesday, August 2, 2006 6:24 AM CDT

Good morning, all!

As we begin week 2 of this crazy thing called post-transplant life, our mode of care is shifting. No longer in the "do anything just keep him alive" focus, we are now in the "stabilize, normalize" portion of our stay.

We are done with the dramatic days - which are both exhausting and exhilarating, experiencing now the subtle shifts of daily life in the ICU.

Yesterday was a day of some of these tiny movements forward and a few movements back. I keep a notebook where I track some of the numbers, med levels, ventilator settings, etc, so I can see for myself the progress. Here are some highlights:

Meds
Ellis was on 10 "drips" as of yesterday morning (continuous i.v. infusions) - we're down to 8 as of this morning! Gone are two biggies: cisatracurium (the paralytic that was keeping him still while his chest was open and to cut down on the workload for his new heart) and epinephrine (a major heart pumping medication not without it's nasty side effects). Results? Ellis has been AWAKE!!! Ok, not like lucid or anything, but opening his eyes to a puffy squint - squeezing our fingers - stretching his legs a bit - and even raising one arm off the bed to "find" our finger if we remove it from his grasp. I cannot even begin to describe the wonder of interacting with him again, it makes my heart ache for the hugs and kisses and laughter we have ahead. Taking away the epinephrine probably means we can start feeding him through his tummy again, rather than i.v. nutrition - they might start that today (if only to get me to stop nagging them about it!).

Ventilator Settings
Ellis had been on some Nitric Oxide through his ventilator to help dilate out the pulmonary arteries even more. That has been weaned down and finally off yesterday evening. To ward off evil spirits, we left the machine in the room overnight but hopefully one more contraption will go bye-bye today. We've also been able to move (slowly!) down on the amount of breaths the ventilator gives him per minute (from 30 to 28 to 26 back to 28 back to 30 to 26 back to 28 to 25 - just yesterday!). It's an exasperating process, especially because his breathing is so interdependent on his kidney function - something I've never quite understood, but it sure inspires wonder at the complexity of our bodies.

Pee-pee-pee All the Way Home
Yes, folks, he's still peeing! Those darn kidneys have a tendency to pout for a while when they don't get all the blood and oxygen they want, and at the same time get exposed to new anti-rejection drugs that stress them out. The renal team stops by every day and says "no dialysis yet". Having been there done that in 2004 we're obviously hoping to avoid more trauma and invasive procedures and infection risks. It's a precarious balance of number watching and supporting him with medications. He's on "max diuretics", so they're doing all they can medically to help his kidneys. His weight was down this morning by 0.7 kilograms, so that's an encouraging sign (he's gained 2.5 kg this last week). He is SO puffy, it's hard for him to open his eyes when he wants to. His creatinine and BUN (blood levels they watch that indicate kidney function) are both up again this morning, a discouraging sign. But that is the PICU dance - one step forward, one step back, two steps forward, one step back - but you end up ahead.

While all these little pieces all have to fall into place eventually, we're trying not to lose sight of the big picture - what an amazing week it has been! Leaps and bounds each day. Here's to a new week of some steady strolling!

Melissa, Sam, and Ellis

Tuesday, August 1, 2006 8:02 AM CDT

ELLIS HAS A NEW HEART!!!

One week ago this exact moment, Ellis was rushed down the hallways of the PICU from the O.R. in the most fragile state he's ever known.

One week ago the doctors and nurses did not know if he would survive and were working so desperately to save him.

One week ago a family lost their dear child and found, in the midst of their grief, the ability to think of others and do what they could to save other children.

One week ago Ellis was given a new chance because of this amazing family whom we will think of every day we get to be with our most precious son.

One week ago this chorus began, softly and shakily, our whispered prayer - ellis has a new heart - ellis has a new heart. As the events unfolded over the next few days, the chorus got louder, more confident and strong with each hour - Ellis has a New Heart! - Ellis has a New HEART!! - and now we can shout and dance and sing: ELLIS HAS A NEW HEART!!! ELLIS HAS A NEW HEART!!! ELLIS HAS A NEW HEART!!!

Thank you for whispering and shouting and dancing and singing with us!

Melissa, Sam, and Ellis

Monday, July 31, 2006 9:11 AM CDT

UPDATE: 3:46 p.m.

Breaking News - Minneapolis, MN - AP Wire Service

ELLIS HAS A NEW HEART! And it is tucked in and staying a while - our beautiful boy and his manly chest are all stitched up and ready for hugging. Ok, not quite ready for hugging, but definitely one step closer. Not only can we now sit him up a bit in his bed and drain some of the fluid in his face (even his EARS are puffy!), but we can start WAKING HIM UP LITTLE BY LITTLE and see his big brown eyes again! This should also just help heal his whole body, including the kidneys and the platelets. For now, though, he's soundly sleeping from the anesthetic from the closing procedure, so we'll have to wait a bit longer for some awake time. (Plus he'll still be sore and ticked at the breathing tube, so they will still keep him comfortable, of course.) Every day more good news! One of the cardiology team said that this is pretty much "best-case scenario" as a recovery timeline from needing ECMO during a transplant. That's pretty impressive and makes the little steps backward not seem so frustrating. We are having another day of celebration as we approach ONE WEEK anniversaries today and tomorrow morning! ELLIS HAS A NEW HEART!

ORIGINAL MESSAGE: 9:11 a.m.
Good morning!

Sam and I just popped in the SONG OF LOVE (remember you can hear it by following the link at the bottom of this page) and are sipping our coffee here at the bedside, slowly waking up and chatting with the morning round of doctors since 6ish.

Sunday was very quiet all around. A few minor complications with his arterial line where they measure his blood pressure in "real time" rather than with the cuff, so they had to re-wire the line, a fairly minor procedure all things considered. Other than that, not a lot of attention.

If there was an "Ellis Gazette", these would be the top stories:

ELLIS HAS A NEW HEART! (Maybe in the "week in review" section)

WHERE HAS ALL THE PEE-PEE GONE? (Headline, for sure.)

His urine output has dropped off quite a bit over the last 24 hours and this is concerning for all involved. His weight keeps going up and he has fluid making him puffy on the outside and swollen on the inside, especially lungs. We've put cucumber slices on his eyelids (after washing the veggies with a germicidal wipe!) and even put his hand in warm water like the old slumber party tricks of more innocent times. Both actually seem to work a little bit. We did bring in a decorative fountain, too, that is soothing him and hopefully inspiring him to pee pee pee all the way home.

PLATELETS AGAIN CREATE STICKY SITUATION (Investigative Journalism)

We've been chasing bleeding issues since last week, most of which have been resolved (less bleeding, less blood needed!). However, those darn platelets just can't seem to "stick", so to speak. Continuing to transfuse the darn things also adds to the fluid overload, too. As the doctors are becoming more and more concerned, some of the possible reasons and subsequent testing started to sound a bit familiar to Sam and I. I pulled out my notebooks from our 2004 hospital stay and began paging through my medical scribblings. Interestingly, we had this exact problem after his first surgery - seemingly unresolvable low platelets and no clear answer from the array of medical testing that ensued. I showed my notes to the staff doctors yesterday and we all seemed to breathe a bit easier, as it just might be Ellis and his body telling us he had a bit of a rough week. Two years ago it seemed that when his body began to stabilize and they were able to start feeding him, his platelet count immediately resolved. Let's get things rolling here, so we can get all these pieces to fall into place!

PARTLY SUNNY WITH CHANCE OF CHEST CLOSURE (weather report)

Dr. Herrington has been continuing to check on Ellis since taking him off ECMO (Yippee!) on Friday (as well as squeezing in 2 more lung transplants - phew!). She had originally wanted to close his chest on Sunday, but thought another day of peeing and healing and rest would do everyone some good. So here we are on Monday with the chest closure still on the O.R. schedule for the day. Like all forecasts, though, everything can change with the wind. Ellis is almost an entire kilogram up in weight from just yesterday, so his heart is probably still swollen, too. He has to have a washout today anyway, so the O.R. team will be here sometime in the next few hours to kick us out for a while. (They try to wash out the chest cavity every three days to prevent infection, and his last one was Friday with the removal of the ECMO cannulas - YIPPEE!) We will keep you posted as this front continues to move through the area.

That's the news from Ellisville, stay tuned for more exciting developments!

Melissa, Sam, and Ellis

Saturday, July 29, 2006 10:53 AM CDT

Another wonderful morning here with Ellis!

Quiet, restful night for everyone with incremental changes - all good: decreased his epinephrine several times over night and all morning with no lowered blood pressures; turned the pacemaker to "back-up" rate because his heart is handling all the rhythm issues perfectly; and IXNAY on the EASTYAY in the UNGLAYS! That is, NO YEAST INFECTION IN HIS LUNGS! We don't even have to stress out his kidneys with an anti-fungal drug. The "infectious disease" team signed off this morning with a grinning flourish and wished us well (and offered some great tips for infection control the next time we bring Ellis to the Mall of America!).

We're still replacing blood products, especially clotting factors like platelets; watching the kidneys as his creatinine is still on the rise (but there's still liquid gold pee!); and watching his lungs for any changes - all in all, though, what a wonderful world.

Now that we are most definitely in celebration mode about the new heart, we wanted to share some pictures with you - please check out the photo album for some before and after shots of his manly pinkness! You'll see his legs (try to ignore the chest tubes), his lips (try to ignore the ventilator and fish-mouth tape), and some hugs (our wistful tribute to his first heart, that sustained him so loyally these last two years and four months). The difference in color is quite startling - we were so used to him being a purple-y blue - that to look back now is a great reminder of this new life he has been given.

THANK YOU and prayers are with the donor family whose life this week must have been unimaginably difficult. We are in awe of their ability to act so generously and graciously in the midst of their profound grief.

THANK YOU to all of you! Your notes and presence just by checking in have been so very valuable. The opportunity to process all these events through journaling has been therapeutic for us, but most of all your entries are so incredible. We read them to Ellis - I know he can hear us and hear YOU! - and they are just the right antidote to our sometimes lagging spirits and post-mountaintop weariness. Sam and I sometimes break the golden rule ("don't look behind nor too far ahead") and your voices remind us of today, of being fully in this moment - this quiet peaceful moment of feeling a slight squeeze of my finger in his pink chubby hand. Thank you for being with us today and through all of these days.

We don't want anyone to suffer withdrawal symptoms if our journal entries start to go from every few minutes/hours to once a day, but really no news is good news this weekend. When the new week starts with Monday morning, the action will pick up again with chest closure, moving more aggressively on medications and ventilator settings, etc. We thought the new pictures would help and don't forget the link below to some videos and of course his hot-off-the-presses SONG OF LOVE!

Singing and swinging,
Melissa, Sam, and Ellis

Friday, July 28, 2006 9:40 AM CDT

UPDATE #4: 8:25 p.m.
Peaceful rest with a brand new beating heart making him pink and warm and stronger each day. All went smoothly with the ECMO removal. Ellis will have his chest remain open (as it has been since the transplant) till Monday to let the swelling go down. Quiet weekend ahead (with slow moves to decrease medicines and ventilator settings already in progress!)

"...that ellis is a winner and he's our very own!"

Our baby has a new heart!

UPDATE #3: 4:14 p.m.
THE O.R. TEAM IS IN HIS ROOM AT THIS VERY MINUTE TAKING HIM OFF ECMO BECAUSE HIS HEART IS READY TO BEAT ON ITS OWN!!!

We did the "test clamp" from about 1:07 to 2:00 or so. He did so great - so fantastically strong and steady - they were on the phone 20 minutes into the trial with O.R. scheduling the "decannualization" and the ECMO nurse has been packing up her supplies ever since. Most of the medical team discussed gardening for the last half hour! They did an echocardiogram during the trial and Jim - the "echo guy" - had a smile that lit up the room (normally he's a very reserved quiet type). Looks like the heart function looks better with each day and the lungs are also getting BETTER!

In fact, the yeast sample was deemed "rare, possible contaminant", so they're running a second one just to be sure. Could be just a round of preventative anti-fungal meds and no slow down on recovery.

WHAT A DAY!
What a kid!
What a team!
What a miracle. The new heart. Ellis has a new heart. ELLIS HAS A NEW HEART!!! OUR BABY HAS A NEW HEART!!! (Just had to finally celebrate!)

Melissa, Sam, and Ellis

UPDATE #2: 12:39 p.m.
We are still holding strong and steady! The 11:00 gas looked fantastic, so much so that they even went down a bit on the ventilator support...we are looking so great. Dr. Herrington is getting a quick 15 minute lunch (she just got done with another procedure next door, she squeezed that in between checks on Ellis!). When she gets back we'll clamp off the circuit and watch for an hour. If all is stable, well - I won't type that "out loud" just yet.

In the meantime, Paula the transplant coordinator came in with a package rushed to her for Ellis from the Songs of Love Foundation. Songs of Love coordinates with composers/songwriters/recording artists to write songs for and about critically ill children. We sent them a description of Ellis - his challenges and his joys - LAST WEEK. They read about his transplant on this very website and rushed him through the process so they could be a part of this story and his recovery. We popped it right into the CD player and we all danced - Sam, me, grandma Kay, the nurses, Ellis, and Dr. Herrington. It is happy peppy reggae music with lots and lots of drums! We'll try to figure out ASAP how to upload the song so you can hear it, but in the meantime I've written the words down for you below so you can be inspired and dance with us these next hours - Ellis will keep the beat!

Ellis swings on the swing set
no matter where he is
and this is no jive, he can count to five
he's just one of those kids

ellis loves to hear music
especially the drums
he has his own set that he can play
so maybe it's a drummer that he'll become

and mama and dada are with him every day
he knows that slow and steady wins the race
and his turtle mascot helps make the case

that ellis is a winner
and he's our very own
ellis bergstrom you're the best
the world has ever known

he sings his songs and he claps his hands
he answers "Yeah!" or "No!"
he reads books and he dances and he stamps his feet
ellis, we love you so

and mama and dada are with him every day
he practices his ABC's
I bet they sound a lot like these:

a b c d e f g h i j k l m n o p q r s t u and v w and x y z

ellis is a winner and he's our very own
ellis bergstrom, you're the best
the world has ever known

2006 Songs of Love Foundation
words, music, and vocals by Thomas Jones
www.songsoflove.org
THANK YOU THANK YOU THANK YOU THANK YOU

UPDATE: 10:52 a.m.
We are still holding at 50 percent ECMO support as he had one episode of a drop in blood pressures during a routine nurse care of his chest tubes. Dr. Herrington is still smiling, though, so that is a very good sign. They will run a blood test to check his lung function at 11:00 and see where we go from there. His chest x-ray was worse this morning and has been getting worse since his trip to the cath lab - the "re-profusion injury" has been the theory, but today an airway fluid culture came back positive for yeast, so they're re-checking. Let's hope for NO infection! But it doesn't seem to be holding us back on the ECMO so far. More soon!

ORIGINAL MESSAGE: 9:40 a.m.
NOW NOW NOW!

Less than one minute ago they turned the ECMO to 1/2 of the support it had been giving Ellis. They will let that sit for about 30 minutes and see what happens. They have meanwhile increased the Epinephrine medicine to give his heart some support and increased his ventilator settings to help his lungs.

In 30 minutes they will see how he looks and possibly test clamp. Doctors are in and out of the room and it's a bit frantic and hectic.

More soon!

Thursday, July 27, 2006 8:04 PM CDT

A slow and steady day of improvements in kidney, liver, lung and heart functions - we're happy, the docs are happy, and obviously Ellis is happy. We turned on an Elmo video this afternoon and as soon as the theme song started ("La la la la, la la la la, Elmo's world!") his breathing rate jumped above the ventilator settings to a twice-as-fast rate! He was very excited!

With every passing hour there is more pee, better liver function, less bleeding, greater lung response and of course that brand new heart pumping away - every doctor strolling in had a smile a mile wide today and nothing but good news.

So tomorrow will be a big day. (AGAIN!?!?!) The R&R will last through the night and at some point tomorrow (depending on Ellis's night and Dr. Herrington's surgery schedule) they will do a "test clamp". That is, they will temporarily turn off the ECMO machine and see how Ellis picks up the workload with his own heart and lungs. We don't know what time or what exactly this will show, but we will update as soon as we have a time frame so you can all send wave upon wave of your powerful prayers.

The results of this "test clamp" will range from an immediate reinstatement of full ECMO support as it is obvious his heart is not ready, and we will give him more rest and try again the next day. Or, as the surgeon suggested, "if he looks good, we'll take him off the machine right here tomorrow." I cannot believe the nervous excitement and trembling I already feel. To get ready we've been listening to some peppy music and will have the Elmo videos for him tonight.

In the meantime, we have been gathering up little bits of "WOW" moments that we just have to share with you -

1) Sam was able to wear the exact same clothes from Sunday through early this afternoon! The entire medical team was very impressed with his stamina and fortitude.

2) Neither Sam nor I have been outside of the hospital since the transplant call came on Monday afternoon. In fact, we have never even been on a different floor of the hospital than Ellis! This means we have a wonderful support team of immediate family surrounding us and ensuring that we eat and sleep and do not have to leave his side for a moment.

3) Ellis was born on March 25, 2004. He was baptized on April 25, 2004. He was listed for transplant on April 25, 2005. He received his heart on July 25, 2006. Can't wait for his 25th birthday!

4) We just surpassed 25,000 hits on this very website since Monday afternoon's announcement.

5) Ellis has not only all of us wrapped around his pink pinky finger, but the cosmos, too. The stars have been aligned for him since his unforgettable birthday:

~he was born at Southdale Hospital (not anywhere near our home in Maple Grove) because of our OB/GYN recommendation and thus he was in the Fairview "system" and immediately transferred to the University which is the only transplant center in the Twin Cities (Mayo does a fraction of the cases that the U does). he would not have survived a longer trip that first day (if he were born in outstate MN or surrounding states and not so near to a major cardiovascular center).

~the most wonderful cardiologist in the world happened to be on call the weekend that Ellis was born and thus Dr. Jaime Lohr was able to give us his original diagnosis, prepare us for that first interventional catheterization on his 3rd day of life and has been intimately involved and invested in Ellis since. We are so blessed to know her and have her care for our son.

~the University just this past year completed a major renovation of the catheterization lab area, including a brand new hybrid cath lab/O.R. suite which was exactly the facility that was needed for yesterday's procedure, a facility they did not have a year ago.

~Ellis was the FIRST hybrid cath lab/O.R. patient to utilize the facility in the type of procedure for which the facility was designed. the FIRST.

~the amazingly talented interventional cardiologist, Dr. Dan Gruenstein, (the guy who did all the crazy cath stuff yesterday), began his work here at the University THREE WEEKS AGO. the other doctor who has worked with Ellis in the cath lab is out of the country. THREE WEEKS AGO yesterday's much-needed and incredibly successful procedure would not have been possible.

~during the placing of the PA stents yesterday, an extra hand was needed, an extra-steady hand. the cardiac surgery fellow, Dr. Hassan Tettah, was asked to hold in place one of the PA stents and not move. He held this tiny 6 mm stent inside of the pulmonary artery for nearly TWO HOURS without a twitch.

~when you stay a while in the PICU, you have nurses that volunteer to be a "consistent" or even your "primary" nurse. Ellis was so truly blessed to have his PRIMARY nurse from the PICU be on the schedule for Tuesday and Wednesday, what were the most intensely fragile and frantic days for the medical team. Janice Kuball - you are the greatest! She is the employee of the month and her picture on the bulletin board is with Ellis!

~on the PICU you have all the specialist docs leading the decision-making (cardiology for us). however, you also have the "pediatric intensivist" or the "attending physician." Dr. Marie Steiner - a HEMATOLOGIST (blood specialist) - worked and sweated and gave orders and emptied chest tubes and spent hours and hours with Ellis during all these bleeding issues these last two days. we are so thankful for her presence and her energy.

~when Dr. Gruenstein reported to us the amazing success of yesterday's stent-placing, he also made sure we realized the extent of Dr. Herrington's skill. He was blown away by her ability to stitch in the donor's pulmonary arteries to what Ellis had left. Ellis had so little healthy tissue left to stitch and she reached so far out to the lungs with the donated vessels, he had never seen anything so skilled in his career. She not only performs miracles in the O.R. (2 for Ellis alone!), she follows him back upstairs and sits and works and cares for all her patients, no matter her exhaustion. Since Ellis's transplant, she has performed at least one other transplant in addition to Ellis's procedure yesterday as well as one or two other open-heart surgeries today alone. Her skill, her dedication to her patients, her unmatched honesty and wit, and her seemingly unending stamina continue to awe us.

Phew! Our Ellis is the center of our universe and I truly feel he has been blessed. Someone asked in the blur of the last days, "Are you prepared if the worst happens?" The worst? The worst I could imagine is if Ellis would have known nothing but fear and pain. But Ellis has known so much more than that - joy, love, warmth, laughter, puppies, swingsets, fireworks, drums!, family, God, and all of you. We have thanks unending for these last two years and so much hope - SO MUCH HOPE - for the years to come.

Melissa, Sam, and Ellis

Thursday, July 27, 2006 11:53 AM CDT

Another beautiful day with a beautiful boy! We are thankful.

A peaceful "nap" for mama and dada and there has been a pretty steady stream of doctors stopping in this morning, so it has been hard to get away to update.

The overnight report was quiet - we are in a "slow but steady" pattern, but with a few issues that we can now start addressing as the big picture has stabilized. Concerns are the kidneys (we need more pee!), the liver (we need more platelets!), the lungs (where the heck did all this great blood flow come from!?!), oh yes, and his new heart.

Kidneys: We have repeated "This Little Piggy" a gazillion times with a slight alteration - "...and THIS little piggy went PEE PEE PEE all the way HOME!" We have whispered talk of waterfalls and dripping water faucets in his ears. The word dialysis has been mentioned as a possibility (Ellis has been there done that in 2004), but so far he's been able to hold off the infamous "renal team" (they travel in packs and seem to all prefer bowties). They've been checking in yesterday and today to let us know he does NOT yet need dialysis. Luckily for Ellis, they can take off some fluid with the ECMO machine, and might at some point. But not right now and that's all that matters.

Liver: Ellis has a cranky liver. It just isn't quite ready to regulate all the coagulants which he really needs because of all the blood thinners they have to give him with the ECMO support. Probably that will resolve more quickly when we're off ECMO, but again, it is something they're watching carefully and are replacing mostly platelets today, not as much red blood cells (yay! less bleeding!).

Lungs: Ellis has what's been termed a "re-profusion injury". That is those darn lungs have never known blood flow like this. So for a little while they will be a bit wheezy and fluid overloaded but will recover with time (and with some more aggressive fluid outputs - pee pee pee all the way home).

The New Heart: For so long we just wanted to get to transplant day and could hardly see beyond that. Now it seems we can hardly celebrate this gift as much as we should because of all that has happened since. But today brought some wonderful news: this morning's echocardiogram showed fabulous function of both the right and left ventricles!!!!!!!!!!!! Is that enough exclamation points? Every day brings progress, brings more good news, more talk of coming off ECMO, off the ventilator, out of here, home, and a future.

Slow and steady wins the race is what Ellis has always done and he continues to set his own "pace".

Still not completely sure of the plan for today - there might be a quick test this afternoon of shutting off the ECMO and seeing what he can do, but more likely is just more rest and relaxation for our tough kid.

We'll update more later this afternoon - we have some fun anecdotes and amazing tidbits for you!

Enjoying another turtle-rific day,
Melissa, Sam, and Ellis

Thursday, July 27, 2006 1:17 AM CDT

48 hours ago Ellis was beginning his transplant operation.

24 hours ago the ICU team was still hard at work to stabilize him for his trip to the cath lab and we were all desperately hoping.

Now he is sleeping peacefully with his loop-tape of Mama and Dada tucked by his pink, soft, perfect little ear.

Ellis had a very quiet afternoon and early evening. About 8 or 8:30, though, he had some "electrical" issues with his new heart that they've just been able to resolve for now with a pacemaker (he had temporary wires put in as is typical during transplant or other heart surgery). None of the "inverted T waves" or "junction rhythm" (or any of the other descriptions we don't quite understand) seem to actually affect him in any way - no blood pressure issues, etc. So he's just sleeping through them and the wonderful Cath Lab surgeon - Dr. Gruenstein - came in just to check on all this at about 11:30 tonight. Drove all the way back in after working with Ellis all morning to spend a few minutes bedside and fine-tune the pacemaker. He even had the energy and patience to sit down with us and explain what the issues were and put them in the context of everything else. Basically it's not something to worry about for tonight and is fairly typical of a post-surgery kid AND - he stressed this part - told us to get some sleep. So we're going to try for a few hours. We will be back to his side by 6 a.m. or so to be with him as the first doctors come in and as the nurse shift changes at 7.

The other thing we've learned about tonight (our fog is lifting and we're starting to ask questions and track different medical interventions/support levels) is this darned ECMO machine. It is an amazing piece of technology. Basically a longer-term-sustainable bypass machine, it circulates the blood and oxygenates the blood - the work of the heart and lungs. It has 2 large canulas (tubes) connected to his heart, one bringing oxygenated blood to the heart and out to the body and the other bringing the blood from the body through the heart and back to the machine. There is always at least one nurse in charge of Ellis (mostly 2 or 3 these last days) and then there is at least one nurse in charge of the ECMO (though there has at times been more there, too).

Ellis has been bleeding a lot these last days, though it has slowed considerably from this afternoon post-cath lab. Because of the operation(s) and because his liver is cranky from all the trauma, his clotting capabilities are a bit out right now. So Ellis also has 3 chest tubes that are draining blood from the chest cavity at all times.

His total body blood volume has been replaced countless times. I tried to ask yesterday afternoon how much blood he had lost, thinking it was a percentage of his total blood volume, but no. More than you would ever think possible - all of his blood over and over and over again. So if possible for you - PLEASE go donate blood! I cannot even begin to calculate how many bags of red blood cells, plasma, platelets, other blood products (all of which come from your basic blood donation and are separated and given individually) that Ellis has benefited from these last days. All the bags that come through our room have the words "VOLUNTEER BLOOD DONOR" stamped on them and I am reminded of the times that I have cancelled or postponed my blood donation because it was inconvenient or I was too busy. Now I am so thankful that others followed through on that wonderful gift.

Not quite sure of the plan for tomorrow. We will update in the morning when we get a sense of the direction.

Good night stars, good night air,
good night all you who love Ellis everywhere!

Melissa, Sam, and Ellis

Wednesday, July 26, 2006 7:03 AM CDT

UPDATE #3: 2:18 p.m.
"That was sweet!" That is an exact quote from our surgeon as she came to tell us about today's procedure!!! Ellis was amazing - everyone was blown away by his stability throughout, even when they had to temporarily stop the ECMO machine to insert dye, his new heart took over for a minute! Not only were they able to place a bee-yoo-tee-ful stent into the left pulmonary artery, they said it was so easy they decided to go ahead and put the right one in, too! "You have one tough kid", "Better than anyone expected", "When he's an adult we'll have to look at a different kind of stent" - those are the words from the surgeons!!! We are celebrating and smiling and they even gave us pictures of the before and after views of his pulmonary arteries that I'll have to scrapbook sometime - ONLY KIDDING! He's back upstairs in the PICU and is getting re-set-up by the big team and we'll be able to congratulate Mad-Dog on his most recent victory soon. The doctors here are so amazing. We are profoundly grateful. Restful day ahead, we'll update tonight when we know the plan for tomorrow - possibly do a test run of shutting off the ECMO! Till then - Elmo, storybooks, feet rubs, and kisses.

UPDATE #2: 12:38 p.m.
About 11:45 or so, the transplant cardiologist and coordinator came out and called Sam and I into one of the conference rooms to update us on what they had found. Confirming their suspicions, they found narrowing ("stenosis") at the connection points between the donor pulmonary arteries (PAs) and Ellis. Our new word that we've heard a lot of these last days is "anastomosis" which is the surgical connection that they make between vessels. So both PA anastomoses need to be opened up so that the heart doesn't have to work so hard to pump blood to the lungs. They are going to try ballooning the left one -very very gently - so as not to rip out any of those oh-so-new sutures from transplant. If they can sucessfully stretch it enough, they will place a stent that will hold it open. If they can't, we're headed to O.R. We are going to wait on the right side till they get closer to taking him off ECMO and Dr. Herrington, the surgeon, will do it then as it is more easily accessible for her than the left. We should know soon, I'm sure, if they were successful on the balloon/stent. The key word that we are holding on to from this mini-conference is "progress". More soon.

UPDATE: 11:01 a.m.
We just saw Paula, the transplant coordinator, and she let us know that they had just begun the actual catheterization a few minutes ago (after 2 hours of prep work!). We were able to follow Ellis and the team (of 10!) from his room through the myriad of hallways and elevators to the doors of the cath lab, he arrived there a little after 9. The transport went smoothly and he is now in their hands. She said there were about "18 gazillion" medical staff in there making sure that he is stable and asleep. We hope he is dreaming of swingsets and puppydogs.

ORIGINAL MESSAGE: 7:03 a.m.
Good morning to all.

Ellis had a pretty good night of rest, and thus we did, too. He had a few blood pressure "episodes", but all were fixable and he is sleeping away, pink as ever. Since today was such a big day, Sam and I came up with a great plan for last night so we could be more functional for him today: last night we read him all his favorite books, sang him all his favorite songs, and talked and laughed and made animal sounds and counted and spelled and practiced letters -

OH I AM THE LUCKIEST MOM...the nurse as I was typing above came out of his room and called across the hall to me at the computer - Melissa! Melissa! He's opening his eyes! - and I ran in there and we just had about 3 or 4 minutes of Ellis trying so hard to be awake, moving his toes, opening his eyes, looking around. We laughed and sang and told him all about the things we're going to do when he gets better and to stay strong, stay brave, stay with us. Sam and I had to take turns talking because we were crying, too, it was so wonderful to see his eyes again. His beautiful brown eyes.

Ok - (clear throat, wipe tears) - back to the night report. Sam and I spent a long time with him last night reading and singing and talking and we tape recorded it. Then when Sam and I could no longer stand vertical (exhaustion had majorly set in), we put it on "repeat play" and tucked it by his ear and he heard us singing and laughing and talking and reading books ALL NIGHT LONG! The batteries gave out about 15 minutes before we hurried in this morning to be with him again. Meanwhile, Sam and I were able to grab a cot on this 5th floor and crash for a few hours. We feel very ready to face today, yet another big day for our strong beautiful boy.

Today. At 8:30 the team will take Ellis down to a hybrid catheterization lab/operating room a few floors below the PICU. There he will have a catheter inserted somehow (I think they're still working out the details of that) into his pulmonary arteries. The theory of why his new heart is not working quite right is that those darn pulmonary arteries are too narrowed, too constricted and while Ellis' old heart was used to working under those conditions, the new heart isn't. The catheterization procedure will involve them putting some dye into his arteries and then inserting a small (understatement) camera INTO the pulmonary arteries to take some films and pictures of how they are working. Then they might decide to do one (or more) of three things: 1) add some more drugs to his repertoire to dilate out those vessels (flolan, nitric oxide, suldenafil); 2) balloon the pulmonary arteries to stretch them open; 3) place one or two stents (small coils) to keep them open. The stents might be placed with the catheter technology or Dr. Herrington, his surgeon, might do it in a more traditional O.R. way (with her talented hands).

We have already signed the consent forms for all of the above possibilities so they can act quickly if they need to. We've discussed with the doctors all of the possibilites for today. They have explained to us the range of things that could happen, just the traveling alone is one of the riskiest things to do - traveling with ECMO, chest tube drainage tanks, ventilator, 3 packed I.V. poles with 5 or 6 pumps on each pole giving him medicines and sedation, and of course a monitor and the team. They have promised to move slowly and carefully and the catheter surgeon and his heart surgeon have also promised these two desperate parents that they will do their best work and take good care of him. We are still terrified.

Ellis is now very much asleep, they gave him a bit more sedation since he was awake those glorious few minutes. We will go rub his pink feet (we can touch both feet!) and stroke his hair and we will update as soon as we can.

With great fear, greater hope, and the greatest love,

Melissa, Sam, and Ellis

Tuesday, July 25, 2006 1:18 PM CDT

UPDATE #3: 6:44 p.m.
Well the washout went as well as it could. The surgeon found some clots that they were able to remove and some bleeding spots that she was able to sew up. We've already seen a marked decrease in the bleeding from his chest tubes. And they switched out his chest dressing and the bedding underneath him and washed him up a bit so he looks A LOT better now. He was looking pretty gory there for a while, as was his bed. The surgeon just left with a smile and well wishes for a quiet night, and we second that idea. Sam and I are going to do tag-team bed vigil-ing and sleeping through the night so he can have some company. More tomorrow morning, early a.m., sounds like another really big day for Ellis in the cathterization lab/O.R. Good night and sweet dreams.

UPDATE #2: 3:45 p.m.
Ok, the bleeding isn't quite under control I guess. The surgeon is on her way and the O.R. team is preparing for a second "wash out" where they uncover his open chest and literally wash out the chest cavity to try to clear some of the collecting blood, remove any clots, and see if there's any surgical way to stop some of the bleeding (the first one was during the craziness of the morning). They are prepping right now and are scheduled to begin at 4:00. Thanks for checking in...

UPDATE: 1:51 p.m.
Our nurse - our wonderful primary nurse, Janice - just came out to say that the bleeding was finally, officially, under control and we are headed for a quiet night. Cath lab is scheduled for 11 a.m. tomorrow.

ORIGINAL MESSAGE: 1:18 p.m.
Our dear, sweet Ellis is very fragile, very weak, but very pink! We have never seen such skin - translucent glowing baby pink toes and fingers and the cutest pink nose in the whole universe. He is so incredibly beautiful.

There have been countless nurses, surgeons, doctors, technicians, lab assistants and machines helping Ellis today. He came upstairs about 8:00 a.m., though honestly we are in such a blur right now we can't quite track events very consistently. We waited at the hallway corner to see him, merely a glimpse as they rushed him into his room and started the long process of stabilizing his blood pressures and clotting factors and bleeding...only now has the crowd around his bed decreased to a mere 4-5 medical professionals at any one time, down from 15-20 for the morning.

We are overwhelmed, exhausted, so achingly sad for the emptiness of our arms that want to hold him and make this all go away. We are completely in awe of the medical team here, working so gracefully and swiftly to do all that needs to be done, more than we will ever know or understand.

There are a few spots of Ellis open to our touch - places not taken by i.v.s, chest tubes, ECMO catheters, other probes and lines - his forehead, a few fingertips, one set of toes. We have been taking turns being with him when the medical situation allows us to - just to whisper hello and let him feel us near. These moments have been brief, as his bleeding problems throughout the day have been constant; they have been transfusing a myriad of blood products to replace all that has been lost.

We will watch at his bedside through this day and through the night into tomorrow. The hope is that we can catch up with the bleeding issues and have a quiet evening for the heart to rest on the ECMO machine. When the heart is a bit rested (tomorrow? thursday?), they want to bring him to the catheterization lab to look at his pulmonary arteries. These are the arteries that have lived with tight bands for the last 2 years and are in pretty bad shape from that constriction. They might need to place a stent in the left PA to open its blood flow and ease the workload on the right side of this new heart. Hopefully this will lead Ellis to a functioning new heart and hope.

We will update tomorrow or if anything changes, but if there is no news, you can imagine us at his bedside (along with 3-4 medical professionals), softly singing and reading him stories and reminding him of all the wonderful fun adventures he has yet to have.

Thanks you immeasurably for your prayers and thoughts and messages. You are all so much a part of this with us.

Love,
Melissa, Sam, and Ellis

Monday, July 24, 2006 6:42 PM CDT

UPDATE #4: 6:46 a.m. Tuesday
Well. The heart is in and we knew the last update from the O.R. was taking a bit too long. Things are not going as well as they could be in terms of getting the new heart re-started, so Ellis is going to need a lot of support. Right now he is the most fragile he's ever been. He will be supported completely by a heart/lung bypass machine called ECMO. We will update later today when we know more. Please please please hold our Ellis in your hearts...send him all the strength and love and hope and courage you can.

UPDATE #3: 4:23 a.m. Tuesday
The new heart is almost done being sewn in, one more connection to finish - so they might actually start weaning him off the bypass machine very soon and allow the new heart to be perfused with blood and start pumping! Hopefully the new heart will be on its on by about 5:00 a.m. and we'll hear another update around that time.

UPDATE #2: 3:05 a.m. Tuesday
The new heart is here and they will be removing and replacing all in the next hour...Ellis is on bypass mechanically, but sustained with HOPE and LOVE surrounding him and the surgical team.

UPDATE: 2:10 a.m. Tuesday
Everything is going smoothly. Ellis went to pre-op at 11:30 sound asleep, went back to the O.R. at 12:09, was put (back) asleep and intubated by 12:30, and just a minute ago we were told he's just about ready to be put on the heart bypass machine and the new heart will be here in a few minutes. I don't know if anyone's out there at this hour...but we're reading your messages and so grateful for all of you. Sweet dreams for Ellis, steady hands for the docs, and safe travels for the last few miles for the team...

ORIGINAL MESSAGE 6:42 P.M. Monday

14 months, 4 weeks on the list...
2 weeks in the hospital...

a few more hours now...

and Ellis will have a new heart.

The surgical team from the University is traveling right now to wherever the donor and that grieving family is to do the final checks and give the final go-ahead to our surgeon back here. Please include the wonderfully generous amazing family that has allowed Ellis to have this chance today. To make that decision in the midst of such grief...please hold them close.

Ellis has been transferred to the PICU and is undergoing all the awful pre-op, pre-transplant testing - what seems like unending labs, i.v. placements, chest x ray, ekg, surgical scrubbing, etc.

We're about to give the first dose of immunosuppression medications (around 8 or 8:30) and then he is scheduled to head to the O.R. at 10:30 p.m. tonight, the heart is supposed to arrive here around 12 or 12:30, and then heading back up to the PICU in the early hours of tomorrow - pink as can be.

We will be updating as we can through the night. Prayers, Love, Songs, Celebrations, Tears, Dreams, and Fears are all welcome here. We're at the bedside and savoring each "mama" and "dada" and kisses and hugs and tickles for the next few hours.

Love to you all, send us strength for the night, especially the surgeon, the transplant team and the precious center of our world, Ellis.

Melissa, Sam, and Ellis

Wednesday, July 19, 2006 10:28 PM CDT

Hello, all you wonderful residents of Ellisville!

I can't tell you how much it brightens our day to get your messages on the website or in cards or emails - just to know you are thinking of us is so wonderful.

We are now well into Week 2 of our stay here at the University "Hotel". We've really moved in to the room, books on the bookshelf, clothes out of the suitcase and into the closet shelves, a few things taped to the walls, a nice throw pillow and blanket on the cot, a few touches that make it seem kind of sort of, ok, well not really home-y, but a bit more "us" anyway.

Medical News: Nada. We had an ECHO this afternoon to see if there's any changes and haven't heard anything about any results yet. It is kind of a nice change not being on the top radar of the cardiology staff, actually. It means Ellis is really stable and they're just playing the waiting game with us, not worrying about his every breath. It sure makes it quiet, though. Which is A-OK with us, especially because we know we'll be in good hands and have their full attention soon (soon soon soon - I'm not going to give up on that word).

Eating News: Ellis and his eating has been a saga unto itself over these last 2 years. He has really declined in his eating interest this spring and unfortunately that has only continued here at the hospital. The cardiology team, after knowing his increased heart failure the last month, asked us how his eating had been recently - as it is usually the first sign that kids give that their heart is starting to get tired! I knew that, but I never put the 2 things together, especially since he always ate GREAT for our wonderful speech therapist, Dana, at Gillette. The speech therapist here at the University said he wouldn't even try to get him to eat more until after transplant, just keep trying to give him lots of tastes of different foods and textures and encourage whatever he enjoys, which recently is cocoa, water with lemon, and ice cubes - strange, but true.

Therapy News: Well we've had OT and PT almost every day, usually OT in the morning and then a nap, lunch, and then PT in the afternoon. The only complaint we've had is the number of therapists you see. It seems like we've seen someone different almost every time! So it gets a bit confusing for Ellis to try to warm up to all these different people and then for them to understand what he should work on and what he can already do. We definitely miss Marno, Melissa, Melanie and Nicole and their wonderful, consistent work with him over the last 2 years. But the good news is we FINALLY have gotten through the medical red tape to bring him to the therapy gym in the next building on campus for some swinging good times and just for a change of scenery. Awesome! Until now the therapists just come to our room and Ellis is getting a bit bored with the limited range of activities that allows. So tomorrow should be our big field trip with the iv pump and a nurse escort, etc.

Sleeping News: Ellis is actually sleeping pretty good here at the hospital. He is kind of on a schedule of going to sleep between 10:00 or 11:00 (right now it's 10:42 and he's going out into the hall in his walker in his jammies with Sam to go ram around one last time before bed so maybe tonight will be later!), waking at 12 or 1 for a few minutes and then waking at 3 and 4 for a few minutes each time just to say "MAMA" and see my tired face and then he sleeps like a rock till 7, sometimes 8, and today till 9 because it was so dark and rainy outside, I guess. The nurses have been great about not bugging him too much in the morning and letting him sleep till he wants to get up. I sleep here every night on a cot and Sam has crashed here a couple of nights on the fold-out chair, but mostly goes home to get a good night's sleep and a nice shower, take out the garbage, grab the newspaper, make some coffee, get the mail, etc, and then he's here first thing in the morning before Ellis ever wakes up. The last couple of nights, though, Sam has left before Ellis has fallen asleep and as the good Scandinavians we are, our goodbyes tend to go on and on, it's still hard to split up for the night. Finally Ellis just said, "Dada?...Go!" That gave us a good laugh. And Sam tried not to take it personally!

Playing News: We walk to the playroom several times a day for the exercise and the change of scenery. Ellis LOVES to bowl with the plastic pins (check out the NEW PHOTOS in the Photo Album) and now has picked his second favorite activity, vacuuming. There is a mini-dirt devil red vacuum cleaner that he loves to walk around with and go around the nurses station and charm everyone he sees. It's pretty cute. We've met some wonderful volunteers here that just give of their time to sit and rock babies or play in the playroom or whatever the kids need. The first night we were here we got a strolling mandolin player that came by at bedtime to pluck some lullabies for all the babies. It was awesome. We've bowled a bit with a nice young man named Pavlo who is the quickest pin-setter in the West. Wonderful people you meet here...

Talking News: Ellis has several new verbal quirks he has picked up over the last week and a half. When he makes a basket on his Nerf set (thanks STMA marching band!), he yells, "OH YEAH!" (thanks Uncle Adam!). When he doesn't know what to choose or has to think about something he says "HMMMM" and rubs his chin! He can count to 3 verbally and to 5 with his fingers. He knows almost all his ABC's, with a few that are fuzzy like Q and Z and H is still "Heidi" (thanks Auntie Heidi!). He can say and identify his colors - blue, green, yellow, purple, orange, grey - but red is still "Elmo". He also has a great sound he makes when he puts puzzle pieces in or does anything that you say "push" or "squish" or "squeeze" or "pull" - whether its hard or not, he GRUNTS like an olympic weightlifter. It's SO dramatic and over the top!

Artistic News: Ellis has been coloring and scribbling up a storm. In fact, outside his room is a coloring piece he did of Clifford the Big Red Dog that got shown on the in-house TV show on Tuesday. Pretty cute. He also has been singing away to his favorite songs - She'll Be Coming Round the Mountain (he chimes in with YEE HAW, though it sounds like 'EE-'AH), and can identify several musical instruments - Tuba (doo-ba), Trumpet(hand to mouth and farting noises), Violin (VEE), Guitar (dada), Piano (mama), and of course his favorite - DRUMS!!!

Wow - I thought I didn't have much to share, but I guess I did! Really we are doing very well so far in this new adventure, mostly because Ellis is doing so well. He's very happy 99 percent of the time and that makes us so thankful. We had a little bit of a sad moment the other night, after Sam had left. Ellis asked "Dada?" and I casually said "Dada went bye-bye in the car." And there was a long pause during which I was folding laundry or something, not thinking much of that news. After a few seconds, Ellis said with a pleading sort of tone, "Me?" I turned around and he had these big tears in his eyes that started to roll down his cheeks as I tried to comfort him and explain the unexplainable. Something about how we all have bodies and sometimes they get broken like toys and we have to fix them and as soon as you're all fixed we can go in the car and go home. We both shed a few tears, but he seemed to accept that information a bit and was able to go to sleep (especially when I said Dada would be back in the morning and we could watch Elmo and bowl some more!).

So that's where we're at! One day at a time...the old cliche is oh so true. Ok it's 11:08 and Ellis is sleeping - good night and sweet dreams...

Melissa, Sam, and Ellis
P.S. Some of you wanted to know where to send Ellis some cards or stickers or books - that would be great! - the hospital address is:

Ellis Bergstrom
University of Minnesota
Children's Hospital
5A Room 5-216
500 Harvard St SE
Minneapolis, MN 55455

Wednesday, July 12, 2006 5:14 PM CDT

Well - Day Number 3 of being in the hospital and Day Number 3 of being Status 1A on the heart transplant list.

We are adjusting pretty well to hospital time and hospital life, kind of getting our hospital groove, so to speak.

Ellis is in good spirits, though it seems he is even more tired and worn out after a bit of a walk or play time.

He is doing some very light Physical and Occupational Therapies almost every day, but in very brief sessions. After a few minutes of walking or playing, he needs a nap, so we don't push him too hard. It sounds like later in the week we will travel down to the therapy gym and try out some cool stuff there (a swing, even!). He also got to attend the music therapy offered twice a month in the playroom where he played different drums and shakers and sang songs with some nice ladies who played the guitar - pretty cool. Speaking of playrooms, there are two on the children's floor and they are stocked with books and toys and balls and all kinds of neat things. We even had some bowling last night - with the plastic pins and a little plastic bowling ball - Ellis would giggle everytime he would knock down the pins.

Medically, there ain't nothing much to say at all. We tried to get labs yesterday and after the second attempt with no juice, we said ENOUGH. Poor kid. He has this darn PICC line with 2 lumens, which should provide access for labs as well as allow his Milrinone to go in, but that 2nd lumen hasn't worked for a while. We were tentatively set for the O.R. today to re-wire the line, but Sam and I raised some concerns about putting him through another ventilator tube, general anesthesia, etc, so they canceled it and are trying to discuss all the options with the doctor who would do the procedure, see if there is something less invasive and less risky for the kid. (We don't really want to repeat the scary, if brief, episode with the anesthesia 3 weeks ago.) Anyway, it is nice to know the medical team is listening to our opinions and respects us enough to even change their minds about things or at least re-visit all the options to make sure we're completely on board. We might have to do something later in the week about that line (because to get it to work would mean no "pokes" for his labs), but we'll keep you updated.

We're settling in to our new life gradually. Trying not to look too far ahead with the big question of WHEN on our minds every day. The transplant team told us about another family that waited in the hospital, too - for OVER A YEAR. We have been trying not to even imagine that, but of course your mind starts to wander at night, especially, or during his naps and it drives you crazy, the not knowing. But you just shake yourself out of that - no sense in looking too far ahead, right? - and back to today. Ellis is in a big red wagon at the moment - lounging with his kitty cat and bugging me to get going here so we can go on a walk around the unit. So I better boogie...

We'll try to take some pictures soon of our room and the therapy gym and other Ellis adventures.

Love to you all,
Melissa, Sam, and Ellis

Friday, July 7, 2006 11:49 PM CDT

Summer days are so sweet...

We have been enjoying our days together at home these last two weeks, trying not to think about Monday...

*Ellis attended the last 2 parades of Sam's season with the Marching Knights of St. Michael-Albertville High School. We found some good shade not too far from the the van and stayed far far away from clowns and all was well.

*Ellis went to VALLEYFAIR and actually rode a few kiddie rides! (And got his caricature drawn!) It was all a bit overwhelming, but he enjoyed the imax movie with the "dums" (drums).

*Ellis has enjoyed good quality time with both sides of our family. Swinging, talking, walking, napping, rocking, dancing, singing, and lots of hugs.

*Ellis got to see "Dada" play in a band on the 4th of July and stay up late for fireworks. Very cool.

*Ellis has reached a very healthy 2-year-old level of annoyance with this danged i.v. Sam and I are also quite annoyed with the thing as it doesn't work as slick as it should, so we've had LOTS of home nursing visits to try to make it hold out till our re-admit. It seems about every other day involves a nurse call early a.m. and then waiting around all day for her to show up then spending an hour or so messing with the poor kid then a nice long nap to recover. Dang. Not cool. Knock on wood we're going to make it to Monday without having to replace it or anything that would require an extra hospitalization or E.R. visit.

*Ellis saw the transplant team in clinic last week and had another ECHO and labs and EKG and Chest Xray, the works! Results are pretty mixed and the decision to admit us on Monday seems to be the agreed-upon next step with all parties involved. Even us, I suppose. As much as we dread spending the rest of the summer in the hospital, we know it's the best place for him to be. Adults that go home on Milrinone (this new i.v. drug) get a defibrillator and/or a pacemaker implanted because of the risks of arrythmias and such. SCARY! That would be obviously too risky for Ellis to undergo, so we're just keeping a close eye on him and his multiple monitors at home and will probably breathe a bit easier when medical assistance is steps away.

*Quiet weekend ahead to pack up. Monday morning 9 a.m. the home service will come by the house to pick up all our medical equipment that we won't need for a while and at 11 a.m. we get admitted. The first item on the agenda will be this finicky i.v. - unfortunately it might need to get replaced, so hopefully something they can do with local anesthetic, but possibly another trip to the O.R., I suppose. We'll see. We'll try to keep y'all posted as much as we can - especially if any procedures get scheduled, but we'll be back at status 1A as of Monday and maybe a post soon will have some well-waited-for-news.

With hope,
Melissa, Sam, and Ellis

Sunday, June 25, 2006 11:43 AM CDT

We're HOME!

We slept in our family bed last night and it was glorious. Ellis fell asleep before we even left the parking ramp and was darn thrilled to wake up at the house with the welcoming party of "Gaga" & "Gum" (Grandma & Grandpa Bergstrom), "Gumma" (Grandma Kay), "Rah-rah" (Auntie Sarah), and "Baby" (Cousin Grace).

Friday afternoon we got transferred to 5A, which is the general pediatric unit, not ICU. We were in protective isolation because of his list status (can't get sick now!), so we still got to have our own room, thank goodness. The nurses were very wonderful and started teaching us how all of the new machines worked.

So Friday and Saturday were long days of paperwork and training/education for Sam and I. We went to a class on Friday afternoon about how to care for Ellis' i.v. - dressing changes, tubing changes, med pump, etc. It was incredibly overwhelming. Luckily the nurses back on 5A helped us even more. We talked through their steps, their helpful hints, etc and then started trying some of it ourselves. We even did a complete dressing change on Saturday - scary and slow, but Ellis was pretty patient.

I have said to Sam a few times - maybe we shouldn't go home! Ellis just seems more fragile to me than ever and the hospital, though it can be so miserable, is a safe place with lots of qualified professionals watching over his every breath. But we have lots of support here at the house, too. Our home nurse should be here within the hour to help us with this first tubing change and I'm sure we'll feel more confident in a few days. I remember feeling this same way when we came home 2 years ago with the oxygen, sat monitor, and feeding pump, but eventually we were out and about, just taking a few more precautions.

So we have a handy-dandy bag for the i.v. pump that is now part of Ellis 24 hours a day. We've figured out how to attach it to his swing (very securely!) so he's spent several hours out there already. He also has been able to walk around a bit in his walker with one of us walking behind him carrying the pump. It seems to work well for now at home, maybe we'll be brave and venture out to a quiet mall someday this week. Maybe not, we'll see...

Ok. Here's the plan, then. We're home now for a mini-vacation from the hospital, basically. We are back to status 1B until Monday, July 10, at which point the plan is to re-admit us into the hospital for the long haul. At that point we would go back up to status 1A and live at the hospital till the heart comes. I suppose the plan could change between now and then (if Ellis gets sick or anything, we'll be back sooner!), or they might be able to appeal to the UNOS (united network of organ sharing) board to get a waiver for Ellis to wait at home on status 1A, I don't know. We will also go to clinic on Thursdays to check in with the transplant team and have them see how he's doing being at home.

Till then, we'll be dancing, singing, reading books, taking glorious naps, and enjoying time as a family.

Thanks for all your thoughts, prayers, gifts, and messages this last week - we'll update later in the week with our clinic visit results and any updated plans between now and then.

Love,
Melissa, Sam, and Ellis

Friday, June 23, 2006 10:40 AM CDT

Hello, all.

Thursday was a MUCH better day all around. Ellis was still a bit cranky and sore from his trip to the O.R. Wednesday night, but perked up mid-afternoon. He also got his seemingly unavoidable post-O.R. rash, so he was itchy a bit, too.

Thursday also saw a brief visit from Goldy the Gopher (who had a slight body odor problem!) and a trip outside in the red wagon for the annual Turtle Derby (turtle races) that raise funds for pediatric equipment and services here at the hospital. Ellis LOVED the turtles and the change of scenery, but unfortunately was approached by a clown so we had to come back inside. Something about those darn clowns...

After our 20 minute jaunt outside, he came inside and slept for 3 1/2 hours. Our poor guy just doesn't have the energy he used to.

But he did eat 3/4 of a saltine cracker and 14 teaspoons of tomato soup last night and we had a bath in a little baby bathtub in our room. We wrapped his PICC line arm with plastic and tape and he let it hang outside the tub (probably because it was too heavy to lift!). He splashed around for about an hour and got lots of nurses and docs wet! It was great.

We've gotten some mixed results from different tests other the last two days that are pretty confusing for us and the medical team, too. I'm titling this list "Things that make you go Hmmm" since that's what everyone's been saying, usually accompanied by a furrowed brow and pursed lips and followed by a shake of the head and shrug of the shoulders.

1) Ellis's sats have been running in the high 70s/low 80s for the first time in months (with no oxygen or anything, just him breathing and looking quite bit pink-er). Hmmm.

2) The BNP test for heart failure (almost 3,000 last week; 3,800 on Monday) was re-taken Wednesday night after the O.R. and we were hoping to see a change of direction after adding this new i.v. drug (Milrinone). Well, they stop counting BNP at 5,000, so Ellis's official lab report says "greater than 5,000". Hmmm.

3) The ECHO that has been showing worsening heart function and some increase leaking in his aortic and tricuspid valves was also repeated Wednesday and showed no improvement. Hmmm.

4) Besides the trip to the O.R. and the clown (!), Ellis has had a subtle increase in energy and eating. Hmmm.

5) The Milrinone has been making his blood pressure drop, especially when he's sleeping, so they've been adjusting that dosage the last few days to keep his pressures up. Hmmm.

So how's this for a crazy plan: send us home.

Sounds logical, right? HA!

Basically there's not much more they can do from a medical standpoint without decreasing his quality of life. We've added all the meds with the least amount of side effects, and any procedure road would involve too much risk to his fragile heart. So they're going to get him as stable as they can and send us home to wait for the only thing that will really make him better, a new ticker.

Discharge might happen this weekend, but probably not till early/mid-next week and probably only for few weeks at most, then we'll come back in as they expect him to need more support sooner rather than later. And we will be discharged in a bit of a different state than we came in.

In addition to our 3x a day med regimen, feeding pump, and 02 monitor, we will be adding: a blood pressure machine to check pressures throughout the day and night; an i.v. with a continous drip of Milrinone and carrier fluid; some sort of heart rhythm monitor to guard against any arrythmias (a possibility with this new drug), and instructions to bring him to the E.R. with ANY change of condition/color/breathing/energy/pressures/rhythm/O2/etc.

(And I thought I wasn't sleeping well now when there's a nurse in charge of all that stuff!)

Anyway, the stay-sane-rule-of-thumb "don't look too far behind nor too far ahead" seems to keep getting more apt each day if that's possible.

We're thankful for today and thankful for the care he's receiving. And thankful for the multitude of medical professionals who come in to say, "I was thinking of Ellis last night and thought of this other possibility..." or "This morning I met with a few other doctors to discuss Ellis and..." or "I saw this stuffed bear in the gift shop and it looked like Ellis's favorite kitty so I thought I would get it for him..." or "I had to come over on my break and check in with Ellis for some smiles and thumbs-up..." or in the doctor's rounds that we overheard yesterday "Ellis would like to see the turtles today because his motto is slow and steady wins the race" followed by the docs that know us telling the newer ones and the students about Ellis and his story. It really feels like this amazingly large family that surrounds us here and cares for him (and us) with such love.

Then we have the privilege to check in here and see another family that surrounds us and cares for us on this "bridge."

Thanks for checking in. Hopefully the rest of the day will be pretty quiet, maybe a wagon ride or 2. We'll update if anything develops, otherwise hopefully update tomorrow from the general kids unit, not the ICU!

Love,
Melissa, Sam, and Ellis

Wednesday, June 21, 2006 11:57 PM CDT

Well, Ellis now has a PICC line.

We stopped feeding him at 4 a.m. for a scheduled O.R. trip at 12 noon. Unfortunately, we found out mid-morning that the O.R. bumped us to last case of the day - 4 or 5ish they thought.

Ellis was a wee bit hungry by then, but handling it well. Just kept very politely signing, "Milk?" or "Eat?" most of the afternoon. So one of us would jump in with a new game or song or other distraction and he would be content for a while. The requests got closer together as the afternoon wore on, and by 5:15 with no call from the O.R. that they were ready for us, we were all pretty ancy.

At 5:30 we found out we'd be going closer to 6. At 6 we found out we'd be going closer to 6:30. At 6:30 we found out FINALLY they could take us at 7:15 and we arrived down in the pre-op room at exactly that time. Ellis was pretty excited about the ride down in his crib, though a bit apprehensive. He actually fell asleep while we talked with the anesthesiologist in the pre-op room and we thought we were set. Unfortunately he woke up just as we were carting him through the hallways to the O.R. and cried pretty hard when they had to continue through the big double doors without us. The anesthesiologist later said he was pretty mad when they put him to sleep. That always makes me ache to think about what he must feel, how scared he must be.

The doctor placing the line is a pretty wacky guy. He likes to tell jokes (we actually saw him with a G-tube malfunction in the E.R. a few months back) and was very pleased to come out an hour or so after Ellis went in to tell us how great everything went and how quick and easy it was. He said they were just waking Ellis up and someone would come get us in about 15 minutes.

About 30 minutes later we were a bit edgy and starting to wonder when the anesthesiologist came out to the waiting room and said, "We're having some trouble waking Ellis up. We haven't been able to get him off the ventilator because he's not waking up. We just gave him such a little bit of sedation, I don't know but he just isn't responding normally. His liver must not be processing the sedation rapidly enough, probably due to his poor heart function."

The world seemed to go so blurry then. There were quite a few other families in the waiting room at this late time of day, but their conversation behind us just turned to mumbles as she continued: "we'll give him 30 more minutes and then we'll have to bring him up to 5C on the ventilator if he's not responding yet and they can figure out what to do next."

She left us standing there and I found myself staring at the little window in the door where she left. It had a diamond shaped pattern of etching in the glass and I just stared thinking as hard as I could come back through that door and tell me my son is ok and breathing and awake come back through that door and tell me my son is ok and breathing and awake come back through that door and tell me my son is ok and breathing and awake.

And she did. About 20 minutes (an eternity?) later. We sped back to be with him and stroke his beautiful hair and softly encourage him with his breathing and comfort his whimpering cries.

He's finally back in his room on 5C and sleeping with some restlessness. I think they're going to give him some Tylenol for his pain and meanwhile they've sent the lab to check some new BNP numbers. I'm sure we'll find out in a few hours or in the morning and let you know. We still haven't heard a definitive evaluation of his ECHO today either, the preliminary report was nothing changed - a disappointing result, but we're hanging on the word preliminary and waiting to see what they say tomorrow.

Wait and see. That's what we do best. Now we will try to sleep propped in some chairs next to his crib. He has i.v.s in both arms now and is pretty puffy from all the i.v. fluids, so he looks rough. I think he feels pretty rough, too. Good night, all, a better day is a few minutes away.

Melissa, Sam, and Ellis

Tuesday, June 20, 2006 6:44 PM CDT

8 years ago today...Sam and I were saying I do! I do! to all that life would bring. And wow...

Tuesday has been an even slower news day, if that's possible. Ellis tolerated this new heart med at the introductory dosage, so they increased it this morning.

Yep.

That's it.

No lab work, no echo, nothing.

Just waiting for the med to work its magic.

And resting up for tomorrow.

First thing in the morning - ECHO to look at his heart function (and look for improvement!).

Then no matter what that shows, we're moving ahead with a semi-permanent central line - a PICC, we think. 12 noon Ellis is scheduled for the O.R. with a cardiac anesthesiologist for some extra expertise in the sleepy-sleep area and the intubation/ventilator experience.

Pretty much if the ECHO tomorrow looks better, then we need Milrinone till the new heart comes. If the ECHO doesn't look better (or the BNP test, which they'll do in the OR so he doesn't have to have another "poke") - then we'll probably need some more meds or...well, we'll deal with that if we have to. Whatever it shows, the docs and nurses will need the access, so we're moving ahead with the plan.

The good news about this extra medical support: it moves us to the top of the transplant waiting list - status 1A. He's began his wait status 2 - at home and stable - moved up a few months ago to status 1B - at home but failing to thrive - and now we're as high as we're going to go. Any moment it could still happen, and we would be pretty darn handily already here!

Thanks to all for your emails, messages, food/parking money, prayers. We are so incredibly humbled by your generous spirits and continued care.

Ellis continues to be having a good time! He got a basketball hoop today and has been playing all afternoon. Even 2 balls at once he can put through that hoop, one in each hand. We also got a handy-dandy floor mat so we can play on the floor with him like we do at home.

Tomorrow will be a hectic day of testing and waiting (of course!) for results, as well as the scary O.R. trip. Pretty minor procedure in the whole scheme of things, but always a bit tricky with a weakened heart.

We'll update as soon as we're in recovery mode!

Love,
Melissa, Sam, and Ellis

Monday, June 19, 2006 5:46 PM CDT

SCREEEEEEECCCCHHHHHHHH!!!!!!

That is the sound of Ellis, Sam, and I entering this nebulous netherworld of HOSPITAL TIME...

Time moves SO slowly and it seems like hurry up and wait for what we're never quite sure...wait and see...wait and see...

So today was nothing like we had thought it would be. When we first arrived at the hospital and they gave Ellis a preliminary examination, he looked fantastic! His O2 sats were in the 80s! We haven't seen 80s for a long long time.

Obviously then, everything on the agenda got put on hold while we re-evaluated him to make sure that last week's tests weren't just an anomaly or a bad day and there was even talk of sending us home tonight and chalking this whole thing up to a moody toddler. Why I let myself get my hopes up, I don't know.

So we did a chest xray, another echo, and some labs - with a repeat of the BNP test - just to see how he was today, to see if he matched his effervescent chatty personality and rosy pink complexion.

Nope.

He didn't match. In fact his labs looked WORSE than last week. What the heck?!? We went from almost 3,000 to 3,800 on that darn BNP test - not the right direction at all.

The ECHO didn't look too great either, no big changes, just the same not-so-great picture.

[sigh]

So we're obviously not going home, but that was a nice thought, wasn't it? Nope, we started a peripheral i.v. (the normal kind in your arm) and we're about to start a new drug to help his heart - Milrinone. We'll track the numbers while he's on this new drug and see if that helps him improve or not.

If it does help his heart function (i.e., the BNP number drops), then we can move to a more permanent i.v. and talk about ongoing dosage, etc. If it doesn't help his heart function, well, surgery might be in his future to loosen those pulmonary artery bands. That's what the docs are looking at and talking about today, anyway. Not much good news, but not really much news at all, yet.

Tick tick tick tick tick tick

Is it tomorrow yet?

Meanwhile Ellis is actually pretty darn chipper! He's reading books and practicing his alphabet and charming the pants off the medical staff. He recovered quickly from his i.v. and lab draw - especially when he got a STICKER! He has a new love for stickers and we put them on his 3-ring binder that I carry all his medical information in. Somehow this makes the owies ok. Works for me! Dried his tears right up.

More updates tomorrow when we see if this milrinone stuff is working. Till then...

Melissa, Sam, and Ellis

Saturday, June 17, 2006 5:11 AM CDT

Hello, all...

It looks like we're about to start a new chapter in this adventure.

Ellis had his cardiology check-up on Wednesday and things didn't look so great. The ECHO took a look at his right ventricle - the one doing all the work (the left one with all the damage is way beyond recoverable, just a tiny little ball of scar tissue now).

Well, this trooper of a right ventricle that has supported Ellis these last 2 years is getting pretty tired. It's a lot of work pumping blood to the lungs and the entire body, I suppose. Especially in a growing and walking and talking and dancing and potty training little boy.

So...

Ellis and his heart need a bit more support than we can manage with oral medications at home. The only kind of medications we can turn to now are ones given through a central line, an i.v. that has a direct route to the heart. His heart is pretty stressed out and has been getting more and more stressed out this spring - remember my melancholy entry a few weeks back? This is the medical version: his lowered stamina, his increased blue-ness - all due to slowly worsening heart function.

To put it in context, there's a hormone they can test called BNP. It is released in your blood stream when your heart is feeling a bit cranky (post heart attack, for example!). A few weeks after his open heart surgery at 1 month old, Ellis blew the doctors away (in a bad way) by being at 1,700 when "normal" is under 300.

Well the BNP test from this week is sitting at about 3,000.

Yikes.

So...

We're heading in to the hospital on Monday morning, 10 a.m. We will be admitted to the pediatric intensive care unit where Ellis will be examined and then pretty quickly sedated and brought to the OR for a placement of a semi-permanent i.v. (for those of you well-versed in this stuff they're looking at a PICC line or a Hicman or something similar). Once the line is placed they can start some new medicines to help his heart. We will remain in the ICU until they get the levels of these medicines at their optimum for his heart function to improve (hopefully). Ellis will need to be on these medicines until his new heart comes, and possibly some i.v. meds for a few months after transplant as well.

If all goes well with the line placement and med levels, we might visit the catheterization lab to check those darn pulmonary pressures again. They have a sneaky way of becoming a problem when your heart is getting tired.

IF all goes well with that, we would hopefully be hanging out on the general pediatric ward within the week or so, and there for ...?

We might be able to come home with the i.v. and a med pump after a few weeks.

We might have to be in the hospital until the heart comes, depending on his stability and oxygen levels and heart function - waiting in the hospital.

So...

Sam and I are so sad and scared for Ellis. We will do our very best to make the hospital as secure and warm and happy and joy-filled as we can, but past stays have seen our E-man lose a bit of that feisty light. He has always been pretty darn talented at withdrawing when he needs to, just sleeping a lot or cuddling or closing his eyes when they're doing another test or another exam...we'll just have to try to make the in-between times ok.

Sam and I are relieved for Ellis, that he is in such good hands at the University. We have seen his health slowly decline over the last few months and are thankful that Ellis has so many doctors and nurses to take care of him during these valleys. He needs to be in the hospital now and that's where we will be, too.

Sam and I are so thankful for Ellis - for these last TWO YEARS of amazing stability. For TWO YEARS of cuddling, laughing, fart noises, animal sounds, elmo, zoo trips, walking, reading books, singing songs, kisses and hugs. Who would have ever dreamed of such a heaven on earth?

So...

We will be updating as often as we can these next days. This weekend we are trying to LIVE IT UP. We're going to squeeze in all the quality time we can these couple of days - keeping an eye on him very closely. He seems even more fragile now that we know actual lab numbers, but he's just blessedly plowing along - he doesn't care about any darn labs!

On a side note - a huge THANK YOU and HUG to our family at New Life Lutheran in Bolingbrook, IL, where Auntie Sarah is the pastor. Thank you for being such a wonderful part of her life and ours. We are so thrilled that her and Adam and cousin Grace are moving here this summer - what a wonderful thing that will be. We know you will miss her, but it's a small Lutheran world, after all!

Love to all of you and a happy, happy, happy Father's Day to Sam. You are the best dad in the whole world and I am so proud to be your wife.

Melissa, Sam, and Ellis

Tuesday, June 6, 2006 11:31 PM CDT

Hello, all!

Summer is definitely here and the Bergstroms are living it up! Ok, well, Ellis and I are, Sam is almost there.

Sam is away this week with the marching band, and E-man and I are holding down the fort here (and having a BLAST by the way, but don't tell Sam - we don't want him to feel left out!).

Anyway, since I'm home 95f the time these days, we've gotten into a lovely routine of fun fun fun. We're back in the big swing of things down at Gillette, where we've restarted OT with Marno (working on our fine motor skills, grasping, finger strengthening, self-care/dressing, etc) and Speech with Dana (eating and talking). Talking isn't necessarily that much behind, we're just pushing him to do more two-word combinations besides, "Yo mama". Seriously. I'm not kidding. He says that several times a day when plain ol' mama won't get my attention. It's HYSTERICAL! He also says "I dunno" and "I stuck" (in his walker)...oh and he's added the word "cool" to his thumbs-up trick. Ummm...did I also mention that he's learning the alphabet? And his numbers 1-5 are totally solid. Yeah the alphabet thing is pretty scary. He knows several letters by sight (A, B, C, D, E, L, M, O, S) as well as can name different words that they start (apple, ball, cookie, dog, ELMO, lala, mama, snake, you get the idea).

We used to get some pretty serious laps going in the local malls and the outdoor arbor lakes mall in his walker, but now he stops and has to "read" all the signs that are at his eye level - that is, point out all the letters and name the words that go with them. It takes us FOREVER to get anywhere now! But I've gotta encourage the genius thing, it's just too amazing.

I think I've mentioned before that this kid is obsessed with stop signs. Strange but true. He yells at me from the backseat when we approach every one - "MA!" - and then puts his hand out in good ol' "Stop in the name of love" fashion. A secondary obsession then comes in the form of the yellow school bus, which does have a stop sign actually attached. Can it get any better?!?

And yes, we have begun the potty conversation in our house. I know he'll never forgive me for posting the above picture, but it sums up a lot of what we're talking about these days. We have several helpful books with lots of pictures and we are just practicing right now and convincing him that everyone's doing it. If you see us at the mall, feel free to chime in!

And the above picture also shows off his summer hair-do. Seriously the "composer hair" (as our music students like to call it) is getting a bit out of control. Crazy kid.

More pics to come soon - we're going to be starting Physical Therapy in a POOL in a few weeks, and we are EXCITED! So we'll have some shots from that experience, and we see our cardiologist next week as well as an eye doctor the week after that, so we'll have some more news soon.

Till then - see you at the parades with the Marching Knights and their fearless director, Mr. B!

Love,
Melissa, Sam, and Ellis

Sunday, May 14, 2006 2:27 PM CDT

Hi, all.

Well - the Bergstroms are feeling a bit sheepish that it has taken us this long to get a new update. But look at all the new technology we've learned about! Don't forget to click the link below for MORE videos of Ellis and his favorite animal noises and favorite hobby: swinging!

Top 5 Reasons it took us 2 months to write a new update:

5) BUSY! Ok, that's not a very good excuse, but it is the truth. We've been movin' and groovin' this spring with Ellis' 2nd birthday (complete with a homemade red heart-shaped cake), cousin Grace's 1st birthday, uncle Josh's 20-something birthday (ahem), Easter eggs, concerts, recitals, marching band rehearsals and fun trips to the zoo, a museum, the park and PHEW - it's been busy. Mostly good busy, but you do get to that point where it feels a bit frantic. Luckily things are slowing down now, college is out for me so I can be home full-time with E-man. We'll just get Sam through the next few weeks of end-of-the-year-craziness and we'll all have some great summer fun.

4) THERAPY! So, yeah, actually this is REALLY not a good excuse, because Ellis has been on a break from all his therapies at Gillette to see how much he can keep up on his own. We're gonna check in with all of them in the next few weeks and see what kind of progress he's made. We still see Melanie and Nicole from the school district, and things are going well all around.

3) SICKLY! It's been a bumpy spring, unfortunately. With our hospital stay in March (rotavirus- ick!), Ellis has never quite gotten back on top of everything. We're back to tube feeding him every night (he does about 1/3 of his calories during the day eating and drinking, then we tube feed him the other 2/3 of his daily calories). He caught back up with his weight loss, thank goodness, he was starting to get a little too skinny for our taste. He's had a nasty wet cough for about 3 weeks now, grew into a really nasty double ear infection, and the poor kid is finally feeling a bit better. The really bummer part is that all these illnesses have taken a whack at his overall stamina. You can really see it when he's walking. He gets out of breath and tired and wants to get carried now more than ever. Then he gets frustrated at himself and tries to walk again, and the cycle repeats. I think that's why we're tube-feeding again, too. He just can't drink or eat enough in one sitting without getting too tired. But his mental agility and attitude and perseverance is AMAZING...so we trust that the future will bring renewed strength.

2) SAD. To be totally honest, I've been avoiding this website for a while. No offense to any of you WONDERFUL Ellis fans, but this spring has brought some very mixed emotions for both Sam and I. We've found ourselves breaking the ground rule of sanity: don't look too far behind or too far ahead, just concentrate on today.

Well, we met all those wonderful families at the heart walk and we found ourselves looking, imagining, dreaming, worrying, fearing, hoping.

We celebrated his 2nd birthday and we found ourselves remembering his birth day, his 1st birthday, and wondering about his 3rd, 4th, 5th...???

We watched and waited and prayed with other "heart" families that we have come to know as one lost their child, another experienced some unexpected emergency complications, another got a clean bill of health and signed off their site (hallelujah - normal life!) and we found ourselves wondering about what it all means, where's the sense in all of it, how it can be so tough for such little ones.

We have held Ellis tight these last weeks as his health and stability has gotten a bit more tenuous. Lower oxygen levels (mid 60s), more blue in his fingers and toes, more stares at the grocery store, more questions from strangers (why are his lips so purple?), more coughing, more stopping to catch his breath, more nightmares (for all of us), more trips to the E.R. and doctor's office for observation, and we saw the calendar pass ONE YEAR on the waiting list for this desperately needed new heart.

1) CELEBRATING! Yes, we are celebrating. Though it seems almost every thing he does, every song we sing, every dance move, every word he says makes my eyes tear up, we are still celebrating. Ellis is so chatty and thrilled to wake up each new day and play and swing and be with us and be with Ga-ga, Ga-ma, Gum-pa, Uncle A-a, Auntie Ha-dee, Baby (grace), and Auntie SSSS-ah.

He talks a mile a minute, combination of babbling, signing, and his incredibly expanding vocabulary. He laughs and squeals (see swinging video); shrugs his shoulders and says "I dunno" when you ask him a tough question; cues applause after every new trick and calls people by name if they're not enthusiastically involved in the clapping!; likes to "march" with Sam's summer band - he high-steps down the street after them in time with the drums; dances with all his might to any music anywhere; made me SO proud when he took a tortilla at Don Pablo's and put all his baby food inside and rolled it up to match mama; can scoot down the stairs on his belly all by himself!; can finally STEER that darn walker; loves to tickle our toes; enjoys talking on the phone and especially likes drumming, hugging and giving kisses...

So when we aren't writing, please know that it's because we are having too much fun being together!

But we have fun sharing it with you, too, so we'll be better - promise!

Love,
Sam, Melissa, and Ellis

Friday, March 17, 2006 6:56 PM CST

We're home!

We got discharged from the hospital late this afternoon and made the trek back to Maple Grove.

Ellis is holding his own at the moment. The docs made it very clear to us that he had to keep drinking liquids or we'd end up back in the hospital. He's pretty run down, very weak, and still has the diarrhea that set in yesterday, but no vomiting for the last 24 hours.

But we're home.

He was diagnosed officially with rotavirus gastroenteritis - a nasty bug - which, unfortunately, now his cousin Grace has, too. She was visiting when this all got crazy and brought the joy home with her to Chicago. Most healthy kids (like Grace) do ok staying at home, but Sarah and Adam are watching her closely.

Aahhh, the joy of germ sharing among relatives!

At least this time Sam and I are in the clear so for, eh? (Yes, I am knocking on wood...I'm not going to tempt fate too much.)

We had wonderful care at the University - our wonderful wonderful Dr. Lohr cared for Ellis from his admit until yesterday afternoon, the other residents and fellows were great, too. The nurses were wonderful and we even got to hang a bit with our primary nurse from the ICU, Janice. It is fun to show off how big Ellis is and his tricks - especially his famous thumbs-up (see pic above), which he managed to find the energy for, even after IV insertions and lab draws and xrays and radiological dye studies - he's quite the sport.

Anyway, did I mention we're home? We're home...

Quiet weekend on the homefront, wishing the same for all of you...don't forget to check out the NEW photos of the heart walk AND AND AND the video link (see below) to a clip of HIS FIRST UNSUPPORTED STEPS!!!

Love,
Melissa, Sam, and Ellis

Wednesday, March 15, 2006 10:33 PM CST

Hi, all.

Unfortunately we're in the hospital and it's not for anything exciting.

Ellis started vomiting Tuesday afternoon and it increased as the night wore on. By 8 a.m. Wednesday we were at the clinic and ordered to go straight to the hospital where they had a room waiting and an iv with fluids ready to go.

They did get the IV on the first try!

He's feverish, miserable, sad, lethargic, and still vomiting. No specific cause or treatment yet, just waiting for blood/urine/throat cultures to turn up something and giving him fluids with sugar in his iv (he hasn't eaten anything since Monday that has stayed down).

Hopefully he'll perk up tomorrow and start being his bubbly self again soon. He has managed a few animal sounds and thumbs ups, but sleeps most of the time.

We'll update if anything develops, otherwise we'll probably be hanging out here for a few days until he starts eating and peeing and acting wild again.

Love,
Melissa, Sam, and Ellis

Saturday, February 25, 2006 8:13 PM CST

***UPDATE: CHECK OUT SUNDAY 2/26 PIONEER PRESS LOCAL SECTION FOR A LOVELY ARTICLE AND PICTURES ABOUT ELLIS AND HIS NEW HEART BUDDY!!!***

Wow!

We had such an amazing morning at the Mall of America at the 2006 HeartWalk, raising money for the American Heart Association.

We participated with the Pediatric Heart Transplant Team from the University of Minnesota - an AMAZING group of people - our surgeon, Dr. Herrington; our nurse coordinator, Paula; our social worker extraordinaire, Dot - all of whom we have been so honored to work with this far in our journey.

And, most amazing of all, we met TRANSPLANT SURVIVORS!!! Smiling, happy, walking, talking, fantastic kids walking around with brand new hearts! And just as amazing - smiling, happy, walking, talking, fantastic PARENTS of these kids!

I cannot even describe accurately how wonderful and relieving and reassuring and hope-giving that was. We talked and talked and walked and walked and talked about our stories together, they told us about the light - the BRIGHT light - at the end of this really scary dark tunnel. One brave boy - proudly in 2nd grade - had PERFECT attendance for the entire school year last year, only 3 years post-transplant! That's not normal, that's FABULOUSLY HEALTHY!!!

Hopefully we'll have lots of more pictures to share soon - a photographer from the hospital promised some email shots to all of us families - including a full-team photo.

Also, keep your eyes peeled for a possible story and photos in the Pioneer Press. We made a wonderful connection with the Corbo family and their son Jack who got his heart in October of 2004. They were connected with the paper and together Jack and Ellis make quite the story of hope and yet the continued NEED for awareness of organ donation.

THANK YOU THANK YOU THANK YOU to all who supported us in this latest adventure! We understand that the University gets a large part of its funding for pediatric heart research from this annual event and we were SO proud to be a part of their team.

We'll keep you posted if there's any more coverage or photos, otherwise we'll have a new update in a few weeks.

Love,
Melissa, Sam, and Ellis

Monday, February 6, 2006 5:35 PM CST

Life is fantastic here in the Grove...

Ellis is eating like a champ - his new loves are macaroni and cheese, ice cream, donuts with lots of sprinkles, and diced peaches.

Ellis is walking like a champ! Check out that photo album - we've got a new walker and he can't sit still! He is CRUISING in that thing, especially on wood floors!

Ellis is talking like a champ! New words include "bus" and "go" and "D'oh!" (As in, hey Ellis what does Homer Simpson say? - great party trick for Sam!)

Ellis is waiting like a champ! We're slowly weaning off some medications while we're hanging out on the list: reflux med is gone (no more tube feedings at night helped that along), one diuretic is gone, another one is less, some potassium supplement is gone for now, too. Cool, huh?

February is the month of hearts and such, so us "heart families" are trying to raise awareness and money for research into congenital heart defects (CHD). Check out websites such as www.tchin.org for more information if you'd like.

Ellis, Sam, and I are participating in the American Heart Association's Heart Walk on Saturday, February 25th with a team from the University's Pediatric Heart Transplant Program. Check out our walk website if you'd like to donate to the cause! Ellis will actually walk!!! And of course we'll have pictures right here!

www.heartwalk.kintera.org/twincities/ellis

Happy CHD Day to one and all!

Melissa, Sam, and Ellis

Sunday, January 22, 2006 11:44 AM CST

The stomach flu has passed. It is finished.

(Big collective sigh)

Ok - now on with the good stuff! And BOY do I mean good stuff. You know all that stuff about silver linings and close a door but open a window? As usual, Ellis has taken life's lemons and made fantabulous lemonade.

Since the oh-so-cheery vomit-mobile has left our home,
ELLIS HAS BEEN EATING ON HIS OWN.

(pause to let that sink in)

(pause to wipe tears that still appear in my eye whenever I think how far we have come)

(ok, I'm ready...)

NO MORE FEEDING PUMP MACHINES,
NO MORE TUBES,
NO MORE ORAL AVERSION.

Ellis drinks all the formula we put in front of him (more than when we were actually tube feeding him) PLUS applesauce, pudding, diced veggies, crackers, cookies, meat, fruits, yogurt, cereal - you name it, he ate it.

Sam and I love to hang out with this kid, though we are actually just hanging on for the incredible ride and smiling in wonder. Ellis has the most determination and optimism and perseverence and humor and just plain guts of anyone we've ever known. He's amazing.

So if that weren't enough, we've been discharged from Occupational Therapy because he's currently testing at age level for fine motor skills. Yee-haw!

Physical Therapy (gross motor skills) are slowly but surely coming along. This is definitely our weakest area, but we're making progress. Ellis saw a new kind of doctor last week - physical medicine. We talked about Ellis' brain injury and the resulting hypotonia, or low muscle tone. This is a type of cerebral palsy, a startling set of words to hear when describing your son, but an apt classificaton nonetheless. Cerebral Palsy (CP) covers a broad range of brain/muscle disorders ("neuromuscular" if you want to impress your friends) and will affect him throughout his life, but the severity and symptoms vary from person to person.

So...as usual, predictions and prognostications do us no good. Not that Ellis has ever followed any previously! We're just going to support him with therapy and assist devices as much as we can through these formative years and see where we end up. He'll be fitted for some braces that will support his knees and ankles while he's learning to walk, and we will continue to use the "gait trainer" or fancy schmancy walker thing. We'll also continue intensive physical therapy appointments through the school district and through Gillette Children's Hospitals (a most wonderful place with compassionate, sensitive, enthusastic and loving people in every area).

Now if only Sam and I would get on an exercise regimen like Ellis! Ha! He ain't gonna get any genetic help in this area either - I don't think I've ever been able to do a chin-up or have any physical prowess whatsoever. Oh, well. Sam did have an athletically involved childhood and adolescence (he scored a goal in the state hockey tournament!), but since then he would just prefer to work on his guitar chops. The family that plays (music!) together, stays together, right?!?

Other news in the Bergstrom world...hmmm...we're doing all kinds of home improvement projects to get our house ready for a post-transplant kid. Sam, Grandpa Ron, Great-Uncle RJ, cousin Danny, and Auntie Heidi have been working on a new room (used to be a deck) with lots of windows for Ellis to play in and get his fill of sunshine even when its too cold or too hot. We're also moving quickly towards putting in some laminate wood flooring thoughout much of the house, replacing carpeting that is too hard to keep clean enough for an immuno-suppressed little boy crawling around. Grandma Mary Gaye is in charge of the artistic integrity of all these changes, as she is the visually gifted one of the bunch. I not only have no skills or patience for this stuff, I also don't even cook very well, so my role is to hang with Ellis and buy food for the crew! (They turned down my offer of singing while they saw!) :)

Anyhoo, we're back in the swing of the school year. Ellis sees his cardiologist this week for a check-up, I'm sure she'll be excited to hear about all his progress. We'll let you all know how he's doing!

Thanks for checking in! Hope you are all well!

Love,
Melissa, Sam, and Ellis

Thursday, January 5, 2006 10:29 PM CST

Ok, so 2006 got off to a bad start for the Bergstroms...here's a recap for those of you who like all the gory details (and I do mean gory - hope you're not eating)!

Monday 1/2
2:00 a.m.-9:00 a.m. Sam awakens at 2 with severe vomiting. Dreams about trying not to dream about food in between visits to the porcelain deity.

9:00 a.m.-12:00 p.m. Ellis wakes up and joins Sam in the vomiting trend. Looks like it ain't gonna be a good day.

12:30 a.m. Call the transplant coordinator to discuss the symptoms and she encourages us to come in and be seen at the University ER since our pediatricians office is closed.

1:00 p.m. Arrive at the ER and are immediately brought back to a room and seen by a doctor - star treatment for their star patient! Labs need to be drawn (2nd try gets the blood), chest xray taken, stomach xray to check for blockages, vomiting continues about every 20-30 minutes (ICK!).

3:00 p.m. Chest xray looks good, stomach xray looks fine, ears look fine, no fever, labs are a bit no good: high white blood cell count indicates an infection going strong and some skewed electrolytes means ADMISSION and an IV to start fluids.

4:00 p.m. 1st 3 attempts at placing an IV in his dry, tiny, already-abused veins all no good. Ellis does manage to express his horrified anger at this torture by vomiting on almost every nurse trying to work on him.

6:00 p.m. By the SEVENTH attempt we finally get an IV placed - in his scalp. The only good veins left, i guess. Poor kid. Seriously. I was very much contemplating running away with him after all this craziness, but he was still pretty darn sick and needed fluids in the worst way.

8:00 p.m. We're finally upstairs in our room on 5A and Sam, queasy, pale, and worn out comes to visit for a few hours before Ellis and I head to bed in the hospital chair/cot. Vomiting has stopped for everyone and things really seem to have turned around (or at least calmed down).

Tuesday 1/3
8:00 a.m. The "Lab people" come to visit to stick the poor kid again. I asked the 14-year-old who first came (yes I am officially an old woman now) if she was completely confident in her baby-sticking skills, because if she wasn't, she better get someone who was - I'm only giving them one shot. She went out and got a middle-aged woman with a Eastern European accent who got blood in one 10 second poke - no tourniquets, no hot packs, nothing. Fantastic! Ellis didn't even peep.

9:00 a.m. Sam came by with bagels and juice. He was feeling pretty weak and run down, but much better than the day before. So we were hopeful for Ellis, too.

11:00 a.m. Our wonderful cardiologist, Dr. Lohr, stopped by to visit after seeing our name on the admit list even though she wasn't "on the clock." It was very good to see a friendly face and catch her up on Ellis' situation.

4:00 p.m. The cardiology team stopped by to let us know they wanted to keep Ellis one more night just to make sure nothing grew on the blood, urine, and nasal cultures they took at the ER. His WBC count was back to normal and he was on some very heavy duty IV antibiotics, but just to be sure. And they wanted us to try tube feeding him again at the hospital and make sure that was all working, too. And see some more diapers - we all need good plumbing.

6:00 p.m. Ellis is his good ol' self - drinking some milk and munching on some saltine crackers. Watching Baby Einstein movies and reading books. Even wanted to walk a bit. Oh, yeah, peeing and pooping with the best of 'em.

10:00 p.m. Sam leaves again for the night and to go to work the next morning and expects to pick us up after school the next day. Ellis and I settle in for the night.

Wednesday 1/4
4:00 a.m. I'm wide awake, feeling strangely nervous in the stomach. Wondering if the M&Ms I ate before bed are not sitting well or if the sugar just has me hyped up.

6:00 a.m. Ellis wakes up very bright eyed and we put away the bedding and get ready to start our day.

6:15 a.m. Ellis vomits ALL OVER me, the rocking chair, the floor, the crib bedding, his pjs, his stuffed kitty cat. The nurses come to help me clean him up and order me some scrubs to wear the rest of the day (since OF COURSE I had sent home my only slightly dirty laundry with Sam the night before...grrr).

6:25 a.m. As I'm still hanging out in my puke clothes, I ask the nurse to take Ellis and I run to the bathroom and get sick. Yuck.

6:30 a.m. I call Sam and tell him what's going on and that might be a rougher day than we all expected.

6:45 a.m. I faint at Ellis' bedside and fall to the floor. The nurse is in the room at the moment and rushes to protect Ellis from falling out of the crib, then lifts me up and gets me a basin for next round.

7:15 a.m. Sam gets called again - HELP ME!

8:00 a.m. Sam arrives and I'm spending most of the morning in the bathroom. But of course I feel SO GOOD in between "sessions" that I don't want to go home and leave my baby. Especially since now he has developed a strange rash all over his torso and then his IV stopped working. I wasn't about to go anywhere - I'm the caretaker, darnit, not the one needing to be taken care of.

10:00 a.m. The IV has been pulled (and a haircut thrown in to get rid of all the tape). I settle in for a lovely chair nap.

11:00 a.m. I wake from my nap suddenly and rush to the bathroom where I almost immediately pass out onto the floor. I regain consciousness but cannot see anything besides a peephole of light, cannot move my body in any meaningful (or helpful way), and cannot speak clearly. Doctors and nurses rush when Sam calls for help and they get me down to the ER.

12:00 p.m. Sam and Ellis are holding down the fort in 5A and I'm down in the ER seeing the same nurse who failed at placing an IV in Ellis on Monday. He gets mine on the first try and they pump the fluids and anti-nausea medicine into me. I'm having a hard time answering questions - pretty confused, delirious, no muscle control. I hear the doctor call it "profound dehydration" and I thought that was very, well, profound as I stared at one ceiling tile for the next 4 hours trying not to vomit.

4:30 p.m. I've recovered my electrolytes and thus my brain cells and I'm discharged back up to 5A just in time to see a doctor who discharges Ellis! Yippee! Hospital time for the first time in history was actually covenient!

6:00 p.m. We're home. We crash. We sleep. We're happy.

That's the long version (though I did leave out the "other end of things" if you know what I mean - I have to have some pride left, ask Sam for details he seems to enjoy telling everyone!). Thanks for listening! Here's to a happier and healthier rest of the new year!

Love,
Melissa, Sam, and Ellis

Tuesday, January 3, 2006 2:50 PM CST

Happy New Year!!

Well, it hasn't started too happy for Ellis. He (along with his dad) got a nasty bug/stomach flu thing. After throwing up several times, Mom brought Ellis to the E.R. at the U just to be safe. After spending several hours in the E.R., the doctors decided to admit Ellis and have him spend the night. They did several tests (all of which have come back negative) and he has been feeling better since last night. We haven't heard the final word yet, but it sounds like they want to keep us one more night to be safe. They have also put Ellis on some antibiotics until they get some final tests back. Ellis has just been on I.V. fluids since last night, but he has been able keep water down. We plan on starting tube feeding (formula) soon and see how that stays down. I think the doctors want to see food staying down and regular diapers happening before they send us packing. We'll get back to you when we know more or get home. Thanks for checking in and we hope everyone had a happy new year.

Sam, Melissa, and Ellis

Tuesday, December 27, 2005 11:32 AM CST

Church, church, church...

oh, and did I mention, CRUD, CRUD, CRUD?!?

Yep, I'm afraid it's Ellis' annual cold. Sam and I had been hacking for a few weeks and amazed we hadn't passed it on any sooner, but it's official. Poor kid.

We actually brought him to the local urgent care yesterday morning as he was looking quite miserable and pale. THREE AND A HALF HOURS later we were seen by a doctor (who of course had never met Ellis) and after he ruled out an ear infection ("his ears look beautiful!") or pneumonia ("chest xray looks fantastic!"), he wanted us to be hospitalized for his low sats. Well, ummm, he ALWAYS has low sats. But we couldn't convince him to let us go home, so he called the pediatric cardiologist at the U who gave him the OK to send us home - FIVE AND A HALF HOURS after we arrived at the dang clinic (at which we were probably exposed to seven million viruses, sigh).

Other than the last couple of days, life has been fabuloso here in the Bergstrom house. December brought lots of concerts and church services to attend, and family visits from both sides. We are so happy to spend Christmas at home with our families! Ellis got lots of cool presents, as you might imagine: turtle-themed gifts, clothes, a new sled, books, jack-in-the-box, and lots more.

His therapy has continued to go well, too. He is eating much more consistently now - still chips and dip is the favorite, but the new contender is TOMATO SOUP. Or actually any kind of soup. So we've had a lot of soup. The bonus is it's really hard to feed soup to the dog, so Ellis has to do most of the eating. We've been working on giving him a sense of control during mealtimes, so he has a baby doll and a kitty cat that always eat with him and he gets to choose who gets the next bite or spoonful. "Whose turn is it, Ellis?" "Baby" (Mom gives baby a spoonful of soup) "Now whose turn is it, Ellis?" "Meow-meow" (Mom gives kitty cat soup) "And NOW whose turn is it?" "Me!" Amazing process, but it works.

Marno, his loyal OT at Gillette, is SO pleased with his work in fine motor skills, she might actually discharge him for a few months and see if he can keep up on his own! He's at age level in almost everything in her area. And she's getting married this weekend! CONGRATULATIONS to Marno (and enjoy that Canon in D)!

In PT, Ellis has been using a new contraption - a walker! He can cruise around all by himself rather than all of us walking him around holding his hands for balance and support. He cruises furniture with the best of 'em, but he can't quite walk on his own. So this is the next best thing.

In other news - Ellis (and I) would like to wish his DADA a Happy 31st Birthday TODAY! Best dad and best husband ever. We love you.

Thanks for checking in - hope you all had a good 2005 and we'll update more in the new year!

Melissa, Sam, and Ellis

Saturday, December 24, 2005 12:06 PM CST

Church, church, and more church - new message tomorrow when we can breathe again. But you have GOT to check out the photo of Ellis with Santa - it sums up the holiday season for many of us! :)

Till then - Merry Christmas to all and to all a good night!

Sunday, November 27, 2005 4:55 PM CST

Well, we had a happy thanksgiving at the Bergstrom's. We actually got brave enough to leave the metro area and ventured down to Austin for a few hours on Thanksgiving day. After seeing as many relatives as we could in a few hours, we headed back home to host the Wielands. Good food, good conversation, and lots to be thankful for.

Ellis is keeping busy now days with walking, talking, and more walking. He actually doesn't walk by himself, but he loves to grab a hold of our fingers and drag us around. His favorite times and places to walk are during the sermons at church, during the middle of a concert, and when we've just sat down to relax after a long day of walking. Ellis is also saying Adam (more like aa-aa) after his uncle Adam visited for the holiday. He is also saying beer (I think Grandma taught him this one). Ellis has also just began using the correct sign language for "all done" after months of using the sign for more to signal all done. Those therapists of his are slave drivers.

Ellis had a good time yeterday on his first sledding adventure. He went down the hill all by himself and loved it. He's hoping for more snow soon. I guess that's about all new around here. We hope everyone had a nice holiday. Thanks again for checking in with us.

Sam, Melissa and Ellis

Friday, November 18, 2005 12:34 PM CST

This journal is written with extremely mixed emotions. (Though I didn't think our emotions could get any more mixed up than they had been these last months.)

We received word today from the transplant team that a transplant with this donor's heart was no longer an option, due to its deterioration in function over the last two days.

So we are attempting to re-enter normalcy: unpacking the hospital bags, un-arranging subs, not staring at the phone...you get the idea.

There is definitely a sense of emptiness and grieving, some fear for the future, too. We were so scared when we thought we were heading into this new stage - not feeling very ready. Over the last day and a half we had convinced ourselves that this was the right time, and now we're convincing ourselves that it isn't the right time. But there WILL be a right time. There will be.

Thanks to all of you for being on this crazy ride with us. You make each exhausting loop bearable.

Love and Peace to all.

Melissa, Sam, and Ellis

Thursday, November 17, 2005 12:10 AM CST

UPDATE 5:30 p.m. Thursday: Just spoke with transplant team and they indicated it might not happen today or possibly even tomorrow. Our prayers are with the family of this child as they struggle with this loss. We'll keep the site posted if anything moves forward.

Hi, all.

We received a phone call last night at 9:30 p.m. from the transplant coordinator to alert us to the possibility of a heart becoming available for Ellis either sometime during the night or today.

They are still processing paperwork and medical testing with the donor and we're very aware that very often last minute complications can cancel the procedure. Our most recent update from the team, though, was very confident that Ellis will be receiving his gift of life today.

Please pray for Ellis, for us, his surgeon, his medical team, and please please please pray for the family who has made this possible in the midst of unimaginable grief.

We are waiting very anxiously at home for the next call from the transplant team and will attempt to keep you updated throughout the day.

With hope,
Melissa, Sam, and Ellis

Tuesday, November 8, 2005 9:41 PM CST

Is it November already? Phew...

We had a WONDERFUL Halloween. Ellis was an adorably white fluffy kitty cat to match his favorite companion these last few weeks.

The guy who used to be called "Mad Dog" is now obsessed with kitties. He has woken us up in the wee hours of the morning, "Mama! Mama!" I jump out of bed and peer over the edge of his bed and he's laying there smiling with his toy cat and says, "Meow, mama, meow-meow!" And then he'll roll over and go back to sleep - sweet dreams...

So we went to a few friendly places and saw a few friendly faces - he performed the trick (MEOW!) and Sam and I got the treats (CHOCOLATE!!!). Everybody's happy!

Other tricks up the little guy's sleeve:
-EATING! We've actually gotten a few bites in here or there (and not just chips 'n' salsa!). Green beans, bananas - slow and steady progress.

-TALKING! Mama, Dada, Baby, Ball (bah), Bottle (baba), Nuk (nuh), More (muh), Sarah (the proud Auntie!), Up (puh), Grandma (bleh).

-WALKING! Well not quite on his own, but if we stabilize his hips and he has his little walker toy he's cruising. And now wants to be walking ALL the time. Preferred position to hang out in is standing upright to walk or hang out at the coffee table.

-PLAYING! We finally got the hang of stacking blocks and rings, puzzles, pincer grasp, you name it he's loving it. Oh yeah, drums, too. Several jam sessions a day on the set and possibly drumming on the dog or the furniture or anything in his path.

We had some major appointments at the U yesterday (Monday, Nov. 7th): Chest Xray, Labs (ICK!), EKG, and ECHO and then we saw the wonderful people on the transplant team. There was some concern that the left artery that goes from the heart to the lungs was not visible on the ECHO. So off we went down to NUCLEAR MEDICINE for a lung profusion scan. Just to make sure that those darn PA bands weren't too tight (the ones that were designed to last a few months and have now kept us happy and relatively healthy for a year and a half!) and that his lungs were both getting the oxygen they needed. After the torture of placing an IV in his little tiny baby veins, they got out this crazy capsule with all the biohazard warning signs on it, drew up some liquid and injected it into Ellis's IV. "Any allergic reactions or side effects I should look for?" I asked the technician. "Nope, he'll just be radioactive today, that's all," he cavalierly replied.

[What the...? Seriously this kid has been where no man has gone before and back again in his first couple of years.]

Then Sam asked [of course], "Will he glow in the dark?"

Nope - no glowing, no strange vibrating diapers, nothing but good news from the lung scan - both lungs are getting about equal amounts of O2 which means those bands are doing just what they should and nothing extra. Yippee!

Basically a clean bill of health for the time being and we keep waiting waiting waiting for the big bang. Someday soon...

Till then (or in a couple of weeks),

Melissa, Sam, and Ellis "Radioactive Boy"

Saturday, October 8, 2005 1:55 PM CDT

"It takes a village..."

That is our autumnal theme here at the Bergstrom's. Sam is back at St. Michael-Albertville High School (and in full swing - pep band, musical rehearsals, the whole enchilada!). Melissa is back teaching FULL-TIME at Anoka- Ramsey Community College and LOVING every minute of it, but wishing there were more minutes in every hour of every day to get everything done! ACK!

Meanwhile, back at the pad, Ellis has been spending quality and quantity time with Grandma Mary Gaye who stays with us Sunday nights through Wednesday afternoons. They have been enjoying arts 'n' crafts time and lots of laughter.

On Thursdays and Fridays, Ellis splits his time between several people: Grandma Kay who treks up here from South Dakota; Becky and her son Asa hang out some Thursdays; and June and her daughter Fiona on some Fridays. He's definitely getting out a bit more these days and slowly but surely getting comfortable with that. There are others, too, that have helped out in a pinch at the highschool or the college or the church.

How 'bout a round of applause and a big huge THANK YOU to all our "village people"!

Ellis just had another cardiology checkup and everything looks status quo for now. He had an ear infection a few weeks back that got kind of scary for a few days (lower O2 levels, wet cough, generally miserable), but a couple of doses of antibiotics and he was back on the drumset.

We're still waiting by the phone, of course, while we go ahead and live the normal day-to-day whirlwind of activities. We love getting your messages on the website and will try to be better at keeping you updated!

Love to you all,
Melissa, Sam, and Ellis

Wednesday, September 7, 2005 4:22 PM CDT

Top 10 Funny Ellis Quirks

10. As of today, the ONLY food Ellis will eat is - I kid you not - CHIPS AND SALSA! It doesn't matter the chip, but he'll dip it into the salsa himself and take little sparrow bites, suck off the salsa, and spit out the chip remains onto his chin. Guacamole seems to work for him, too. Yummmm...

9. We're sure to get a laugh if we very sternly say, "No." Not just a chuckle either, hysterical giggling. This bodes well for future disciplining, don't you think? Other hysterically funny things involve being startled (boo!) or splashed.

8. Joyful noise: the high-pitched screech when he's very excited (usually when dad comes home!), the "happy dance" can accompany this as well (both arms rhythmically waving up and down in a kind of hip-hop yet Alleluia!esque style.) Other happy dance/screech moments of pure joy: standing in the rain with arms outstretched and face to the sky and riding in his wagon feeling the wind in his hair.

7. Speaking of music - we've already mentioned his dancing skills, but his signature dance move looks suspiciously like conducting. Hmmm...at concerts, to his Mozart toys, to the cell phone ringtones, to mom's piano playing. I guess he'll get a baton for xmas this year!

6. If I ever let him date (ha!), Ellis will definitely be hooking up with a waitress who wears glasses. He is very attracted to both and will manipulate anyone in an apron or anyone with specs to get up close and personal. So, watch out ladies!

5. Ellis' current beverage of choice is water. In a bottle. No, not a baby bottle, but a 22 oz plastic bottle of Aquafina. By sticking his tongue into the bottle opening he can control the flow and does amazingly well. He will drink from a sippy cup or a baby bottle if he must (and he can do it all by himself finally!), but he would much rather have the real deal.

4. Peekaboo. As I type this he has taken off his sock and placed it on top of his eyes and is flailing around laughing and playing his version of peekaboo all by himself. Anything will do: diapers (eeew!), kleenex, stuffed animals - you name it, he's hidden under it.

3. A couple of OCD tendencies are starting to appear (thanks, Grandpa George!): the need to tear kleenex and napkins into teeny tiny itsy bitsy bits. And a strange fascination with sorting flash cards. Take them from this pile, move them to that pile. Take them from that pile, move them to...you get the idea.

2. Ellis is starting to use sign language! He has been able to wave bye-bye, give kisses, and hugs for a while. Now we're adding a few more gestures to his repertoire of communication, like the sign for "book" he's getting pretty good at. However, he seems to be making up his own signs for some words. For example, in the outside world the sign for "more" is usually fists together in front of your chest. In Ellisville, that means "all done." I don't know how he learned the OPPOSITE of what it is supposed to mean, but that's the way he's doing it. For "more", then, he nods his head and clicks his teeth together. Sure. Ok. We'll go with it. He has a new one - pointing one finger to his opposite palm. Not sure what that means yet!

1. Mama. Dada. Baby. A three word vocabulary that melts our heart every stinking time. Everyone under the age of 15 is a baby, by the way, and dogs, too. He can pant like a dog on cue ("What does the doggy say?) and can pick out puzzle pieces of a cow, dog, bird, kitty, but we're still working on those words. He also has this amazing ability to blabber on in what are quite complex sentences. Badee bama bleebada deebadee babada. And in the car seat with his mirror, these sentences sometimes are strung together in quick succession (with random shouting for punctuation), then a brief pause, then a two or three word "punchline." Then hysterical laughter. He's his own stand-up comic and we find his jokes pretty funny, too.

Love to you all! Thanks for checking in...

Melissa, Sam, and Ellis

Tuesday, August 16, 2005 2:06 PM CDT

Hello everyone!

As you can see by our pictures, Ellis had his first trip to the Minnesota Zoo last week. We had sooooo much fun!

He screeched and giggled and yelled at all the animals, with particular enthusiasm for the birds, fish, and pigs. We tried our darnedest to remain germ free at the "family farm petting zoo" by not touching anything or anyone, but a cow nailed us all with a huge sneeze and we each got our fair share of germicidal wipes after that. We also had a close encounter with a tiger who ran right up to the plexiglass in front of Ellis who got to look right into the tigers' eyes. Pretty cool.

We had a big day at the University yesterday, lots of testing and doctors to make sure Ellis is still doing ok. We started with a chest x-ray at 8 a.m. which Ellis thought was a bit scary, but he was brave being strapped down under that big machine (as long as mom had on her lead gown and was right next to him). Then we had labs, with not one not two but three darn sticks in three different veins in three different limbs. My heart breaks remembering it even the next day. Then an EKG which is just stickers and being still, but he was so upset from labs that it was quite the production. Luckily all the staff at the U were very patient and so kind, he eventually calmed down and then actually slept throughout the entire ECHO (phew!).

Finally we got to see some of our old friends, the pediatric heart transplant nurse coordinator (how's that for a job title?!?) and the transplant cardiologist.

Basically things are fine with Ellis. His heart function seems to be holding strong, although his lower oxygen levels are causing his hemoglobin to rise (sort of a thickening of the blood - one of the reasons it was hard to get enough at the lab). This is mostly because of those oh-so-tight pulmonary artery bands keeping the high pressures in his heart from flooding his lungs. Hopefully those bands will hold out until the new heart comes. It's just something that we'll have to keep watching, with labs every month or two and close eyes on his o2 levels. They were designed to last only a few months originally, but he's gotten a good 16 months out of 'em so far!

Which brings us to the second concern with Ellis, his size. While he looks quite "filled out" (especially those cheeks), he is still quite small for his age, below the 3rd percentile for weight. The last few months he hasn't budged at all, and that's why we switched around his feeding 2 weeks ago. Since then he's put on a pound, but has COMPLETELY stopped all bottling, letting the feeding pump do all the work. So...

So...there's good and bad about all that. Because he is smaller and slow to grow, those PA bands have lasted this long. AND because he's very small and has decided to stop eating (hopefully temporarily) - he can be upgraded from Status 2 (home and doing ok) to Status 1B (home but not really ok) on the transplant waiting list! (Status 1A is in the hospital on IV meds and/or a ventilator and we've all agreed we're not doing that.) So, the transplant cardiologist said that Ellis sure knows what he's doing - growing at just the right pace and then taking a feeding break so he can move along on the list! "Slow and steady..."

Long story short, nothing is really new: the transplant still could come any day (like today!) or it still could be many months. Sam and I heard a different prediction from everyone, and of course no one can know. But we do know that he is the only one of his weight, age, and blood type on the list in MN, ND, SD, MI, WI, and IL. And that there are only a handful of other children waiting ahead of him when you look at the whole country.

Thanks for checking in...school starts next week for me and the week after that for Sam. Grandma Mary Gaye, Grandma Kay, and friends Becky and June are going to be having some quality time with Ellis so I can go back to teaching while we wait. We are so lucky to have such supportive family and friends in our lives. It might be a bit chaotic around here the next few weeks, so be patient for our next update! We'll most definitely post something if the heart should come, otherwise watch for a list of top ten cutest Ellis tricks come early September!

Love,
Melissa, Sam, and Ellis

Monday, August 8, 2005 3:49 PM CDT

Hello, friends and family!

We are cruising through the summer and having a blast!

Ellis has been continuing in speech, occupational, and physical therapies - which has been the majority of our structure these last few weeks. He's making slow and steady progress in all of them.

In speech, he has actually allowed up to THREE bites of pudding into his mouth in a single session. We're going to be completely changing his feeding regimen around over the next two weeks so we'll see. Right now he gets most of his food overnight and bottles a bit during the day with almost no solids. We're going to switch him to 5 "meals" during the day and nothing over night. So he'll get a chance to bottle and then we'll tube feed him whatever he doesn't eat by himself. It will be some cranky times while we make the switch, but hopefully it will normalize his eating routine a bit so we can stimulate hunger and get this kid eating like his chubby mom! I'm doing the best I can to set a good example (someone has to finish the pudding)!

In OT we're working on that darn pincer grasp and other fine motor skills. Everything seems to be keeping up pretty well. In PT we're still working on weight bearing on both arms and legs. He can actually remain on his hands and knees completely self-supporting for almost a minute now! This is huge for him. He can pull himself up on furniture (SCARY!) and stand holding onto things pretty well, but can't quite walk yet. We're getting there.

Sam was up in St. Cloud last week coaching the rhythm section for the All-State Band so Ellis and I joined him for the last couple of days and heard some incredible music. Ellis has also been to a few Godspell rehearsals (I've been doing the musical direction for the Plymouth Community Theater cast), so with those and visits to all our church families he's got his fill of music this last month. Actually, he never gets his fill, he LOVES music. Any kind, any quality, any genre. Even the printer printing out a word document is enough rhythm to get him dancing. Way cute.

Big appointments at the U with the transplant team on Monday, Aug. 15th. He'll have an ECHO, an EKG, a chest xray, labs (ick!), and see the docs. We'll get an update on his list status and also his heart function, and let you know what's happening.

Till then (unless the call comes before)!

Melissa, Sam, and Ellis

Saturday, July 16, 2005 3:26 PM CDT

One year ago today...

ELLIS HAD (FINALLY) LEFT THE BUILDING!

Today is the one YEAR anniversary of Ellis getting to come home from the hospital for the first time in his 3 1/2 months of life.

From home hospice care to HALLELUJAHS in one whirlwind of a year. We still have a long way to go, but are so amazed at our son and his miraculous life thus far and so eternally grateful for each and every moment.

Even these moments:

***Major constipation episode this week! Ellis tried out prune juice (not a big fan, as you might imagine) and Sam and I found ourselves very uncool-ly talking about poop a majority of the day - texture, timing, volume, color - sorry to all of our friends and family who were forced to discuss the issue! everything seems to be coming out ok now. ;)

***Our daily feeding battle (aka lunch) has now been expanded to include our golden retriever, Dakota. Ellis has discovered that if any crackers, spoons, or sticky fingers are held over the side of the high chair, a very eager puppy will nibble or lick the food till it's "ALL GONE". Of course, this is the funniest thing since dad's belch - so while Ellis' intake of solids has not improved much, Dakota is eating like royalty.

***There are some toddler-type behaviors that are emerging in this little guy: squirm, squirm, squirm to get out of our arms/laps/stroller to go go go! He definitely wants to be cruising around on his on, though his only mode of self-transport now is rolling. We finally had that moment of "WHERE'S ELLIS?" the other night when I came back into the family room with a basket of laundry and he wasn't with his toys on the blanket where I had left him. He had somehow managed to roll across our long family room floor, take a sharp 90 degree turn and tuck himself behind the big brown chair. "He's Rollin', Rollin', Rollin', Yeah our baby's rollin', Wonder where he's goin' - Rawhide!"

And ESPECIALLY these moments:

***Now says "Mama" AND "Dada". And even "Baby" once or twice to himself in the mirror. At church the other evening, I was playing the piano for the liturgy. Sam stood up in the pews with Ellis for the gospel reading, Ellis saw me from across the sanctuary and said "MAMA! MAMA! MAMA!" I'll say Amen to that.

***Ellis now must be the one to turn the pages in books, and open and close the cupboards. We all have to do our part!

***Fourth of July fireworks with a wide-eyed Ellis soaking it all in.

***Ellis usually ends up sleeping the last few hours of the morning tucked between Sam and I. We wake up to sweet soft "mama"s and "dada"s - and if that isn't quite enough, he'll proceed to grabbing our noses and some gentle swats - and if that still doesn't work, then he'll break out the kisses and tongue clicks and lip buzzing to charm us out of our slumber. Best alarm clock in the world.

Love to you all who have traveled with us this year,
We have never had so much hope!

Melissa, Sam, and Ellis

Monday, June 27, 2005 11:59 AM CDT

Highlights from a month in the life of Ellis Bergstrom:

June 3rd
Attended St. Michael-Albertville Highschool Graduation to hear Dad's band play Pomp and Circumstance and celebrate that now DAD gets to hang out EVERY DAY!!! Woo-hoo!

June 4th
Met Lydia Laine Nau, new baby of Wendy and Dylan, our good friends. She actually makes Ellis look like quite a strapping young man!

June 5th
TRIATHALON in Buffalo where a crazy team of Sam's fellow teachers "Tri"ed for Ellis. They even had team t-shirts for them and us and a onesy for Ellis that said "It's All About Me!" Swimming, Biking, and Running - phew - we were tired just watching! Roger, Jox, Kristy, Angie, and Kevin - a HUGE HUGE THANK YOU to all of them and to all who gave so generously.

June 8th
Cardiology checkup with Dr. Lohr. Ellis charmed all the nurses and Kim the echo lady with his tricks. He puts on a little show now for everyone he meets, he can do all the following with just a verbal request - kisses, tongue clicks, so big, touch head, touch chest, hugs, says mama when I ask him my name (MY FAVORITE!!!), grab dad's nose, high fives, peek-a-boo - it's quite the spectacle. (Oh, yeah, health-wise he's doing great, so no big news!)

June 11th
Ellis and I attended a concert of the Great Northern Union Men's Chorus thanks to our friend Don - and we saw one of our favorite nurses ever - STEVE!!! He sings in the group and we were able to catch him after the concert and show off. What a treat!

June 12th
Our first parade! We attended the Albertville parade and realized very quickly that Ellis is NOT a big fan of the fire truck/ambulance/police sirens. Wow. But the marching band was a big hit! Sam's not able to direct them this year since we have to be so "on call", but they look good and sounded great.

June 19th
Father's Day! We had a grand ol' time - Ellis got Sam a bike trailer so we can explore some more trails around here as one big happy family.

It was also Grandpa Ron's birthday so we celebrated with cake and ice cream (see picture).

Cousin Grace was baptized in Chicago and we were so sad not to be able to go. But we sent along some recorded music (even Ellis got a couple of syllables to sing) for the occasion. The Wielands came to Minneapolis after church and we got to watch the video of the church service and hang out.

June 20th
Ellis' first OT appointment at home, working on eating skills. He has not been too keen on solid foods since the bottling came to be cool (since Christmas). He'll taste anything, just PLEASE not from a baby spoon, and GOD FORBID it actually go in his mouth and he might have to move it around and NO SAY IT AIN'T SO swallow or something. We've worked our way up to a couple of bites at a time now, though it's not quite enjoyable yet. SLOW AND STEADY, yaddah yaddah yaddah.

Oh, yeah, it was our 7th wedding anniversary, too. O Happy Day!

June 24th
Welcomed our friend Jan to the neighborhood and Ellis got a big kick out of her ceiling fan and her little dog Spike. They shared a couple of licks and neither liked the other's taste too much. Ick.

June 25th
BIRTHDAY PARTY! Ellis finally got to meet Logan and Owen Bushaw. They are the 2-year-old twin boys of Sam's cousin Ben and his wife Natalie (see picture). They all live in a bee-yoo-tee-ful house in Eagan and we introduced them to Ellis as well as got to meet some of their relatives and catch up with some of our own. Ellis was pretty impressed by the boys' walking, stair-climbing, and WAY cool kiddie pool. Owen and Logan each had their own health challenges when they were born, too. Logan in fact shares with Ellis a cardiologist and heart surgeon! Small and crazy world.

June 26th
ANOTHER PARTY! This time on my side of the family! We drove down to Burnsville to congratulate my cousin Mel's daughter Katie on her highschool graduation. But we couldn't figure out why no one was parked outside the house for the big party. Until we realized the party was actually the DAY BEFORE. D'oh! We sheepishly rang the doorbell with our card and they got a good laugh and invited us all in, broke out the leftovers, called up Cousin Bruce, Great-Aunt Julie, Cousin Amy and her daughters Lauren and Gillian, Kevin and Megan and we had our own party! So fun!

June 27th
This afternoon we see our pediatrician for Ellis' 15 month checkup (!), some vaccinations, and a weight check. Last time we had a shot, Ellis didn't even cry! Tough guy, must be a Bergstrom (though Sam complained a lot about his flu shot...hmmm...).

June 28th
Tomorrow we see Ginnie, who has been our Physical Therapist since last fall at Gillette. She has been a huge part of Ellis getting stronger and healthier and the best darn sit-and-reach-while-leaning-on-one-arm-for-support kid ever. She's having a baby soon, so she'll be busy with that for a while and we won't get to see her for a long time. Hopefully we'll have a new heart and be well down the recovery road when we see her next.

June 30th
OT appointment with Marno - hope she has the big blocks ready for Ellis "Godzilla" Bergstrom to knock down!

HOLY SCHMOLY it's been quite a month. We PROMISE PROMISE PROMISE it won't be another month before our next update, ok? Hopefully we'll have some big news to post soon. Plus we just have lots of pictures to share from the last month.

Love to you all!!!

Melissa, Sam, and Ellis

Tuesday, May 31, 2005 1:35 PM CDT

Hope everyone had a lovely Memorial Day!

We went to the local cemetary for a brief ceremony, Ellis didn't even flinch at the 21 gun salute, though Sam and I did attempt to plug his ears as he squirmed out of our grasp.

It was so gorgeous outside, and again today - we'll have to get lots of miles on the stroller this summer, for sure. We've found some beautiful drives to Auntie Heidi's new pad through the Elm Creek Park Reserve so Ellis can see the horses and trees and rivers and lakes. He hasn't noticed any of that yet, he's too busy talking to himself and sticking out his tongue at himself in the little mirror that hangs above his carseat - very entertaining for EVERYONE in the car.

Lots of fun-filled-family time this weekend with the Bergstroms and with the Bunges who brought Cousin Grace from Chicago. Grace kicked Ellis in the nose once, but he recovered quickly. Ellis meanwhile liked to take Grace's pacifier out of her mouth a gazillion times. Looks like they'll be good buddies.

There are some CRAZY cats up at St. Michael-Albertville High School (faculty and students) that are running/biking/swimming - yes - a triathalon team in honor of and celebration of and to benefit Ellis. They all compete this weekend and we'll be there to cheer them on, as well as marvel at their athletic bravery and stamina. (Especially Bovee!) Hopefully the good weather will hold on till then.

Summer is just around the corner, this is Sam's last week of classes and then he can come along on all of our therapy appointments. We see our pediatric cardiologist next week for a checkup and some labs, maybe an Echo, too. More Ellis photos and news then.

Love,
Melissa, Sam, and Ellis

Sunday, May 15, 2005 11:37 AM CDT

Oh-so-faithful friends and fans and family:

It has been too long since our last update. Somehow being on the list makes our day-to-day stuff seem less interesting than ever. It reminds us of when Sam and I were waiting for Ellis to be born. The bag is packed, something could happen at any moment of any given day (or night), but NOTHING keeps happening instead. Every time we call a family member you can hear the nervous anticipation in their voice when they answer, wondering if this is THE call, but, alas, we're just calling to chat. Sigh...

At least with Ellis' birth, the window of possibilities was a bit smaller. With this transplant, the timeframe is pretty wide open - could be today, could be next week, could be 6 months from now, could be longer! Of course, we're hoping for sooner rather than later. If we wait too long, they might have to do another "bridge" surgery to loosen his pulmonary artery bands that are pretty darn tight. His oxygen saturation levels (normal for you and I is high 90s/100have been slowly dropping over the last couple of months. Where he used to be mid/high 80s, sometimes in the 90s, he is now definitely sitting in the low to mid 70s. So he looks a little bit more blue, but otherwise seems to be doing great!

We met with the surgeon that performed Ellis's open heart operation last year. She will do the transplant as well. She talked us through what to expect when we get the phone call, when we get to the hospital, and all the logistical details that will need to fall perfectly into place to make this happen. It really is an amazing process. It's hard to not dwell on the sad side of the equation, but I guess the fact that good can come out of such a tragedy is the whole beauty of organ donation.

Meanwhile, we've just been hanging out. Ellis has been continuing with therapies, working hard and slowly improving in his strength. He can now actually hang out on his tummy and push up on his elbows, reach out and activate a toy, come back to elbows, and then rest. He can't quite sustain that weight-bearing, but baby steps of progress are ok with us. His legs are stronger, too - he scoots around the kitchen in his walker (backwards and sideways only) and loves to stand on our laps and dance (bounce) to music. He dances to almost any kind of music, even when our cell phones ring with little electronic songs he'll start bustin'-a-move. Pretty entertaining.

Ellis is starting to really be aware of routines and participating in little things like getting dressed. He'll hold up his legs, one by one, so I can put on his socks (which he then immediately pulls off so we can start over again!). He also helps push his arms through his shirt and helps pull it over his head. He also has been learning to assist with giving meds. We'll put a syringe in his G-tube and push the medicine in and then say, "Pull", he'll grab the syringe and pull it out and hand it to us so we can insert the next one. He can't get enough of peek-a-boo. Seriously. He's unstoppable. He'll use anything to hide - a diaper, a sock, a blanket, a newspaper - it's his favorite activity. In the musical genius area, we've realized that he can recognize when a song comes to an end, because he will politely applaud!

Speaking of music, The Sacred Voice is presenting a benefit concert for Caringbridge on May 22 (I sang with them before Ellis was born). This ensemble presents concerts for a wide variety of charitable organizations, and I'm so thankful they've chosen to raise awareness and money for this amazing service that has been such a huge part of our journey. Ellis and Sam and I will be there at 7:00 p.m. at Lake Nokomis Lutheran Church to hear the wonderful music and celebrate Caringbridge, so come join us if you can!

Wishing you joy and warmth this chilly month o' May.

Melissa, Sam, and Ellis

Tuesday, April 26, 2005 8:04 PM CDT

Well, it's official.

Ellis Joshua Bergstrom is on the waiting list for a new heart.

(Gulp)

We met with the transplant team yesterday and sorted out the last few details to proceed with listing him. A chest xray, some labs (one horrible poke in each limb - he did great for the first 2, but melted down - as did mom - for the last 2), and lots of instructions.

We learned a lot about the whole process of organ donation, an amazing field. So much new life can come from tragedy. And that was the overarching theme of the day it seemed, death and life and how intimately they are intertwined. It's hard to think about the death part of this equation, but it is a reminder of how precious each day is for ALL of us.

Ellis needs a heart from someone of a similar weight (probably 8-10 kg), blood type (O), and region (preferably MN, ND or SD). At this point he is the only child listed with those parameters in this tri-state area. He is listed as "status II", which means he is not on life support or in the hospital, just hanging out at home - and we'd like to keep it that way.

So the question on all of our minds is ... How long? And of course, that's the one question that is completely unanswerable. We are very jumpy every time the phone rings, since our pager doesn't come till tomorrow.

Having talked through what happens when the call does come, we've decided it is both something we are longing for and dreading. It seems like it will be the beginning of a very long road. The transplant team was very careful to explain to us that a new heart is not a "fix-all", rather it is trading one chronic medical condition for another. Post-op life will be pretty intense - most likely a month in the hospital at least, with the first year following pretty touchy all around - and the anti-rejection drug regimen sounds downright miserable, as well as leaving Ellis very vulnerable.

But the hope...of seeing Ellis walk and talk and go to school and ride a bike and play the piano and visit the beach and play with his cousin and sing with the sunday school kids and potty train and finger paint and... well, you get the idea. Makes all this seem less horrible.

Ellis in the meantime loves to DANCE DANCE DANCE to any and every music, CLAP CLAP CLAP every time he hears applause on tv or cds or at concerts, PLAY CATCH, practice his YELLING skills, and SCOOT around our kitchen in his walker.

We're just trying to keep up with him!

Melissa, Sam, and Ellis

Saturday, April 16, 2005 9:52 AM CDT

Hello!

Life is good in these United States. Stroller rides, trips to the park - the sunshine sure brings out the best in everyone.

We had our 12 month checkup at the pediatrician yesterday and everything looks good - we're actually on the growth charts! Well, not quite in weight yet, but in height he's at the 25th percentile and head size is 10th percentile and we'll just have to keep working on the pudge factor. Our neurologist from a few weeks back wrote in his report that Ellis was "over nourished." HA! We got a good laugh at that one. It's all about those glorious cheeks.

Ellis also is now a pro at going out to restaurants for dinner. He loves to sit in the highchairs and throw every thing on the table onto the floor, watch where it dropped, and then look up with a very proud smile. He also likes to munch on saltine crackers and drink apple juice out of the kiddie cups they provide. And if there's a balloon involved, so much the better! Although you know how much I love to cook (!), it looks like we'll just HAVE to go out because Ellis thinks it is so much fun.

Ok, ok, enough small talk.

You all know the University of Minnesota's cardiology conference was yesterday morning. Here is where the team puts their heads together on their toughest cases and hammers out a treatment plan. Well, Ellis was the topic of discussion and they reviewed his neuro assessments and the data from our recent visit to the catheterization lab...

They are going to list him for transplant.

Probably within the week.

Expected wait time for a new heart will be 3-4 months.

We're scared out of our minds.

We have never had so much hope.

Ok, I'm going to go hug Ellis for the three billionth time.

Love to you all.
Melissa, Sam, and Ellis

Thursday, April 7, 2005 4:42 PM CDT

We're home!!!

That's right - smooth sailing all morning long! Ellis is getting to be quite the pro at all this surgery stuff.

We did have general anesthesia, a breathing tube, multiple ivs, all for a very complete and 'agressive' diagnostic heart catheterization.

We carried Ellis to the double doors of the OR unit at about 7:30 this morning and then handed him over (wide awake) to the anesthesiologist. I thought Ellis - in his famous separation anxiety - would be very upset at this abrupt transition (and thus we would be, too). However, the lovely sleepy-time Doc had on a tropical printed scrub cap that Ellis was completely fascinated with and we watched them disappear behind the big double doors and Ellis was in this man's arms whom he had never met before just staring and trying very hard to grab his hat! He didn't even notice mom and dad getting futher away. So Sam and I actually laughed our way to the family waiting lounge instead of the usual tears and sense of dread. It was a good sign of things to come...

We heard from the surgeon and other cardiologists around 11 that they had actually finished! Partly because everything went as smoothly as could be, and partly because they just couldn't access the left pulmonary artery at all - too narrow. But here's the scoop: the pulmonary artery pressures that were in November upwards of about 30 (where ideal or normal would be 8ish and acceptable up to 15ish), are now.....(drum roll, please)...

ELEVEN!!!

That's right. Unofficially (the docs still need to confer, chat, discuss, debate, revisit all the measurements), Ellis Begstrom has transplantable pulmonary artery pressures!!!!!!!!!!!!!

And we owe it all to Viagra! Really! That's the key medicine that's been on board since November to "decrease vascular resistance" and is the driving force behind this extreme improvement in his status. And yes, we've heard all the jokes and yes, you can use this against him come prom-date and wedding toast.

So...the next step is definitely all the cardio docs putting their heads together, reviewing all this data from the cath and labs, and presenting him at the cardiology conference next Friday most likely to decide how to proceed. There was also some marked improvement in the left ventricle function as well, so some other surgical options might be back on the table as an alternative to or longer-term bridge to transplant (definitely not the most likely path, but who are we to say - we should learn to stop making predictions). However, there was also a realization that he is definitely growing up and growing out of the shunt and the two pulmonary bands that were placed last April and those interventions might need to be surgically tweaked sooner rather than later to allow him to wait safely for a heart. We'll just have to give the docs time to use their incredible knowledge, skill, and artistry (and instincts!) to decide what is next.

Right now Ellis is rolling around on the living room floor (who said to take it easy for a few days!?!) and yelling "Gagagaga" with his cutely deep hoarse post-ventilator voice. We're going to go out on the deck and play with bubbles in the sunshine.

Overall, what can we say? We are happy, awed, anxiously awaiting whatever is next, rejoicing, fearful, giddy, humbled by the mystery of it all, and SO PROUD of our son.

We love him so much it takes our very breath away.

Thanks for loving him, too.

Melissa, Sam, and Ellis

Wednesday, April 6, 2005 7:44 PM CDT

Hello!

It's Wednesday night and the Bergstrom pad is chilling, grilling, and packing our hospital bag.

We're heading in to the University about 6:00 a.m. tomorrow (Thursday) with an approximate start time for the heart catheterization of 8:00 a.m.

After our pre-op physical today with our cardiologist, we are realizing this is a bit more involved than our previous trips to the cath lab. Ellis will have general anesthesia and a breathing tube and probably multiple iv lines. He needs all the extra attention because of the particular importance of getting the best readings and the most findings and the fact that they're going to do some testing while they're in there.

As you all know, the major obstacle to our being listed for heart transplant is high pulmonary artery pressures, that is the arteries that flow from the lungs to the heart - one from the right lung and one from the left. In his bypass surgery at one month of age, they placed bands around both to control those pressures for the time being. Now those are very very tight due to his growing and it is difficult to get accurate readings. The catheter probe goes up through the femoral artery (groin) into the heart and has to be ever-so-gently guided through the bands to test the pressures on the other side of the bands - the true PA pressures. Phew...very touchy.

So we're hoping they will have been lowered over the last 6 months since our last cath in November, but if they are not (or not enough), the doctors are going to try and test his vascular reactivity while they are in there. So they will give him some pure oxygen and see if the PA pressures lower, and they will also try some Nitric Oxide and see if anything changes. Lots of doctors from different places have been putting their heads together to try and give him every chance in the world. And we have the best of the best at the University. The surgeon performing the catheter tomorrow is the same one that did the balloon procedure when Ellis was 2 days old, as well as all his diagnostic caths since. He's awesome and we are in good hands.

But, it will definitely be a LONG day. At least 4 hours, if not closer to 6 in the OR they're thinking. And then hopefully Ellis will come off the ventilator with no complications and we'll be on the general children's unit most likely overnight or so. Predictions never work with this kid, so we just go one hour at a time from now till we get back home.

Anyway, not sure if we'll be able to get much understanding of the results or long-term implications tomorrow, but we'll definitely do our best to at least let y'all know everything went smoothly from Ellis' perspective.

Thanks for keeping us in your thoughts and prayers as we return to the dreaded hospital and try to convince ourselves that all this crazy stuff is for the best.

Love,
Melissa, Sam, and Ellis

Thursday, March 31, 2005 3:52 PM CST

Greetings from Chicago!

That's right, Ellis couldn't wait to get here to see his NEW cousin, Grace Violet Bunge. Ellis can't keep his eyes off of her. He also likes to touch her head, but he does have to be reminded not to pet her like his dog Dakota.

Well, as you may have seen in the pictures, Ellis had a great 1st Birthday. He actually had more than one party and lots of awesome presents. He was loving all of the attention. Party at the therapy gym, party at his house, party at Great Grandpa/ma Thompson, party at Great Grandpa/ma Bergstrom, party at Grandma/pa Bergstroms, party with the Wieland/Bunges - each with their own cake! More pictures to come in the next couple of weeks from these celebrations.

Ellis also recently had a couple of neurology appointments. The first was a brief appointment with one of his neurologists, who was more than happy with Ellis' progress and felt that whatever neuro concerns there might be should definitely NOT stand in the way of transplant. The second appointment was a neuro-psych test. The last time Ellis had this test he was 6 months old. Back then everyone was pleased with his results, which suggested he was at a 3-4 month old level (not too shabby for spending the first 4 months in the hospital). This time Ellis showed even greater gains. On one test, he actually tested average for his age in 2 of the 5 categories and only slightly below average for 2 more. Another test he was evaluted as age appropriate in all levels except gross motor. This is the main category Ellis is still working the hardest on in therapy (crawling, standing, walking, etc). Ellis continues to wow everyone in his progress.

Next week (Thursday 4/7) Ellis has a diagnostic heart catheterization, which should tell us how those pulmonary artery pressures are doing. This will also show general function of the heart. After hearing all the great news from the neurology team, these high pressures seem to be the main (only?) obstactle to transplant now. We do feel fortunate to be at the University where they are known for having some advanced methods and procedures for dealing with this sensitive issue. We may not immediately know more about long term plans right after the cath, but they should be able to tell us what the pressures are. So, everyone hope for low, low pressures - ready, set, go!

Thanks again for all of the 1st birthday wishes.

Sam, Melissa, and Ellis

Friday, March 25, 2005 0:00 AM CST

Ok, everyone, on the count of three…
ONE…TWO…THHHHRRREEEEE:

Happy Birthday to you! Happy Birthday to you!
Happy Birthday to ELLIS!!! Happy Birthday to you!

AND MANY MORE!!!

Yes, Ellis’ over-functioning mother had to stay up and enter a journal at exactly midnight, the first possible moment when we can say we made it to this amazing day.

We have been having soooo much fun the last couple of weeks – photos in the album reflect our adventures. The jacuzzi shot is from when we went to visit Auntie Sarah and Uncle Adam in Chicago and their Baby-to-be (who is still “to-be” at the moment). We realized that this kid is ready for more than your regular bathtub, so the first chance we got…

We took him swimming at a local hotel with NO ONE else in sight at the pool area. He got his shark swimming trunks on over his diaper and he loved every stinking minute of it! Splashing, kicking, floating - and of course photos!

He's now a pro at the giving kisses trick. Man it charms the pants off of anyone within 10 miles. You just have to ask, "Ellis, will you give me a kiss?" And he licks his lips and puckers up and gives you a nice loud smack! So fun...

We had a couple of doctors appointments this week - endocrinology and neurology at the U of MN. Ellis has been on Synthroid for hypothroidism since approximately his surgery in April and we were just following up to see what the long-term plans should be. Nothing too exciting, except we sure learned a lot more about that very important gland and the hormone it produces. Kind of regulates everything in the body - temperature, heart rate, brain development in babies - lots of stuff that is very important. We're just going to test his own thyroid function and see how it is now, not having been traumatized recently, and see if we need to fine tune his dosage...no big news.

Neurology was a FUN appointment! This was the doctor that saw Ellis in the hospital and from the results of that MRI in May predicted a life of severe cerebral palsy and severe mental retardation (no walking, no talking). Well, at this appointment I don't think he stopped smiling once. He was so amazed/thrilled/awed by our little guy. Ellis' head size has now reached the "normal limits" on the growth chart, as has his weight. (18 1/2 lbs!!!) Ok, so it's the bottom of normal, but we're catching up quick! He was very pleased with his developments in motor skills and verbal skills (and looked forward to seeing that confirmed by our neuropsych testing next week). Needless to say, he is an advocate for pursuing transplant at the U of MN.

So with that bright sunshine-y spot on our week, we are thrilled to be able to celebrate Ellis' birthday. He's being spoiled like crazy by lots of people this week and we'll tell you more about our birthday adventures soon. Just wanted to let you know about our appointments thus far, and we'll write again after next week's stuff. And AGAIN after the next week (cath on 4/7).

Thanks for being with us the past year. You are part of what has brought healing and joy to Ellis. Happy Day to all of our friends and family.

Love,
Melissa, Sam, and THE ONE-YEAR-OLD ELLIS

Friday, March 11, 2005 7:37 PM CST

WOW, has it been a month since the last update?!?!?!?!?

Sorry about that folks...we've just been so busy having fun, I guess! Our cardiologist gave us her blessing on some weekend trips so we've been putting some miles on the silver minivan, oops, I mean "Multi-Purpose Vehicle."

President's Day weekend found us tooling down the road to good ol' Aberdeen, South Dakota, where the Wieland grandparents and Uncle Josh live. Ellis showed off all his new words: ba, ga, ma (my favorite!), and bla. He also got to meet his fans at Bethlehem Lutheran Church...he charmed them all!

The NEXT weekend I put Ellis in the van with Grandma Kay and the three of us cruised down to Chicago to see Auntie Sarah, Uncle Adam, and Ellis' cousin-to-be. We had many fun times including visting New Life Lutheran Church and the Ellis fan club there - Wow! If you haven't figured this out yet, Ellis is very popular in the church circuit. And we love our church families everywhere!!!

Then if that wasn't enough time on the road, we headed up to Duluth the next weekend to see Sam's highschool jazz band play in a festival there. Ellis got a full dose of jazz music and loved every minute of it. He even clapped on cue during the evening concert when everyone else did!

(Actually, he thinks all applause is for him. No matter what he's doing, whenever he hears applause he sits up tall and smiles big and claps along! Move over, Galileo, Ellis is the new center of the universe!)

New skills include: playing pat-a-cake & peek-a-boo, clapping, nodding yes, shaking his head no, wiggling/squirming to move around (no crawling yet), and he is now a seriously chatty kathy (Sam shushed him the other evening when we were trying to have a conversation and he was just yelling "BA BA BA GGGGGG BAM MAMA MAAAAAA BLEEHH BA BABBBBBPPPTTTT!" and then we both had a good laugh at the irony of that...who was it that said this child was not going to communicate?!? We can't get a word in edgewise!).

Medical News: as we mentioned last month, St. Louis agrees with the U of MN that the next step is another heart cath to check the pulmonary artery pressures. So...we are scheduled to do that on Friday, April 7th. Prior to that, Ellis will see the neurologist at the U (3/24) and the neuropsych team again (3/30)to get an update on his development. We'll also see an endocrinologist (3/24) to check on his thyroid function which has been abnormal since surgery (he's been on synthroid since we came home).

Transplant Status: St. Louis has really no concerns about neurology, but has significant reservations about those high PA pressures. "Untransplantable" at this point, they said. We're hoping that medicine we've been on since November will have lowered them to an acceptable range for transplantation and that's what we'll find out in the cath lab on April 7th. The U of MN is still being very conservative about his neurological status but I think that this new set of tests/evaluations the end of the month will be further proof of Ellis' miraculous progress and that the transplant team will finally be on board. It would be so great to continue this process at the U since we know the system, we LOVE the nurses and cardiology docs, and the transplant surgeon is very skilled at transplanting with high PA pressures! What luck! If the heart cath shows that those PA pressures haven't been lowered, there are other medical options to get us on the list, but nothing too fun. We'll deal with that if/when we have to. (Here's our coping mechanism in a nutshell: don't look too far behind, and definitely don't look too far ahead...just today, today, today.)

Gotta love limbo! Tunnel vision is a good thing sometimes.

Any-hoo...a BIG BIG BIG HAPPY BIRTHDAY WISH to Ellis' fellow warrior, Baby Jaden. A big one-year landmark that we parents of heart babies are amazed at reaching and thrilled beyond words to celebrate! Ellis is coming up on his as well, and we PROMISE to have another update to keep you posted on his doctor appointments around that time.

Till then...thanks for all your thoughts and prayers! Keep 'em coming!

Love,
Melissa, Sam, and Ellis

Saturday, February 12, 2005 7:18 PM CST

Dearest friends and family:

'Tis the month of valentine wishes, with the ever-present decor of HEARTS, HEARTS, HEARTS everywhere you turn. Appropriately enough, there is a growing movement to bring awareness of babies like Ellis who are, in a sense, born with a broken heart.

Congenital Heart Disease (CHD) is the official name of the numerous defects that can occur when the heart forms in utero, a very complicated process. Some defects are so innocent, you may not even know you have one! Or it may never affect your life. Some do not require any treatment until later in adulthood. And others (as we all know) are devastating... CHD is considered to be the MOST common birth defect, and is a leading cause of birth-defect related deaths worldwide.

As fellow fans of SuperEllis, you have been along for this crazy ride, but you may not realize the extent to which this affects families all around us. Most of the families we have met in our hospitalizations have "heart babies"...some are home and recovering from a wide variety of procedures and looking towards a fairly normal life...others, sadly, never got to go home.

We have another "heart baby" in the family, in fact: Sam's cousin Ben and his wife Natalie have two handsome boys, one of whom shares a pediatric cardiologist, a pediatric cardiothoracic surgeon, and a zipper scar with Ellis! Man, are they going to have a lot to talk about at family gatherings! (Ba, ba, ba...gggggpppbbttt, bababa!!!) He's doing great!!!

So, when you see all those perky hearts, think of Ellis and his cousin Logan and all the other beautiful heart babies...and hopehopehope for health, strength, and long life (as well as more research funding for prevention and treatment)!

Anyway, quick update on Ellis, the star of this show:

We saw our pediatric neurologist at Gillette Childrens last week and, boy oh boy, was she excited about his progress. She even showed us the MRI from May right next to the MRI from November and it was STUNNING the amount of new brain tissue growth that has occurred. We just stared at the images and then at Ellis, and then back at the screen, and marveled at the capacity for the human spirit and body to rejuvenate, recover, and restore itself. Amazing.

We also saw our pediatric cardiologist and she, too, is very pleased with his overall stability and health and color and heart function. She has talked with the transplant director in St. Louis, and they both agreed that the next step for Ellis was to proceed to a follow-up diagnostic heart catheterization procedure, hopefully within the next few weeks. This will be able to tell us about those darn pulmonary artery (PA) pressures that are definitely the first and foremost barrier to transplant at this point. We have been on additional medications since November's cath to try to correct them, so we'll just have to go in and see how they're doing. Basically, the whole neurological piece of the puzzle is a very distant second to these numbers, because a new heart could not withstand these high pressures. But fortunately for us, the Univ. of MN is at the forefront of developing ways to control them either temporarily or to operate with them and we will explore all our options with them when we get the results from the cath...and of course, we'll let you know when that procedure will be.

Overall, Ellis is doing fabulously from a developmental standpoint, getting stronger every day and working up new tricks to impress his therapists who so faithfully have worked with us over these last months. We are so thankful for their work (THANK YOU MARNO, GINNIE, AND MELANIE!!!).

Happy Valentine's Day!
Best wishes for healthy hearts and lots of love!

Melissa, Sam, and Ellis

Saturday, January 22, 2005 6:57 PM CST

La, la, la, la,
La, la, la, la,
Elmo's World...

That's right...we have an Elmo fan in this household (no, it isn't Sam). I think it's their common interest in goldfish, but whatever the attraction, that theme song is in my brain 24 hours a day, thank you very much! (And I hope it is in yours, now, too! - insert evil laugh here)

We are living the good life - here are some highlights:

~Sam has officially discovered Ellis' ticklish spot (under the chin!) and much giggling has resulted for all of us.

~Ellis is still eating like a champ - only being tube fed overnight to supplement, he's still on his own for daytime eating. In fact, he bottles at least 8, sometimes closer to 10 oz per day (more than we were tube feeding him!). Ironically, now he's decided that the bottle is actually preferable to any spoon-type-eating. Sigh... But the new secret is to sing, sing, sing like crazy while you're approaching with the spoon - he get's excited about the song and tries to chime in a bit and then you sneak in a bite of food and he chomps it down so he can hurry up and start singing again. Sing for your supper, I guess.

~We are no longer using home nursing. We really weren't in need of any of their services on any sort of regular basis since he's so stable and also because we do see a doctor of some kind fairly regularly to check weight, etc. We're getting a bit more normal every week...ok, Ellis is.

~More normalcy acheived...The large O2 tank in the dining room is GONE. We got over our superstitious selves and they hauled it away.

~Ellis attended a benefit/open-sing of Mozart's Requiem a few weeks back and took in this timeless work in all its glory. As some of you fellow music-nerds may know, Mozart died before he could finish writing this work, so there are parts that he wrote (up through the first bit of the Lacrymosa movement), and then the rest has been finished by a few different composers through the years. Anyway, our child is a musical GENIUS - because he was enthralled with the chorus, orchestra, and soloists up until that EXACT moment when Mozart had stopped and then suddenly became disenchanted with the whole affair, complained a bit, then fell asleep. Ha! Very refined taste for an Elmo fan, don't you think?

~Ellis will be 10 months old here in a few days and we are so amazed at his perseverence, his strength, his joyfulness, and his spirit...we think he's pretty cool, even in a Packers uniform.

Love,
Melissa, Sam, and Ellis

Friday, January 7, 2005 3:34 PM CST

Greetings and salutations in this new year to our beloved friends and family!!!

What a whirlwind of holidays we had around this place...I think we're still recovering! (The house sure hasn't yet!)

We had Sam's immediate family (Mary Gaye, Ron, and Heidi) around for Christmas Eve and Day...lots of presents and church and food! The the Wielands arrived (George, Kay, and Josh from South Dakota and Adam and Sarah from Chicago) just in time Sunday night for Sam's surprise 30th birthday party! We got to reconnect with some friends and family we hadn't got to see for a while and celebrate Sam's entry into AARP. Ok, not quite. Ha! We also had a surprise shower for my sister Sarah the next day (due in the spring with a baby girl!) and again got to have lots of food and fun with family and friends.

After all that revelry, Ellis got a bit of a cold. To be expected, I suppose, we probably all over-did it a bit, and especially him. He had a fever for 2 days, nasal congestion, and a nasty wet cough. Thank goodness for ibuprofen/tylenol. It got us through the miserableness and he was a very happy baby just a few days later. It was incredibly comforting to know that he could get a "normal baby" cold and be none the worse for wear. No hospital stay, no home nursing needed. Just another notch on his toughness belt.

Since then we've tried to be a bit less socially adventurous with him...spent some time playing with his new christmas toys and did some smaller outings like going to the Institute of Arts for some painting perusal on Dec 31. Ellis' new favorite sound is a loud smack of the lips, it's his version of a kiss, I think. Anyway, he practiced almost the entire time we were in the museum (which is a very quiet, echo-y kind of place). Renaissance paintings...Smack, smack, smack...Impressionist room...smack, smack, smack...Surrealists...smack, smack, smack. Puts all those masterworks in an odd perspective. Except for that outing, we spent the rest of New Years Eve at home, the three of us.

In the New Year we've already had some amazing steps forward...on Wednesday the 5th, we went to the U for a checkup with his Gastroenterology Doc to switch out the G-tube for a "Mickey Button" so Ellis wouldn't have a foot-long tube hanging out of him all the time. We were warned it might be a bit uncomfortable for him, but that it was quick and no sedation was necessary - just a quick switch in the clinic office. Well, it was not quick, and it was quite a bit more than uncomfortable!

The original tube had to be yanked out (and I mean pulled with all the doctor's strength) along with the anchor which is a round disc the size of a quarter or so, that got pulled through the tiny tube hole in his stomach/abdomen. It took him probably 45 seconds or so to get it completely out and needless to say, Ellis was SCREAAAAMMMIIINNNGGGG! Can you imagine? It was nauseating to watch and heartbreaking to try to comfort him. The re-insertion of the mickey button was a breeze, but by that time Ellis was so upset he couldn't be calmed down until it was all over and I could finally hold him again (oh yeah, and a dose of tylenol we requested from the nurses).

And unfortunately the Mickey Button, unlike the suggestive name, is neither small nor cute-as-a. It is actually a bit bigger than the original tube casing, but there just isn't a tube hanging out of him. But in order to give meds and food, we have to attach a tube. So, after all that. Oh, well. And the mickey button has to be replaced every couple of months, I guess.

So we are definitely now on a mission to get rid of that thing once and for all. And we're well on our way! Ellis has moved from "recreational bottling" to actual functional bottling! That's right, he is no longer on any tube feeds during the day! He went from maybe 10-15 ml (1/2 an oz) to about 6-8 oz a day in the last week!!!! And he eats enough solids to calorically stay on top of things. We are still tube feeding him overnight to supplement, but hopefully at this rapid rate of progress on his part we can be done with the tube soon! What a kid.

Upcoming stuff: continuing occupational and physical therapy appointments, neurologist checkup end of this month, echocardiogram and cardiologist checkup in early february, probably heart cath to check pressures in early march. We hope to hear what St. Louis has to say in the next few weeks and we will keep y'all posted.

Till then...

To remember all of what 2004 brought us,
we are overwhelmed.
To dream of what the new year will bring,
we are filled with hope.

To think of each of you,
To feel your spirits joined with ours
To pray, to sing, to weep, to celebrate,
we are eternally thankful.

May peace and joy and hope and love be a part of this new year in each of your lives!

Love,
Melissa, Sam, and Ellis

Saturday, December 25, 2004 8:45 PM CST

Ellis' first Christmas AND his 9-month birthday!!! O happy day!

We have had a fabulous holiday and hope that you all have, too. Fun and food with family, church, and some pretty cool presents for Ellis abound. He hasn't even complained once about having some birthday/xmas combination gifts (though his dad has, who turns THIRTY on Monday the 27th).

So many photos we need to share with you from these festive times, so hope you enjoy the first installment. Especially check out the NEW TEETH which we are celebrating (and commiserating!). They have definitely been a part of our holidays...poor kid.

Lots more family time and food and presents for Ellis to share, so we'll keep this short.

Thank you all for your love and hope and faith and peace and joy that you have brought us by being a part of our family...Merry Christmas.

Love,
Melissa, Sam, and Ellis

Sunday, December 12, 2004 9:28 PM CST

Hello!!!

Life with Ellis is...well, what can we say - it is awesome!

Here's the latest in his infant olympic acheivements:

1) Babbling.
He officially has 5 different consonant sounds in his vocabulary: g, b, d, l, and m. And holy schmoly this kid has a lot to say! Sometimes he just practices one sound over and over (especially guh guh with some bubbles of saliva), but sometimes he looks you in the eye and says very seriously, "Bih duh geg ble dih muh." With inflection indicating some serious observation about the meaning of life.

2) Laughing.
Ok, we've cracked the code on this comedy critic. He's been a tough sell on the giggling (except for Great-Uncle RJ's ducky voice and a belch or two from dad) till now, but he's opened up to our sense of humor. So the witticisms that meet his expectations are: helicopter sounds from mom with flying spoon of food, dad's impression of Lil John ("Wh-at? O-k!"), and of course bodily function sounds. Yep. He's his dad's son.

3) Oral Motor Skills.
So the babbling is fabulous, the laughing melts our heart like nothing else in this universe, and he has totally been much more open to drinking from a bottle these days. He doesn't take a lot, I call it "recreational bottling." Just for fun. A hobby. We could probably be more aggressive with switching him off the feeding tube and into independent eating skills, but our doctors are not quite ready to rock the boat around here - fluid balance and weight gain are always of high importance. Meanwhile, though, our speech therapist has DISCHARGED us because Ellis is at age level with verbal/oral motor skills and we are no longer in need of speech therapy. Woo-hoo!

4) Physical/Occupational Therapy
As you can see from the photo album, he is having much more trunk strength - sitting by himself at times, bearing some weight on his legs and arms for longer periods, pulling himself back upright after tipping, holding his legs in the air, etc, etc. In his recent occupational (fine motor skills) re-evaluation, he scored at a 9 month level in eye/hand coordination and a 6-month level for reaching and grasping skills. Pretty darn good in our book. We're continuing with therapy appointments 3x a week for now through the end of the year and then we'll see about cutting back a bit.

5) Cardiology
We are doing well with the new med, no blood pressure problems or anything so far. Our paperwork has hit some snafus in the red tape world on its way to St. Louis, so we probably won't hear anything before Christmas. More wait and see...we're gonna write a book on that some day. We're just fine tuning some meds as his weight increases and making sure we keep him as healthy as we can till we figure out the big picture stuff.

All in all, it's happy days here in Ellisville. We are continuing to take Ellis out and about (especially to hear live music) when we can and he is loving it. We're starting to decorate for Christmas and he's loving all the festive scurrying around the house, too. Look for some more santa-hat photos by the 25th, but till then...

Happy, Happy, Happy Holidays!

Melissa, Sam, and Ellis

Monday, November 29, 2004 4:39 PM CST

Hi, friends.

The last couple of weeks have been nothing but fun, fun, fun at chez Bergstrom...mostly normal baby stuff which is always a thrill for us.

Ellis has gotten out a bit the last couple of weeks, out to see the world in small doses under somewhat controlled circumstances. He went to Sam's high school and saw him direct the pit orchestra in a wonderful production of Seussical the Musical. We sat in the way back, hid during intermission, were the last ones to sit and the first ones to leave. Ellis loved the show. He watched the action most of the time, took a few catnaps, but overall was pretty impressed.

Last week we brought him to Thanksgiving Eve worship where I was playing the organ and Sam got to do the balance-a-kid-in-worship-while-holding-a-hymnal thing. Ellis was alert and attentive during the hymns and brass music and slept during the sermon...I think Sam might have caught a few z's too, but I can't be certain! They were sitting in the back there, too, and there weren't too many other kids around to worry about germs.

We are getting a little bit more brave with him, as he seems to be sturdier from an immune standpoint than we had first feared, but also because LIFE is happening all around us and we want him to LIVE it. So...there may be an Ellis sighting near you!

Grandpa George and Grandma Kay came for Thanksgiving from Aberdeen and Auntie Sarah and Uncle Adam from Chicago. Lots of food and bonding with Ellis ensued and much celebration and thanks was shared. Then we had another first in Ellis' life...

We left the cities!!! That's right! We got so brave we traveled with this kid all the way down to Austin, MN where Sam's parents and lots of relatives live. We stayed overnight (Ellis slept in a cradle made especially for him by Grandma Mary Gaye!) and while we packed the van full of medical supplies and oxygen tanks and all kinds of equipment, nothing went awry. Ellis just got to laugh at Homer the puppy, make faces with Grandpa Ron, and chat with Auntie Heidi. We also had the joy to visit both sets of Sam's grandparents and watch them hold Ellis and marvel at him while we marveled at them: Great-Grandpa Bud and Great-Grandma Enid, Great-Grandpa Norb and Great-Grandma Maggie.

Now we're back in the cities and getting back in the swing of therapy appointments. We have four this week, most of which are sort of reevaluating his overall skills to see where we should go from here.

The new medication he started a few weeks ago is going just fine, his blood pressure has not been negatively affected by it at this dosage. We're keeping a close eye on him as we continue to increase it.

(By the way, some of you have heard through the grapevine that this new drug is, in fact, Viagra. Yes. That's right. Get your snickering and poor-taste jokes out of the way now. Viagra was originally invented to lower pulmonary artery pressures and just happens to have some highly marketable side effects. Not that we've seen any, ok? So you can all tease Ellis mercilessly about this when he's an awkward teenager and maybe work it into a toast at his wedding. You have our blessing!)

Hope all is well with you and here's to food-filled holidays!

Melissa, Sam, and Ellis

Saturday, November 13, 2004 6:51 PM CST

Greetings and salutations from an almost tube-free boy.

Ellis' new feeding tube (you can see it in the photo album and our requisite naked-baby photo) is working fantabulously and whatever puking episodes he had before are now GONE - that stinky nasalgastric tube was probably always setting off his gag reflex and making the poor kid kinda sensitive. But no longer...the tube in his tummy is convenient, much safer, and plus he's even more photogenic (if that's possible).

The docs met again on Friday morning to discuss Ellis and the results from all the testing we underwent last week. They are concerned about 2 things at this point:
1) Neurology
2) High pulmonary artery pressures.

So...everyone is pleased as punch with his progress thus far, with the only caveat at this point being that his development might plateau. So the neurology team would like to see him again in 3-4 months and do another evaluation of his progress from now till then, so we can see a clear trajectory of forward progress.

The high PA pressures are actually the most critical concern now. The pulmonary artery brings oxygenated blood from the lungs to the heart so that it can be distributed to the rest of the body. Because Ellis' ventricles are both damaged and scarred, they can't quite loosen up enough in between pumps to let in enough fluid from the lungs. So the volume builds up in the lungs and creates these high pressures in the pulmonary arteries. Where ideal or normal pressure would be, say, around 8 - Ellis' pressures hover around 30. Yikes. This is why they put in those PA bands in his surgery in April to try to control that high flow. It is difficult if not impossible to transplant a new heart into that kind of situation because the new heart would be quickly overwhelmed by those pressures.

So...here's what we can do. There are some medicines available that have been shown to lower PA pressures temporarily that we can try. They're kinda touchy meds since they can also lower blood pressure everywhere else, too - not necessarily a good thing. We're going to start trying one of these on Monday going very slow on the dosage and checking in with the doctors couple times a week. Hopefully we'll be able to step up the dosage over the next month or so, and do another heart catheter procedure in January and re-check the pressures. If this med doesn't work, there are other meds we can try but they require constant hospitalization while you are on them, i.e., while we wait for a heart (weeks? months? years?) - NOT what we want to be doing, but we will if we have to.

Meanwhile, we're sending all of Ellis' records and information down to St. Louis for a second opinion on his transplant status. They do significantly more pediatric heart transplants there then here in Minnesota, and we've even heard the wait-time is much less, though I don't understand how that would be possible. We'll expect to hear something from them in mid-December about first of all, would they accept Ellis as a transplant patient, and if so, what steps would they feel we need to take in order to be listed. Yes, if they accept him and seem to have a better promise of hope for us, this might involve Ellis and I moving to St. Louis to prepare for transplant listing, wait for a heart, and recover from the transplant (weeks? months? years?), but Sam and I have come to whatever peace there is about all of these possibilities and we'll do whatever it takes to get Ellis the best care in the world.

At this point, we're continuing to push forward with the U's medical suggestions and continue to do intense therapies to keep him developing and flourishing. The rest of life decisions will wait till we have some more information. WAITING. We do a lot of that. But, thank GOD we have the luxury of time with this beautiful kid to do that. It's hard not to look too far ahead and imagine all the possibilities and worry about all the potential complications, but then we realize that Ellis isn't too worried about tomorrow. He reminds us about today: eating, sleeping, talking, playing, and cuddling. We've got a lot more of that to do, better get back to it!

Love,
Melissa, Sam, and Ellis

Sunday, November 7, 2004 9:28 PM CST

How sweet it is...

We finally arrived at the Bergstrom pad about 6:00 p.m. this fine Sunday evening and hoo-boy are we glad to be outta that there fine hospital. Besides the procedures, "pokes" for lab draws, nurses checking vital signs at 4 a.m., and all that jazz - just the sensory overload of people around all the time and roommate-babies with their own families and pain and tears and beeps of machines and people in and out constantly...well, let's just say it's good to be in a quiet, still, peace-filled house in Maple Grove.

Dakota (our golden retriever) is happy to have us back and has chosen to greet us with unusually smelly gas. Aaahhh, normalcy!

Ellis has been doing two things since our homecoming: smiling and sleeping. He's finally getting some uninterrupted napping in and when he does awaken to look around he's got a big smile. Oh, yeah, eating, too. He's back eating everything again and the feeding tube is working fabulously. We'll have to be really careful with it and his general abdominal area for about 3-4 weeks while the site heals - no immersion in the tub, unfortunately, but that time will go by fast, I'm sure.

We have planned a VERY quiet week. Just recovery time, good food, maybe sneak in a walk or two if it's not too cold, and lots of cuddling. Thanks for all your prayers and thoughts and emails this week...all went well and we are thankful.

Hopefully we'll hear from some doctors the next couple of days about the MRI results and we're pretty sure that Ellis will be discussed at the next cardiology conference (Friday a.m.) to review all of the data from our testing this past week and to try to determine the next best steps. We'll (of course) be very anxious to hear what they decide and we'll let you know as soon as we know.

Have a great week!

Melissa, Sam, and Ellis

Saturday, November 6, 2004 11:11 PM CST

Hi - quick update from Ellis island:

We did get the MRI done this morning and he got some yummy sleepy time medicine to help him stay still. He was wrapped up in warm blankets and just got a nice long nap. We haven't gotten to hear any results from it yet, since there is probably not very many people around on the weekend, we might not hear anything before we leave.

Yes, leave!

Looks like if all goes continues to go well, we're going to be discharged tomorrow!!! We've started to use his new feeding tube slowly today and so far it is working just fine. Tomorrow morning we'll go up on the speed/volume through the tube and make sure it's ready to go. Ellis was so incredibly excited to eat food the normal way (he hadn't eaten since 5 a.m. Friday), that he chowed down 4 ounces of applesauce and then drank 2 ounces from a bottle!!! And promptly spit it up all over me. Woops...

Since then, we've taken it a little bit slower and he's been fine. In fact, his food of choice today is PEACHES!

Anyway, all is well - he's still pretty sleepy from the MRI this morning so hopefully we'll have a quiet night and be on our merry way tomorrow afternoon or evening. We also got a treat today that we got assigned to some our favorite nurses from the ICU that happened to be working on the general floor today. Old friends!

Thanks for all your notes and thoughts - this week was so complication-free and we are thankful.

We'll write again tomorrow when we get outta here!!!

Melissa, Sam, and Ellis

Friday, November 5, 2004 7:30 PM CST

Happy Friday to all!

The tube is officially OFF his bee-yoo-tee-ful face and now in his chubby belly...yes, that's right, we did allow them to place a feeding tube in Ellis this morning.

However, it was very reassuring that all the docs were exactly on our same wavelength - that is, what is the least invasive and least risky way of doing this? So what that meant is that the originally scheduled surgeon came and greeted us in the pre-op area and said, "I just don't think he needs all the stuff we had originally had him scheduled for." Because of the study yesterday that showed zero reflux, we could skip one procedure altogether. Thus, the surgeon even passed Ellis on to a GI doc who did the whole thing without cutting him open. Basically they put a scope down his throat, shone a light when they got to his tummy that showed through his abdominal wall and poked the tube through. No slicing, no stitches, no blood loss, no large amounts of sedation, no major central arterial or venous lines needing to be placed. SLICK! The actual procedure took about 3 minutes (!), but from sleepy time to recovery room it was about an hour. Not bad. They did have to put a ventilator tube in for the few minutes while the scope was down his throat just to prevent any respiratory distress, but they took it out with no problemo and Ellis was never the wiser.

So...we got sent back up to the normal children's floor (no ICU as we were expecting!), and we've been hanging out with Ellis ever since. He's definitely not completely happy - a little sore from the new tube, and severely hungry. We had to stop feeding him this morning at 5 a.m. and they won't let us start again till tomorrow morning after his stomach wakes up again and everything looks ok. So we're giving him little sponges of water every couple of hours and he's getting iv fluids to keep him hydrated (a simple little peripheral iv in his foot is allowing him to get a few pain meds and preventative antibiotics, too).

He's napping right now so I thought I'd sneak down the hall and let y'all know he once again has whisked through a surgery with flying colors. If everything looks good over the next 24-48 hours in terms of handling food in his belly again, we might be able to go home Sunday evening. So we're trying to get his head MRI scheduled for tomorrow sometime and then we can bust outta here!!!

Another good day for Ellis when all is said and done. It will be nice to have his whole face to enjoy...the tube in his tummy can just be tucked into his clothes and in a few months will be replaced by a button that sits flush against the skin so you don't even notice it if he's not hooked up to his feeding pump. Cool.

That's the news from Lake Wo(e)-be-gon(e) - more tomorrow!

Love,
Melissa, Sam, and Ellis

Thursday, November 4, 2004 10:40 PM CST

Greetings!

We are HOME for the night and so thankful for a few hours away from the hospital.

Everything was pretty low-key today, as we only had 1 test on our agenda. Unfortunately we got a roommate this morning about 7:00 a.m. that was coughing pretty bad and was finally diagnosed with some sort of viral pneumonia. AAAAAAACCCKKK!!!! So Ellis and I spent the rest of the day hanging out everywhere BUT our room. On our list of things we don't need right now, viral pneumonia is getting near the top.

The Upper Gastro Intestinal study today was completely not what I was expecting. I pictured a dimly-lit room with a quietly humming x-ray machine, a little barium milkshake down the tube, a few clicks and we'd be on our merry way.

Ummm, dimly-lit room - check. Humming x-ray machine - check. Barium Milkshake - check. But I hadn't been warned about the middle ages torture segment. First, Ellis had to be strapped onto a board about the width of his shoulder blades and the length of his body. Of course, his startle reflex kicked in when he felt air underneath his flailing arms and the screaming began. Then they strapped him to the board around his knees, pelvis, chest and finally pulled his arms straight up and strapped them to the sides of his head. If that weren't the most vulnerable horrifying position in which to place a 7-month-old, then they put the ends of the board onto wheels so they could turn him 360 degrees like a bbq spit - back, side, upsidedown, and back again for 20 or 30 minutes. And if that were not enough, they also got to pull his NG feeding tube in and out of his nose in all those different positions so they could release the barium at different points in his GI tract. Ellis screamed, I cried, and the docs worked as fast as they could...

But it's over. Ellis melted into my arms as soon as I could undo the straps and grab him from that crazy machine. He recovered amazingly quickly and fell asleep before we even left the room to go back upstairs.

And the preliminary results are that his GI tract looks absolutely normal - NO reflux or any other issues that could complicate our surgery tomorrow. GOOD NEWS!!!

After we got back to our virus-infested room, the nurses worked as fast as they could to get us discharged and home for the night. A quick blood draw for pre-op labs, an EKG for good measure, and we got picked up in the minivan by Auntie Heidi. We did not linger one extra second for goodbyes - just hightailed it to the van and zoomed back home - where Ellis has been smiling and laughing and babbling ever since.

We also got to take a little field trip tonight to see Sam's band concert at St. Michael-Albertville High School. We arrived seconds before the downbeat, stayed up in the light booth and took a back exit so we could avoid as many germs as possible (we had been exposed enough in the darn hospital!). Ellis LOVED the concert - especially the jazz bands and anything with loud drums and cymbals, he was alert and watching intently the entire time. Band geek already, I guess.

So...we are expected back tomorrow morning to report to pre-op and prepare for this feeding tube placement. Sam and I are both harboring some pretty significant reservations about this whole procedure, especially since we haven't met the surgeon yet, not to mention a discussion with anyone about all the risks/benefits, sedation requirements, recovery time, etc. Yikes! We're going to get there early and let the nurses know we are not going to proceed with anything till we get every last piece of information we need. We're especially concerned that he will most likely need to be put back on the vent for the surgery and we've gotten many different estimates as to how long he would need to be intubated - from hours to days.

If we don't feel absolutely completely and totally comfortable, we are not going to have the surgery. We can cancel and reschedule for a later time if we want, or just delay it for a while till we figure out the big picture stuff. We'll decide tomorrow morning and let you know as soon as we can what's going on.

Thanks for all your messages this week and prayers and thoughts - it truly makes all these hard times easier to bear. Sweet dreams to all...we're headed to our own beds and we'll update tomorrow.

Love,
Melissa, Sam, and Ellis

Wednesday, November 3, 2004 6:31 PM CST

Greetings from the hospital!

Well, we're surviving back in the dreaded hospital. The nurses are so nice and cheery, it really isn't so bad here...it's just, well, you know, not home.

We were admitted this morning at 6:30 a.m. and had the wonderful surprise of one of our "consistent" nurses from our previous stay here to greet us on the floor when we arrived - that made us feel at ease and reminded us that we do, in fact, trust and admire these nurses and the fabulous work they do.

After a few hours of basic physical examination stuff, we were sent down to the catheterization lab at about 10:00 a.m. and Ellis was given some cute fuzzy hospital pjs to wear. He had some yummy medicine down his tube and was quickly snoring like a lumberjack in my arms. Then the scary part - when the nurse comes to take him from your arms and walks away with him and goes through the large double doors...tears were shed. Though this procedure is relatively routine, it is definitely not without risk. And that leap of faith you take is painful every time.

But all went well. By 1:00 we were finally out of the very tiny waiting room and walking back with Ellis up to our unit and he was awake enough to whine a bit about being hungry (couldn't eat since 2:00 a.m. to prepare for the procedure). We got some clear fluids going in his tummy and he promptly fell back asleep for most of the afternoon, awaking to drink a bit of water and eat some applesauce and then back to snoozing. I guess they had to re-dose him a few times with the sleep stuff because he kept waking up in the middle of the procedure! Crazy kid doesn't want to miss anything, I guess. Well, he's sleeping it off now (probably be up all night, too!).

Results from this test are pretty preliminary, but mostly not fabulous news. It looks like the one alternative surgery to a heart transplant that was still a distant possibility for Ellis has now been completely ruled out (for those of you who are familiar with heart surgeries, they were hoping for normal PA pressures to proceed with a Glenn). So while that is not unexpected, it is disappointing nonetheless. The surgeon was a bit vague as to his cardiac status for transplant and said they'll have to sit down as a cardiology team and discuss all the measurements before giving us any more details.

All in all, not as great news as yesterday - but we're definitely celebrating Ellis' complication-free recovery from this procedure and now looking ahead to the items yet to do. Schedule at this point (ALWAYS subject to MANY revisions):

THURSDAY - Upper GastroIntestinal Study to check for reflux and anatomical survey in preparation for

FRIDAY - Surgical placement of Feeding Tube with possible additional procedure to correct any reflux if necessary

SATURDAY/SUNDAY - hang out and recover

MONDAY - MRI of the head and spine

Phew.

So, it looks like we'll be here for a few days and we're seeing lots of doctors and nurses who are celebrating with us at Ellis' health and development and waiting with us for more news about the big picture. If you didn't get a chance to hear about our neurology update from yesterday, it's always available (with the rest of this whole darn saga) in "Journal History". We're still glowing from those results!

More tomorrow from "Days of Our Lives"...Thanks for all your prayers this week and always.

Melissa, Sam, and Ellis

Tuesday, November 2, 2004 8:35 PM CST

Hello!

Tuesday's appointments are done - and phew! - it was a long afternoon at the clinic.

We met with our cardiologist to review the plan for our hospitalization. She is such an amazing and supportive presence in our lives.

Then we went to the neuropsychology unit to undergo some testing of Ellis' development and skills. He was a bit cranky after being poked and prodded by the nurses for vital signs, but grudgingly participated for the doctors. After they crunched their numbers, they met with us to discuss the results.

Compared to other normal 7-month-olds Ellis tests on the low end of average. All of his skills are lining up consistently in the typical 4-month-old age level - which correlates exactly to his time outside of the hospital. No big surprise there. Not much developing of speech or gross motor or fine motor skills you can do while hooked up to a ventilator, dialysis, and numerous IVs - not to mention sedated most of that time.

Then we met with a neurologist for a clinical exam, one of the neurologists who gave us the initial prognosis of severe cerebral palsy and severe mental retardation. He used words and phases like: "amazed" "delighted" "proved me wrong" "made a liar out of me". Basically confirmed what we all know - Ellis is doing great. He said if he continues developing at this rate Ellis is right on track to walk, talk, read, go to school, play music, get a job, live independently, blah, blah, blah - all the stuff we take for granted in life. He's capable of it all!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

We're holding our breath a bit because everyone still wants to see the results of another head MRI (probably Thursday) - but at this point, the doc felt comfortable saying that he feels very optimistic about recommending that Ellis be a heart transplant candidate from a neuro standpoint.

We go in to the hospital Wednesday for what is now being called a "pre-op" workup. "Pre" meaning before and "Op" being the heart transplant presumably now a part of his future barring any unforseen developments this week. Ellis will undergo a heart catheterization (diagnostic) sometime in the morning, and then spend the rest of the day recovering. We'll let you know how he's doing tomorrow evening.

With cautious optimism (and MUCH MUCH JOY),

Melissa, Sam, and Ellis

Monday, November 1, 2004 5:46 PM CST

Hi, friends.

Ellis' first Halloween was tons o' fun. We dressed him up in several outfits throughout the day and had lots of trick-or-treaters who thought he was so adorable. Hope you enjoy the pics.

Auntie Heidi, Grandpa Ron, Grandma Mary Gaye, and Great-Uncle RJ were up for the celebration and worked on our house a bit, too. RJ has a very entertaining ducky voice that Ellis thought was hysterical and we all were enthralled to hear him just giggle away at this crazy relative!

This week will be one with lots of adventures...tomorrow will be some clinic appointments and testing with neuropsychology and neurology then Wednesday we get admitted to the hospital for all the tests they want to do.

I think we'll be giving daily updates throughout this week until we're safely back home again. We will probably update in the evening each day, but most likely won't have a chance to do new pictures for a few days at least.

Thanks for your continued prayers...it is always a leap of faith and trust to watch doctors and nurses and surgeons care for your baby, and this time seems so incredibly scary for Sam and I. We will be there with him every minute of every day and be advocating for his comfort and safety and health with each step. And we'll keep you informed as we check these procedures off our "to-do-list"...starting tomorrow!

Love,
Melissa, Sam, and Ellis

Monday, October 25, 2004 9:42 PM CDT

Hello, everyone!!!

Yes, we are official web-site-updating slackers. Our apologies...

Ellis is fat and fabulous - 13 lb, 2 oz - and eating the most nastiest looking baby food as if it actually tastes good!!! Spinach, peas, carrots, pears, applesauce, sweet potatoes, rice, oatmeal, mixed grain cereal - what a kid.

He's also been learning how to drink from a cup. Very tentative but mostly successful tries at taking a few drops and swallowing one or two (the rest dribble down the chin, of course, as well as half the cup that didn't ever make it in his mouth).

Other news in our world: Ellis was FINALLY approved for Medical Assistance. It is amazing that there are government programs out there to help families like us who have UNBELIEVABLE amounts of bills already - some copays, some "non-participatory provider" charges, some pharmacy stuff. He's well over the 1 million dollar mark that his insurance has already paid on his behalf, and the lifetime cap is definitely in our future. So it is with thankful and humble hearts that we accept this government assistance. Unfortunately, it took the system over 5 months to process our application (I guess there's been a lot of cutbacks in funding) and they said most families end up turning down the assistance because the parental fees have recently gone up so high (more funding cutbacks). We definitely need it so we'll pay the fees - his medical care will continue to be expensive - especially if we're looking at transplant at any point!

Speaking of, here's the latest on our plan...

Tuesday, November 2nd Ellis will be seen by the neurology and neuropsychology divisions at the University for a complete evaluation of his development. I tried to find out the questions on the exam so I could coach Ellis, but alas, not everything is available on the internet! Besides, he's pretty darn impressive with his improvements in strength, stamina, and skills. Lately he's even had a few seconds of putting weight on his arms in a "quasi-crawl" position. This from a kid who couldn't even lift his hand to play with a toy a few months ago.

Wednesday, November 3rd, then, we will be admitted to the hospital and Ellis will undergo a diagnostic heart catheterization that morning to assess the function the different parts of his heart and major vessels around the heart. He will also undergo a head MRI and a UGI (Upper GastroIntestinal) study to check for reflux. He'll recover from those studies for a few days and then he'll go into surgery so they can place a G-tube, a permanent feeding tube that goes directly through the abdomen into the stomach. He's eating a lot, but his stamina still doesn't allow him to take enough calories (and we're also looking ahead to his future, too - lots more meds and calorie needs).

So...Sam and I will swallow our fear and panic and dread and bring this smiley happy kid back to the hospital - willingly. Gulp. Our cardiologist has been so amazing in helping us feel better about this scary idea. She cares for Ellis so much and is making absolutely sure that all the best doctors will be involved in the procedures and is just basically looking out for him in every way.

To make ourselves feel better about bringing him back, we decided to do something FUN with Ellis. Knowing Ellis' new obsession with aquariums (he sees one in every doctor's waiting room and will watch the fishes for hours if we let him - we even have a fake one at home now)- the three of us went to UNDERWATER WORLD at the Mall of America. Wow - it was so fun! Ellis watched all the fish so intently and wasn't scared of the sharks at all...he even finally saw some live turtles, his mascot. Fun-filled-family outing!!! Hope you enjoy the pictures!

And Ellis has been excitedly babbling and we just KNOW he is talking about his new-cousin-to-be! That's right - Auntie Sarah and Uncle Adam are expecting their first child in the spring and Ellis will just be the best big cousin ever...

We'll update in a week, promise! We have to share our pics from Halloween of course...till then, eat your spinach!

Love,
Melissa, Sam, and Ellis

Monday, October 11, 2004 9:02 PM CDT

Greetings from Ellisville!

We had a busy last week with neurology and cardiology appointments.

Last Wednesday we met with our neurologist about Ellis' progress. It has been 2 months since we met with her as well as started the therapies (physical, occupational, and speech). All of our therapists gave reports to the neurologist, so she had that information in addition to her clinical exam. She was very pleased with Ellis' progress! In many ways Ellis is age level appropriate with any other 6-month-old child. She did express concern with his low muscle tone and lack of gross motor strength (both of which can be attributed to his 3 1/2 month hospital stay and/or his ongoing marginal heart function). It is impossible for anyone to predict Ellis' future capabilities, but this neurologist did acknowledge the fact that Ellis will probably have some learning problems/issues as well as some possible delays in walking or other mobility skills. But otherwise, she was very optimistic.

The next day we took Ellis to see his cardiologist, who was also very pleased with Ellis' progress. She told us she would present Ellis at the next cardiology conference (Friday, Oct 8) and gather everyone's opinions on how to proceed with Ellis in terms of getting on the transplant list.

We have since heard from her about that discussion - there seems to be mix of optimism as well as pessimism. Some of the doctors think his progress is very encouraging and merits moving forward with transplant plans while others think Ellis is still not a candidate because his neurological damage as presented on the original MRI was far too extensive (and may foretell more complications in any future surgeries). The compromise was to do some further testing to get every bit of information to help sort out the realities. So...

First, a neurologist from the University will evaluate Ellis in clinic for a second opinion on his development. Then we will most likely proceed with another MRI. While we are at the hospital, they also want to perform an upper gastrointestinal study, which will be followed by the surgical procedure of putting in a gastric feeding tube directly through his abdomen into his stomach (so we can get rid of that stupid tube that goes in his nose and yet we can make sure he gets all the calories he needs and his meds, too). Finally, the doctors will want to perform a diagnostic heart catheter to get a closer look at the heart, heart function, and pulmonary artery pressures.

Phew.

All of this will result in one to two weeks in the hospital and will most likely happen in the next several weeks. So, we will hopefully have some clarity after all that...we better after putting the little guy through more nasty stuff.

Some exciting news: Ellis is now 12 1/2 pounds. He also laughed for the first time last weekend. What set him off, you ask. Well, the very same thing that made him scream a couple of weeks ago, Dad belching in his face. Ellis now can share in this exciting new level of bodily function humor with his dad. So next time you are out and about, make a child happy, and burp in their face.

Thanks for all of your messages and we'll keep you posted on the upcoming tests and new information.

Sam, Melissa, and Ellis.

Tuesday, October 5, 2004 7:56 PM CDT

Hello and happy October!

Ellis is celebrating October by being brave and trying out some VERY orange carrot-goo. Yikes.

Things are just clicking along in our fall routine: therapy appointments, massage sessions, and doctor visits.

Therapy continues to go well - progressing like crazy. His new skills the last few days include rolling all the way from tummy to back unassisted, holding on and shaking toys to make noise, and moving toys with his feet (especially his rubber ducky in the tub). We have also been approved for therapy through our school district, in-home services for physical therapy at this point. That should be incredibly valuable, especially as we get into cold/flu season and don't want to be exposing Ellis to pediatric waiting rooms every other day!

We had our 6-month checkup with our pediatrician, got some more immunizations (all of which have gone very smoothly) - he just cries for a few seconds and hasn't had much soreness or anything, just a bit of a temp this last time. We're looking forward to getting a flu shot and a monthly (Oct-April) RSV shot (to prevent a very common respiratory infection that can be dangerous for kids like Ellis). It's hard to watch him go through all those "pokes", but he is so strong and brave and recovers so quickly, it all seems worth it so he doesn't get sick with something this winter.

This week we are looking at some major appointments with our other docs. Tomorrow (Wednesday) is our neurological assessment at Gillette's in St. Paul. She last saw us 8 weeks ago and is going to just be amazed at all the progress Ellis has made. Our therapists have put together reports for our doctor to peruse and it was so fun to see their notes from sessions in August as compared to now. Not only has he gained innumerable skills, his strength and stamina have also improved greatly.

On Thursday, then, we go to the U to see our cardiologist. We will probably have some blood work done, too, just to check in and make sure everything looks ok. We will talk about the next steps then in who/when/how to re-evaluate him for the transplant list, as that is still what he really needs for long-term survival.

We will continue to update all of you as we know how many of you are anxiously awaiting news of his medical direction - AS ARE WE!!! It is so difficult to not know what to hope for... Last night I shed a few tears of frustration and fear while holding a napping Ellis in my arms. But I was quickly comforted and brought to laughter by 2 small fingers poking up my nose! So much for my self-pity session!!!

Ellis is doing a ton of babbling now. Especially to Dakota and MIRRORS - any mirror. Ellis has officially realized he's as cute as everyone has said...

Anyway, lots of love to all of you and any news we get we'll share with you as soon as we can! Thanks for sticking with us!

Melissa, Sam, and Ellis

Friday, September 24, 2004 11:15 PM CDT

Ellis Joshua Bergstrom is SIX MONTHS OLD!!!

(Well, almost...in about 45 minutes or so...close enough.)

Please check out the photo album with pictures of our family birthday dinner (rice cereal, of course, but with hats!)...and the newborn picture taken of Ellis when he was just an hour old or so. Amazing how much can happen in half a year, isn't it?

Not much new on this end of the universe besides the calendar milestone. We're still doing therapies couple of times a week: physical, occupational, and massage. Also seeing a speech therapist occasionally to check in with bottling and babbling. Nothing going on in the bottling area - but he'll take anything from a spoon. Wait, I take that back. We tried peaches last night, and woah nelly - the kid first gagged then had a few dramatic "diva" coughs to express his disgust and then proceeded to spit out whatever remained and let it ever so slowly dribble down his chin. Ok...so who was it that said this kid wasn't going to communicate? Ha!

Dakota and Ellis have started to acknowledge each other and it seems the two are cautiously optimistic about their future together. :) Dakota will gently rest her head on the couch or our laps or wherever Ellis is hanging out and Ellis will reach out and pet her, play with her hair, even venture by the eyes and mouth a bit and Dakota just sits there. Ellis also likes to watch Dakota chase her tail in circles (and flip it jump-rope style over her back while holding it with her mouth - stupid pet tricks here we come!). They do have one thing in common - neither are too fond of the party hats. Sigh...what's a mom with a camera to do? (oh, yes, distract them with food!)

There's been a cold passed around the Bergstrom house the last week...Ellis probably had the least amount of symptoms of all of us - amazingly enough! Maybe he has more reserve immune strength than we thought. Sam's got it now, and he's pretty miserable - partly because of the congestion and partly because he's trying to keep his distance from Ellis in case it is a new bug. So far Ellis just had a few sniffles for a couple of days, and none the worse for wear! But it is a reminder to us that cold and flu season is almost upon us and we'll have to take extra precautions to keep him healthy.

We're using the "big-boy" highchair now for meals at the kitchen table as a family and it's a bit chaotic, but joyfully so. Ellis is very particular about the consistency, temperature, and frequency of rice cereal spoonfulls that must be offered or we hear about it! Ah, the luxury of normalcy...

So to all you Ellis fans, THANK YOU for your thoughts, prayers, support, meals, cards, well-wishes, EVERYTHING you have done for us and him to get us to this point with smiles on our faces (and on yours, I hope!). We are so grateful for this time and for knowing the vastness of our extended family...if you could type a hug, it would go here: ______ Consider yourself hugged!

Love,
Melissa, Sam, and Ellis

Thursday, September 16, 2004 2:15 PM CDT

Hi, everybody!

Finally, another journal update...sorry! I tried Tuesday night and Wednesday a couple of times, but this kid is very high-maintenance! Grandma Kay is here now and I can get a few seconds to write to y'all about E-man, the champ.

We had some fabulous strides forward in therapy this week including some pretty strong rolling skills, especially to get OFF his tummy. But the tummy time is becoming a bit more manageable, too. He loves to sit up and look around the room and watch Dakota chase her tail or catch a glimpse of The Simpsons with Dad. D'oh!

Just when we thought we had enough appointments, we've added another! Ellis is now getting the spa treatment twice a week for infant massage. Couple of goals with this new addition to our routine: 1) added stimulation to his muscles to inspire growth and development; and 2) to give him some "good touch" to balance out all the other stuff he has endured. At our first appointment, he definitely communicated where his comfort level is...the foot rub was delightful! He uncurled himself from my arms a bit and looked at the therapist and smiled and relaxed all over. But when she started to touch his torso -chest, tummy, back - he arched and fussed and shut his eyes and tried to curl back in and bury himself back in my chest. Our massage therapist said she can really sense the "chaos" that is present in this area of his body - that's where all the invasive stuff has been done - and that's where we'll work to try to restore some trust, promote healing and give some peace to his body.

Amazing how much little ones know and "ponder in their hearts," isn't it?

Anyway, Ellis is batting around on his toys on his play yard and grabbing my glasses off my face and eating up to SEVEN servings of rice cereal in a single day!

The echo last week actually showed a little bit of improvement in the function of his right ventricle (the part of his heart that is now doing all the work)...so he's getting stronger! Next heart-doctor appointment isn't till October...October will be the month where we find out more about the big-picture plan for Ellis.

Till then, we'll continue having a fabulous time with rice cereal, massage, therapy, walks, naps, and Simpsons! Life is good!

Love,
Melissa, Sam, and Ellis

Tuesday, September 7, 2004 8:20 PM CDT

Greetings, fellow Ellis fans!

As you can see by the joyful pics, we are just having the best of times these days. It has been almost 2 months since we were discharged from the hospital and Ellis has never been more stable and healthy!!! Amazing...

Remember that stinky nasal canula with its supplemental oxygen supply we were on??? Now we have none - for the last couple of weeks! In fact, the more therapy exercising he does, the better his color and "oxygen saturation" rates.

So our last tube is that darn feeding tube. We're working on it, though. He's chowing down on the rice cereal and we're going to check with the docs this week to see how much we can back off on the night-time tube feeds and let him get a little hungrier - see what he can really do! Then we'll just have to figure out how to get meds down...but I'm sure we can disguise them with applesauce or something!

Therapy is going very well...he's learning new skills like rolling from his side to his back and reaching out for toys and grasping toys with both hands at the same time. Tummy time is still pretty effort-full but we've had some visible progress in stamina.

On Thursday of this week, Ellis will have another echocardiogram to look at the function of the different parts of his heart and see how those pulmonary bands are keeping up. This will give us some information for his transplant re-evaluation, too, as there are some definite physiological prerequisites for doing well in that kind of surgery. We'll keep you posted as to what we find out.

We've had some fun-filled family outings, too. Sam and I are getting a bit braver with the little guy, while still trying to avoid kids, enclosed spaces, and germs. Ellis went to his first outdoor music festival on Labor Day - the Bluegrass Festival at Minnehaha Falls. He donned his denim overalls and white t-shirt for the occasion and loved to dance with Mom under the shady trees to the banjos, mandolins, fiddles, and catchy vocals. We stayed on the perimeter as much as we could and really had a great time!

Thanks for tuning in to the Ellis-cam!

Love,
Melissa, Sam, and Ellis

Tuesday, August 31, 2004 8:02 PM CDT

Hi, all!

The word of the week is THERAPY. Our last journal expressed how busy we were becoming with all of the appointments. Well, after someone discovered how soon we actually need to re-evaluate Ellis for the transplant list (if possible), they scheduled us for both physical therapy and occupational therapy appointments EVERY DAY!! They want to see Ellis make as much improvement as humanly possible over the next several weeks...it's pretty exhausting for him, but we can see progress already.

We are still learning the differences between the different therapies and their purpose. Physical therapy mainly deals with large (gross) motor skills, such as head/neck strength, legs, etc. Occupational therapy deals with more fine motor skills such as grasping toys, finger movement, etc. Speech therapy would obviously work on speaking (if Ellis wasn't 5 months), but in Ellis' case it works on making baby sounds, identifying those speaking and responding in some way to those sounds. Speech therapy will also help with taking a bottle, with which Ellis has some issues.

However, Ellis does like RICE CEREAL, BABY!!! In fact, he's taking enough calories with our formula/rice cereal concoction that we don't have to tube feed him during the day (just a slow drip over night to maximize his calories). What a kid...the bottle was just too infantile for him, he proceeded directly to bowl 'n' spoon.

Anyway, fun, fun, fun in the Bergstrom household...tummy time, play, eat, sleep, walk...tummy time, play, eat, sleep, walk...hope all your fall schedules are as thrilling as ours!!!

Love,
Melissa, Sam, and Ellis

Saturday, August 21, 2004 5:08 PM CDT

Hello Everyone:

Things are going well here in Ellisville. Ellis' physical therapy seems to be helping his overall strength. As you can see in the picture, his neck strength is improving and he is starting to hold up his head a little. Ellis did however score fairly low on the therapist's evaluation a couple weeks ago. We are doing a lot of exercises at home and hoping to get Ellis caught up. It is expected that Ellis would be behind his age since he spent the first 4 months of his life in the hospital.

Ellis recently had his first speech therapy appointment and evaluation. The good news is that he seems to be right on track in most areas and we are working on the others.

Next week we have our occupational therapy evaluation. Ellis already had one appointment but he really didn't have the patience for a 90 minute evaluation. I honestly don't know that we would have the pateince for that either.

Things are becoming a bit overwhelming in terms of the physical, occupational, and speech therapy appointments and our responsibilty at home with Ellis (different exercises and activities). Everything is so interesting and we are learning a lot in terms of an infant's development in these areas.

Ellis is definitely keeping us busy from the many appointments to the 6 mile walks around the lake, but we are loving every minute. We'll keep you posted on Ellis' progress in all of these areas. Thanks for all the messages.

Sam, Melissa, and Ellis

Wednesday, August 11, 2004 10:55 PM CDT

Hi, Ellis fans!

Another joy-filled week here in Ellisville and Sam and I are still in awe over this whole new reality we find ourselves in. Amazing...

Ellis' new-found joys this week include:

Bath time!!! He loves hanging out in the suds with mom, floating and splashing. (NOT in the baby tub by himself - this kid is definitely no longer minimal stimulation, he wants to be held and talked to and smiled at and sung to and...well, you get the idea!)

Applesauce!!! Ok, it's not his favorite, but he's taken a few little tastes of some quasi-solid food. He's a little unsure, generally speaking, but it's better than the bottle (to which he has formed a VERY strong aversion, so he receives all his nutrition these days from his feeding tube). So, we make messes and all get a little stickier, but he is definitely having some new sensory experiences.

Neurology!!! Last Wednesday we visited a new neurologist at a different hospital here in the cities to get a fresh perspective and some guidance on Ellis' current status, prognosis and any help in the transplant/neurological conundrum. Here’s the long version:

As you may recall, Ellis had a head MRI done at the U in late May which showed bleeding throughout the brain, excess fluid around the brain, and general atrophy of brain tissue. There was also grave concern about the complete lack of head growth which is a crucial sign of development for infants during the first months of life. These findings led the neurology team to paint a future for Ellis of severe to moderate cerebral palsy and severe to moderate mental retardation - specifically, not moving arms and legs, not communicating, not learning new skills, no short-term memory ability, and definitely not able to be an active participant in his life-long care - a requisite for being considered for a heart transplant. Because of the critical shortage of organs available and the many children waiting desperately for them, they have to make very conservative decisions on how these organs will be best used and most honor the donor and the donor's family.

However, the neurology team at the U conceded that Ellis' clinical picture (that is, how he REALLY acts) did not match the MRI results at all. He is very physically active (though delayed due to poor health, poor nutrition, and general weakness), he makes eye contact and visually tracks objects and people, he is engaged with people and DEFINITELY communicates with his face and voice his needs. But everyone seemed to think that Ellis the-seemingly-appropriate-4-month-old, might not grow up to have much more skills than what he had already acheived.

Meanwhile, there were other factors keeping us off the transplant list that loomed as well - kidney failure, overall health and stability to get through another open-heart surgery - so the MRI just seemed one of many roadblocks in an overwhelming situation.

But Ellis got better. Amazingly better. And now we're home. Hanging out doing normal baby stuff. So we felt the need to revisit this whole thing. And we found this incredible neurologist at Gillette Children's Hospital who heard our story and managed to fit us into her schedule in a week when she's booked out for months. She read the MRI report and the history from the U and examined Ellis. She said she didn't want to give us false hope, but she did have a MUCH more positive prognosis for Ellis. She thought some of the MRI results were more benign than first interpreted and that the lack of head growth was pretty typical for a kid who hadn't grown anywhere else.

So…here’s the plan: 6 weeks of intense physical, occupational, and speech therapies to see how much we can “catch up”. We’ll have weekly appointments for these, as well as lots of stuff Sam and I can do at home with Ellis. We’re also going to feed him maximum calories to see if we can get him to keep growing – he’s over 10 lbs now! Then we’ll see the neurologist again and she will evaluate his progress. Depending on lots of factors – most importantly, his general health, our biggest fear would be an infection (cold, flu, etc) of any kind, Ellis will possibly be presented to the transplant team again in October with all of this information in hand (as well as general health status, kidney status, pulmonary pressures, heart function, and probably many other variables we don’t even know about).

Whew. Our heads are spinning, too, as I’m sure yours are. We’re not even sure what to hope for anymore – it keeps changing!

What we know for sure is that Ellis is here today – he’s as healthy as he’s ever been, he’s thriving and growing and living and experiencing JOY each and every day. And for that we are eternally thankful…each day we have the privilege to spend with Ellis is an absolute gift.

Thanks for sharing this gift with us.

Melissa, Sam, and Ellis

Tuesday, August 3, 2004 11:48 AM CDT

Hi, faithful Ellis fans!

Sorry it has been a while since our last journal entry...we're having too much fun hanging out with E-man.

Let's see...

Ellis turned 4-months-old last week and we threw a little birthday party (yes - with hats, sorry Dan!). He got a new swing in which he promptly spit up, but he seems to have gotten the hang of it now.

Our doctors appointments have gone well - nothing new (to the surprise of all - he's the most stable and healthy he's ever been). We always stop in to see the nurses on 5C and everyone is so excited to see him chubby and pink and smiling like crazy! We even met our "normal-baby" pediatrician and talked about "normal-baby" stuff.

Ellis - Mr. Minimal Stimulation - has gotten addicted to being held (with the requisite bum-patting), stroller rides, and car rides. As long as he's doing one of those three things, he's a happy camper. Sam and I have walked with the stroller until we're exhausted - we're putting many miles on that thing!

Things are going so well, in fact, that Sam decided it was ok to be gone for a week! He was asked to be one of the clinicians that work with the Minnesota All-State Jazz Band this week in St. Cloud - he'll coach the rhythm section. So he's not that far away, but he checks in by phone a couple of times a day. Ellis and I miss him, but we're enjoying our bonding time together.

We're going to see a new neurologist tomorrow who comes highly recommended. Hopefully she'll have some more information for us and a plan of action as far as continuing to assess and re-assess Ellis' status. He is so far beyond what they ever described for us - though it is hard to evaluate infants - and his pediatrician said he's actually not much behind other 4-month-olds from a developmental standpoint. His physical stamina and activity level, especially in his legs, is still weak but seems to be improving ever so slightly. Anyway, we'll continue to search for answers and we'll let you know what we find.

WARNING: PREACHING AHEAD! I hope you all saw the coverage of the Transplant Games here in Mpls last week - what bright faces on those kids and adults who have received the gift of life!!! And I hope you are all thinking about and talking with your families about being organ donors, too. So much heartache because there are never enough donors for all who need them - communicate your wishes! Be a part of the ultimate recycling program!!! And why don't you talk about it with them over a few pints of blood at your local red cross??? Ellis used so many blood products - all stamped with "volunteer donor" on the bag. Thank you for all of you who do this great service!

Ok, I'm off my soapbox now...thanks for putting up with my sermon. And thanks for following Ellis at home...we're having the time of our lives!

Love,
Melissa, Sam, and Ellis (who is nestled in my left arm as I type very slowly with one free hand - I think he actually rolled his eyes at me during the preaching paragraph - oh well)

Saturday, July 24, 2004 8:50 PM CDT

Hi, everyone!

One week at home and it feels fine...

We've shared a lot together these last few days -

-stroller rides around the block when it's not too hot, not too cold, not too buggy...ah, Minnesota.

-our first trip to the U for a doctors appointment with our cardiologist. All is fine and we'll see her next week, too.

-home nursing visiting us and checking in on Ellis' vital signs and weight: HE HAS REACHED 9 LBS!!! Growing and thriving.

-watching Ellis meet Dakota, our friendly golden retriever, and vice versa. They are respecting each other's space for now, not much to say to one another yet.

-Ellis has listened and watched us play our piano and guitar with what seemed like great interest. We'll keep you posted on his own performing career as it develops!

-Ellis had his first night at home with a babysitter!!! Friday night, our good friends Dan and Elizabeth got married (Sam was the best man) and we got brave. Well, it helped a bit that my sister, Sarah, had stayed with us a few days and knew the routine. Oh, yeah, and we had our cousin, Melanie, help out, too. Um...cuz...yeah, she's a pediatric intensive care nurse at Children's Hospital - how cool is that? Talk about easing our worries. Still, I think we called home about 8 or 9 times, but we did manage to enjoy an evening of celebration. So...THANKS, SARAH and MEL!

Anyway, check out some new pics in the photo album - the closest thing to a real-live "Ellis Cam" we can get. We'll be throwing Ellis a HAPPY FOUR MONTH BIRTHDAY PARTY tomorrow (Sunday)so we'll post pics from that soon, too.

Hope all your days have happiness, too.
Melissa, Sam, and Ellis

Saturday, July 17, 2004 5:25 PM CDT

Hi, everyone!

Well, the Bergstrom family is home together at last and it is beautiful. This is what we've been dreaming of since last summer when we first found out we were going to have a baby. Bath time, nap time in the rocker, middle-of-the-night comforting, it is all wonderful.

Of course, there are a few additions to the normal baby routine that we weren't dreaming of a year ago:

*his nasal canula and the 5-ft-tall oxygen tank in the dining room with plastic tubing that reaches all over the house;

*the feeding tube still in his nose and the requisite feeding pump and supplies;

*the monitor that keeps track of his heart rate and oxygen levels in his blood that we drag around the house with us;

*and the bergstrom pharmacy setup in our kitchen (syringes, med cups, bottles and bottles of meds).

So it isn't totally normal, but it is as close as we're gonna get and we are completely in love with our son all over again.

Our 2 biggest challenges right now are medications and nutrition. Ellis' meds are given at 8 am, 2 pm, and 8 pm. All in all, he gets 21 doses of meds per day. Each one is a different amount and has different directions: empty stomach, with food, refrigerate, don't refrigerate, etc. We've set up a charting system and have learned lots of tips from the nurses on how to stay organized at home.

The nutrition situation has its ups and downs. Ellis basically stopped taking milk from a bottle over this last week. We're not sure why, but it seemed like he developed some sort of pain when he would try to eat. The docs are considering reflux or some sort of esophagus inflammation (from the vent tube or feeding tube). Anyway, we're giving him some days off to let that heal and feeding him exclusively through his feeding tube (NG tube). He's eating breast milk with a calorie-fortifier-recipe from the hospital nutritionists. It's a bit complicated to prepare the milk and set up the feeding pump, but we're getting the hang of it.

Home nursing will come to our house 2x a week for the time being and do vital signs, weight, and just answer any questions we might have. We'll also go in for checkups with our cardiologist at the U - we have one Monday afternoon, in fact.

For now, we're trying to keep some rules that our doctors sent us home with: keep visitors to a minimum; no children visitors (too high risk of infection); no large group public appearances for now either. Hopefully soon they will relax those for us and we can go out on the town with our kid (and the portable oxygen tank, and the monitors, and the feeding pump - not to mention the diaper bag - good thing we got a minivan!).

Let us also say a big THANK YOU to everyone who brought meals, sent cards, financially supported us, mowed our lawn, and prayed and wept and hoped with us during these months. You made an unbearable situation bearable. While we realize that the long-term prognosis for Ellis is still grim, we are living with hope and celebrating each and every day we have with him. We appreciate all your support thus far and in the times we have yet to share.

We'll definitely keep updates coming on the website and pictures of Ellis and his adventures in Maple Grove.

Love,
Melissa, Sam, and Ellis

Saturday, July 17, 2004 5:25 PM CDT

Friday, July 16, 2004 2:46 PM CDT

Ladies and gentlemen...

ELLIS HAS LEFT THE BUILDING!!!

We were officially discharged at 1 p.m. CST this lovely Friday afternoon from Fairview University. After visiting the PICU to say goodbye to the wonderful nurses and doctors, we loaded Ellis up in his carseat in the minivan and drove home. He ate, took his 2 o'clock meds, and is now taking a very peaceful nap in our family room.

Sam and I are overwhelmed and will give you more details and more pictures when we get a bit more settled - just wanted to share the good news ASAP with all our wonderful friends and family!!!

With tears of joy and smiles all around,
Sam, Melissa, and Ellis

Saturday, July 10, 2004 11:15 PM CDT

Friends, Family, and Fans:

Ellis is officially out of the intensive care unit as of Friday! We were in the Intermediate Care Room on the ICU ward the last few days, but on Friday we made the giant leap to the Children's Center (general pediatric ward).

What this means for us is that Sam and I are now the primary caregivers for Ellis, rather than a nurse. He has his own room and the nurse comes in to do meds or check vitals once every couple of hours and that's it - otherwise it is Bergstrom family bonding time! The best part for Sam and I is that we are finally able to sleep in the room with Ellis and wake up with him when he fusses and be there to scoop him up and rock him back to sleep. What heaven...

This also means that obviously Ellis is doing fantastic. He is no longer on any IV meds (they'll probably take out his IV tomorrow or Monday), he is stable enough to be without constant medical supervision (though still on a few monitors), and he is needing less and less support from an oxygen standpoint and a tube-feeding standpoint.

People have actually mentioned the phrase "going home" without the usual addition of a wistful "someday." The nurses have even started scheduling Sam and I for some classes on giving Ellis meds through his feeding tube and other home health care issues. Amazing (and a bit scary!).

Ellis is now 8 1/2 pounds and 21 1/4 inches. Not much growth for 15 weeks, but we're proud of every last gram. He's still a monster on the bottle and enjoying having less and less tubes so we can hold him and burp him and tell him about all that eagerly awaits him at his home...we'll definitely update you as the week progresses.

With CELEBRATION and WONDER in our hearts,

Melissa, Sam, and Ellis

Thursday, July 8, 2004 3:36 PM CDT

Hello:

Well, its been a good week here so far. Ellis had a big morning today as they pulled the dialysis catheter. One less tube!! Although this wasn't a huge procedure, it was still an operation that made us a bit nervous. But Ellis did great and has been sleeping most of the day today.

He has also been a monster on the bottle. In fact the doctors decided to stop his feeding pump during the day so he can eat all by bottle. And during the night they will tube feed him and make up for any lost volume. Its pretty amazing how fast Ellis caught on to feeding after being intubated for so long. Feeding also takes an incredible amount of endurance for an infant, but Ellis seems to be holding his own. Hopefully Ellis can prove he is strong enough to feed completely by bottle soon.

Besides the feeding tube, Ellis just has one more line in his leg for meds we need to get rid of. All this line is being used for is some antibiotics to treat a possible infection (which hasn't really bothered him at all).

Perhaps the biggest news is that they moved us to another room, which is considered Intermediate Care, rather than Intensive Care. We are still in the Intensive Care Unit and have the same nurses, but we seem to need less attention. It will probably be a quiet weekend here in Ellisville and we'll keep you posted on the de-tubing.

Peace Out,
Sam, Melissa, and Ellis

Monday, July 5, 2004 11:07 PM CDT

Hello, friends and family!

Another exhausting and whirlwind ride on the Ellis-mobile:

On Saturday, Sam and I were told he would probably not make it through the day because of the increased stress on his heart from breathing on his own. So, thinking we were near the end, Sam and I said: no more CPAP (that ugly thing sticking in his nose that was supposed to help him breathe but seemed to just make him horribly uncomfortable - check out the photo album)...no more BDs/suctioning (where the respiratory therapists come every 4 hours and pound on his chest to loosen secretions and then suck them out of his nose and throat). No more. No more.

And he got better.

We will never understand all that Ellis has experienced. Our primary nurse, Janice, has told us that Ellis will tell us and show us what he wants in this life, that our decisions on his behalf will be guided by him. When she told us this, I didn't believe her. However, this weekend it seemed clear to us that he absolutely no longer wanted to tolerate invasive therapy. So we stopped it. We didn't know what that would mean for his life, but we knew he did not need to suffer through any more breathing tubes or aggressive suctioning treatments.

And he is better than ever.

Ellis and Sam and I went outside again on the fourth of July and saw flowers and felt the wind blow and heard birds sing. It was beautiful.

Today we stayed inside and learned how to eat. Ellis took over 1 ounce of breastmilk (over several feeding times) from a bottle today! He tasted food for the first time in his life, he coordinated his sucking/swallowing skills, and he loved it! His afternoon today consisted of: eating for 15 minutes, staring at us with much intensity, filling his diaper (thus the intense stares), taking a nice long nap, and starting over. Normal baby stuff!!!

We are treasuring each of these beautiful moments with our son. His spirit continues to amaze and inspire us.

Hope you are all enjoying the summer breeze and bird songs as much as we are.

Love,
Melissa, Sam, and Ellis

Saturday, July 3, 2004 7:17 PM CDT

Happy 4th of July Everyone:

The good news...Ellis is still off dialysis (2 weeks and counting!) and still off the vent (1 week and counting!). He has been a real trooper this week with all the breathing work he's had to take over.

Unfortunately, his heart is getting very tired. The doctors have been watching some heart-function numbers go down pretty steadily over the week and have had to add some meds to keep us off the ventilator this long. He's been running a fever, though, and we're actually hoping its from an infection of sorts that can be treated rather than just from his poor heart function. The last 48 hours have been really tough and we're not sure where we are all headed at this point. The docs are going to continue to optimize his heart and lungs and strength to keep him off the vent and see if we can get him over this rough patch.

Ellis is in need of your prayers and thoughts for strength, hope, and hopefully some peaceful naps during this time.

Thanks.

Melissa, Sam, and Ellis

Sunday, June 27, 2004 9:24 PM CDT

Dear Ellis fans:

Another eventful week here in Ellisville...

First of all (drum roll, please):

THE DIALYSIS IS DONE!!! THE KIDNEYS ARE BACK!!!

That's right, ladies and gentlemen. Ellis has not needed dialysis since last Saturday (6/19) and he's peeing like a champ! Everyone here at the hospital is in love with this strong little guy and so are we. Wow.

Secondly (louder drum roll, please):

ELLIS IS OFF THE VENT NOW FOR 35 HOURS AND COUNTING!!!

That's right - is this kid amazing or what? - we extubated Saturday morning (6/26) at 10:30 a.m. and he's breathing like a champ! He's getting a little help with a machine called C-PAP that hooks up to his nose with some crazy headgear, but we've heard his beautiful voice again and it is music sent straight from heaven. It's still pretty touchy with this new venture - the docs and nurses are watching him very closely - but he's doing much better than our last two extubation attempts. We've had to add about 8 med pumps to help him through this difficult transition for his heart (breathing is a lot of work). Hopefully he can keep it up without getting too tired or stressed out. We've watched him learn the fine arts of using a pacifier, sucking on his own fingers, and drooling all over! Fun, fun, fun!

Sam and I are completely in awe of our son. He has amazed everyone he has met in his life thus far and continues to inspire us every day. We'll keep you posted...be sure to check out the fabulous photos of his chubby cheeks!

Melissa, Sam, and Ellis

Saturday, June 19, 2004 9:50 AM CDT

Hello Everyone:

Well, its been an eventful week. Here's a recap:

Last Saturday:
Ellis got to go outside!! His dialysis has been going well, so they were able to stop that for 4 hours, they put his 1 med pump (of food) in his little red wagon, and ventured out into the sunny outside. He wasn't sure what to think of all of this, but we think he liked the bumpy wagon ride the best. Ellis also graduated into a big boy's crib. Although its big enough to fit him and 9 of his closest buddies, he seems to like it.

Tuesday:
The kidney doctors decided to try dialysis 16 hours a day and stop it 8 hours a day. Ellis is also developing his musical taste. After Melissa found a kid's dance party tape and played the "Macarena" for Ellis, he spit up. I think he will stick with the classical guitar, Beatles, and Brubeck.

Wednesday:
The kidney doctors decided to try dialysis 12 hours day!

Thursday:
Those crazy kidney doctors have now decided to do dialysis only 8 hours a day (with 2 hour passes)!! This is a big step from a couple of weeks when they were doing 30 minute passes 24 hours a day.

Friday/Today:
The kidney doctors said that the dialysis is going so well that they could shut it off and Ellis should do fine. However, they decided not to go any further on this because they were going to extubate (take him off the vent)!! The doctors tried to extubate once before (May 15th), but he only tolerated this for 2 hours. So Ellis got extubated Friday at about 12:30 p.m. - everyone was ready with lots of support but he just looked around and tried out his new skill of sticking out his tongue at the docs. Though Ellis was doing fairly well for about 20 hours, they did need to reintubate this morning at 9 a.m. He was just working too hard and not getting the oxygenation he needed. The good news is that he did much better than last time and I guess we'll try again after he has more time to rest and get stronger.

Until next time, stay away from the "Macarena."

Sam, Melissa, and Ellis

Friday, June 11, 2004 9:40 PM CDT

Hello everyone:

Ellis has been very stable this past week. The set-backs earlier in the week have seemed to get back on track.

The infection seen in the dialysis fluid has been treated. They have actually started doing dialysis 20 hours a day rather than 24 hours. The problem with the lungs has been getting better as well. They started the pressure support trials again and we are back to 4 hour trials (about where we were before).

At one point we had a picture in the photos that displayed the many pumps Ellis had going (we think it was close to 20 once). These pumps had constant drips of many meds going at all times. If you look at the most recent photos, you might notice only 3 pumps!! 1 pump is for feeding, 1 pump is just to keep a IV line open, and the 3rd pump is for 2 scheduled IV meds he gets once a day! Ellis is no longer on any constant drip meds! It seems Ellis gets another annoying tube pulled every other day. This definitely makes it easier for us when we get to hold him.

I guess we still have some work to do as far as getting off the vent and dialysis, but we are moving in the right direction. We will continue to wean the dialysis and see how he does with the pressure support trials on the vent over the weekend. We will keep you posted on Ellis' progress over the next week. Thanks for checking in.

Sam, Melissa, and Ellis

Monday, June 7, 2004 7:03 PM CDT

Hi, friends and family!

The last week has seen some minor ups and downs with Ellis.

Ups:
We were cruising on "pressure support trials" - times where Ellis does all his breathing on his own (with the vent tube still in place). Ellis was up to 4 hour trials 4 times a day for 5 days in a row and doing great!

He was also doing fabulously from a kidney perspective - more urine output and some of the labs they look at (creatnin, BUN - for all you medical people) were normal for the first time in a long time. We were poised to start some trial times without dialysis as well.

Downs:
A few bumps this weekend, though, put further trials on hold for a few days: some fluid in his lungs and some infections in his dialysis fluid (from his abdomen). None of these have set us back in the whole scheme of things, they've just delayed plans weaning the vent and weaning the dialysis. Assuming both these things clear up with treatments, we might be back on track by mid-week. We've got antibiotics on board for the infections and Ellis is receiving some "BD" treatments (Bronchial Drainage) where respiratory therapists come and pound (gently) on his back and chest where the fluid has collected.

Back on track might mean a possible second attempt at "extubation" (removing the vent tube) sometime later this week or early next. We're hoping the yummy nutrition he's gotten the last couple of weeks has made him strong enough to breathe on his own - but we know he's been on the vent a long time and many kids fail more than once. So we'll see...and we'll keep you posted.

Ellis' new favorite activites include dressing up in cute little outfits, watching his mobile, and hanging out in a swinging chair thingamajig. We'll put up some pictures for you to enjoy soon. Sam informs me that guys don't wear "outfits" - but I don't think Ellis minds that term yet.

One more thing - Ellis wants to wish Grandpa George and Grandma Kay a happy 30th wedding anniversary tomorrow (June 8th)!!!

Love,
Melissa, Sam, and Ellis

Monday, May 31, 2004 7:04 PM CDT

Hello friends and family:

Well, its been a while since we've written a journal. I guess it is difficult to know what to say.

Not much has changed since our last message in terms of Ellis' status and prognosis. We requested and received a "care conference" last friday with Ellis' medical team. 3 cardiologists, 1 surgeon, 2 PICU docs, 3 nurses, and 1 neurologist in the same room on a Friday afteroon of memorial day weekend - everyone was amazed at the number of people that felt it was important to be there. All of these wonderful doctors and nurses care so much for Ellis - they have been doing everything they can for him and are struggling with us and with you over the recent events. Together we went over the neurological diagnosis and confirmed that this would not allow him to be considered for a heart transplant, even though that is his only hope for long-term health.

While we have time with Ellis, we are continuing to try to improve his health and life as much as we can and some things in this area are going very well: no signs of any infections; his jaundice is gone (liver function normal); he is completely off iv nutrition and getting all his calories from breastmilk; and he is again making large leaps towards attempting to get off the ventilator. He is on minimal sedation, awake and alert, and in our arms as much as possible. In fact, his only discomfort (besides that nasty breathing tube) is a bad case of diaper rash!

There are still major concerns about his stability: he has had continued arrhythmias (though much milder and they don't affect his blood pressure) and his kidneys, having taken another hit last weekend, are being slow to come back again. It is hard to see him so peacefully sleeping in our arms or to look in his beautifully wise eyes and realize how very sick he is.

Thanks to all of you for your words, thoughts, prayers, and gestures (like the lawn-mowing angels on Orchid Lane!). We are comforted to know that we are surrounded and supported by all of you. We'll try to keep you posted on Ellis' life and all the wonderful times we're having with him, so you can share those with us, too. (Like his ADORABLE timberwolves outfit that he wears for game nights!!!)

Love,
Melissa, Sam, and Ellis

Saturday, May 22, 2004 4:30 PM CDT

Dearest friends and family:

It has been a rough weekend here in Ellisville.

Last night, Ellis had several episodes of arrhythmias - where his heart rate wouldn't keep steady and the pulses were not stable. The doctors had to work very quickly to correct these abnormal rhythms and use medicines to help him come back to a normal heart rate pattern. It was very frightening for all of us to see, though the medicines they used are working well and he is now having a stable day. It seems some lactate (lactic acid) suddenly built up in Ellis' blood and caused this event. Lactic acid, the doctors tell us, gets produced by your body when something - muscles, organs, tissue - is not getting enough oxygen. Unfortunately, they can't identify where the problem is yet, but the symptoms are under control with heart meds and with increased dialysis to remove some of these toxins. Sam and I sat with Ellis through the night and he was never scared or anything during these episodes - the nurses and doctors would help with sedation if he seemed distressed, but today he's back awake and alert as if nothing happened. We even got to hold him for several hours this afternoon.

We also need to let all of you know about some new developments in the plan for Ellis. Ellis had a MRI scan on Friday morning to try to clarify some neurological issues that have been raised. The neurologist spoke with us Friday night and again this morning about those results. Due to all of the stress Ellis' body has suffered for his 8+ weeks of life, his brain has suffered, too. There is evidence of bleeding, extra fluid, and most worrisome - a lack of developing brain tissue, basically his brain has stopped or has missed out on some major developments. While neurology cannot exactly predict what this might mean for Ellis, they have been able to say that he will most likely be unable to communicate for himself or use his arms and legs.

What this also means for Ellis is that he is no longer considered a viable candidate for a heart transplant. The damage he has will not allow him to ever be an active member in his own care down the road and thus the prospect of listing him becomes impossible.

We have always known that Ellis has been very gravely ill, but we have tried to keep hope for his future. This new information is shocking to us and, as it is for you, devastating.

Our realistic hopes for his future have changed from him living a long life to hoping that he can remain stable enough and even improve enough to go home some day for a few days, weeks, or months. For now, we will be with Ellis for as long as he will allow us that joy. And we will be closely working with the doctors and nurses here to make sure he is comfortable and that we are acting in his best interests at all times.

Your prayers and thoughts for us and for Ellis are much needed as we travel in this new direction with our son.

Love,
Melissa, Sam, and Ellis

Thursday, May 20, 2004 7:18 PM CDT

Hi!

Ellis has been hanging out these last couple of days fighting off some sort of infection. We can't figure out where/what it is, but he's had some fevers and high white-blood-cell counts that show us his body is trying to fight off something. So he's on some antibiotics and has had lots of tests to try and solve this mystery.

Meanwhile, his kidneys are still on the path to recovery - his urine output has been steadily climbing and they've cut down his dialysis time to 12 hours a day! Yahoo! His jaundice just keeps going away, too, so hopefully his liver and gallbladder are working better now. The feeding tube they've been working on placing this week isn't in the ideal location but it seems to be functioning well enough to start some small feedings of milk - yummy. Hopefully it will continue to work for us so we can get him fattened up a bit, he is too skinny.

Ellis turned 8 weeks old today and we sang happy birthday to him and thought about what these last 8 weeks have brought us and him. What an amazing amount of life experience you can see in those 8-week-old beautiful eyes!

More updates to come this weekend...thanks for your continued prayers!

Love,
Melissa, Sam, and Ellis

Tuesday, May 18, 2004 6:34 PM CDT

Hello friends and family:

After the extubation attempt Saturday, Ellis spent some time resting yesterday and today with little movement on another vent wean. The main concern has turned into nutrition. The doctors think Ellis is just too weak to handle another extubation attempt at this point and they are going to focus on getting some more feedings going. Since his stomach is sluggish and just hasn't been able to digest very well, they've been trying to put a "NJ" tube through his nose which then goes directly into the small intestine. This will still give him the nutrition he needs and may also help the stomach start working as well. Hopefully their attempt to place that tube today will work.

The dialysis has been going well and they have even limited the time from 24 hours a day to 16 hours a day. He has been peeing more, too. There has even been talk about getting him on the transplant list soon (if his improvement continues)!

So to recap: If dialysis continues to go well and weaned, he will be listed on the transplant list. Then they will continue feeds to get him stronger and work on getting off the vent. Then maybe we can start to get rid of the plethora of tubes coming out of this poor kid's body. Thanks for the thoughts and prayers.

Love,
Sam, Melissa, and Ellis

Saturday, May 15, 2004 7:43 PM CDT

Hello from Ellisville:

We had a quite eventful and exhausting day today. After many successful trial runs with the vent, they decided to take it away this afternoon. Yeah! Ellis was working really hard, though, and just couldn't quite do it by himself. Bummer. So they put the tube back in after about two hours of being on his own and he is now back on ventilator support. We are trying not to be too upset with this event, and we were reassured that this is actually common for children in Ellis' situation. Ellis just has to strengthen his breathing muscles a little more before next time. We may be in the position to try this all again in a week or so.

The exciting part about today is that we were able to see him without his vent tube and able to hear him cry for the first time. His crying was faint due to his raw throat and weakness, but it was so nice to hear him. (Check out the pictures of this momentus event in the photo album!)

Besides the vent issue, Ellis is doing well in other aspects: the liver is starting to return to normal function, he has been peeing a little more consistantly, he has been digesting more milk, and his heart is doing what it needs to be doing.

My theory about the vent is that Ellis, although not quite ready for extubation, wanted to give his mother a birthday present of seeing his mouth and hearing his voice. So he just gave her a sneak peak today and will give the rest of the present soon. What a good son. Anyway, thanks for all of your messages and we'll keep you posted on the vent wean.

Love,
Sam, Melissa (the birthday girl), and Ellis

Thursday, May 13, 2004 7:08 PM CDT

Hello y'all

We had some exciting progress with the vent today. All of the settings are at a level which would enable them to take away that support. They did a "trial run" today with the vent, which means they basically take away the breathing rate (for about an hour), so he is doing all the work himself. The first trial run went very well and they will continue these (becoming more frequent) over the next couple of days. We have heard the word extubation (getting off the vent) said to happen as early as Saturday, but more likely early next week! These trial runs may last a few days in order to strengthen Ellis' breathing muscles. We know everyone wants to see pictures of him without the tube in his mouth, so we will make sure we post some as soon as we are off the vent.

Ellis is still on dialysis, which is going well, and peeing a bit more. He is still not quite where he needs to be in order to get off the dialysis. This will be another momentus day when he is off this because that may very well get him on the transplant list!

The liver seems to be improving slightly and he is becoming less yellow. Yellow isn't really his color anyway. The feeding tube we mentioned before seems to be going well so far. However, it is early to tell for sure. This tube will bypass the stomach and go directly into the small intestine. Hopefully this will help get his stomach functioning too.

Well, are there any other vital organs to talk about? Oh yes, the heart. So far so good. We will keep you posted on the vent wean, the peeing, and the feeding. Until then, Peece out!

Sam, Melissa, and Ellis

Tuesday, May 11, 2004 10:23 PM CDT

Hello!

The last couple of days in Ellisville have been a good lesson in "two steps forward, one step back."

Here's the frustrating stuff: the kidneys are still not quite up to par, the stomach is not digesting much of anything, and now the liver is starting to act up a bit.

What that means for Ellis' kidneys is going back to full dialysis (we had weaned off a bit over the weekend) and delaying our ability to get listed for transplant yet. For the stomach, the doctors are going to try tomorrow to insert a different kind of feeding tube that bypasses the stomach and goes directly to the small intestine and see if that will help him digest milk. And for his liver we've added several new meds to help his crazy looking jaundice.

Phew.

Now for the good stuff: the heart is holding its own as much as it can and the ventilator wean is going very smoothly so far this week.

We've been able to wean off another heart med with no ill effects and switch another heart med over to an oral "going home" version. In addition, Ellis had been on a rate of 38 assisted breaths per minute from the ventilator and we've worked our way down to 12. The nurses tell us that other kids get their breathing tubes out when they get down to a rate of about 6 - so we're close!!!

Thanks for continuing to tune in for these fairly boring times in our life with Ellis - sometimes days like this can be hard, too, when things aren't worse necessarily, they just aren't getting better as fast as we would like. But he's working as hard as he can to get home and we know you're with him all the way!

Love,
Melissa, Sam, and Ellis

Sunday, May 9, 2004 8:40 PM CDT

Happy Mother's Day!

Ellis has been doing well these past couple of days. The doctors have been weaning the vent little by little and the two sedation meds he was on were replaced by two others, which will eventually be easier to wean. He has had trouble digesting milk, but it should be easier now that one of these particular sedation meds is done.

Ellis has also been peeing more! He still has a way to go, but we are hopeful his kidneys are moving in the right direction. Its amazing how connected the kidneys are with the respiratory system. The faster he can start peeing more and get off the dialysis, the sooner we are able to wean the vent (it has something to do with acidity levels). We even brought in some "water music" to inspire the process (thanks, Handel!).

It was also a nice mother's day present for Melissa to get to hold Ellis (the first time in 2 weeks). Melissa is hoping Ellis will be off dialysis and off the ventilator for her birthday present (May 15th). As we have seen Ellis' thoughtfulness in the past, we don't think he will disappoint. We will keep you posted to what the week brings (and don't forget to check out the new pictures in the photo album - he sure has a proud family!)...

Love,
Sam, Melissa, and Ellis

Friday, May 7, 2004 7:09 PM CDT

HOWDY, friends and family!

It has been the slowest of slow news days on Ellis Island...besides turning six weeks old yesterday, Ellis has been sleeping soundly and comfy these last couple of days.

We've seen an eensy-weensy bit more urine today than yesterday, so hopefully those kidneys are starting to go the turtle (slow-and-steady) route.

He's been getting daily visits from Becky and Heather (occupational therapy and physical therapy) who are massaging his hands and feet and working with his range of motion, reflexes, and other fun stuff - even teaching me how to help him with all that, too. It sure is fun feeling like I can help be part of the team taking care of my baby boy!

Speaking of the team, it is NURSES WEEK and Ellis would like to thank all the incredible men and women that have helped him these last weeks. It has been a wonder to get to know all the incredible people who work day and night with him and other really sick kids here in the pediatric intensive care - selfless, energetic, compassionate, and vital to his medical care. Ellis has 1-on-1 nursing care 24 hours a day here and Sam and I have been honored to witness the incredible work that nurses do. Not only their job-related duties, but their conversations with us, their smiles, their gentle touch with our fragile son - they have been amazing.

So...HAPPY NURSES WEEK EVERYBODY!!!

Love,
Melissa, Sam, and Ellis

Wednesday, May 5, 2004 7:13 PM CDT

Hello everyone!

Another fairly uneventful day in Ellisville...weaned a tiny little bit on the ventilator, weaned a tiny little bit off of one other heart med, weaned a bit off the dialysis, too! We did add one heart/kidney med that costs almost $800 a day!!! Ellis is getting the star treatment...

Remember that BNP test that detects heart distress? We had 1,700 a month ago (normal is less than 100)...ummm, well, we're now off the charts. Oops. We were hoping it would have come down a bit, but instead the computer analysis stops counting at 5,000 and we're beyond that somewhere. Yep. But here's the real deal: his heart is working well - stable blood pressures, good pulses everywhere, good color, etc. So, who cares what a lousy test says anyway, right? The doctors don't seem too worried, they just wanted to see where he was at and now they know. I think Ellis is blowing them away by being so stable and looking so fabulous even while he's battling this crazy heart stuff. What a kid!

He's been awake and alert the last couple of days so we can hang out with him and chat with him and play music for him. All the nurses and docs think he's so cute - they've named his bed "Ellis Island" and everyone has to stop in and say hi, even on their days off.

Thanks for all your continued support - we really appreciate knowing all of you are thinking of us.

Love,
Melissa, Sam, and Ellis

Tuesday, May 4, 2004 7:27 PM CDT

Greetings:

I guess the most exciting news today is that the doctors took away Ellis' Epi! This is a very potent heart med that he has been on since he was 2 days old. He has been awake and alert and stable for quite some time. They also took out 2 of the 3 chest tubes, which were used for draining fluid after the surgery, YUMMY.

One thing we are waiting on tonight is a BNP test. This is a test that shows levels of heart failure. For example, if some were to have a heart attack, their BNP level would be much higher. It is basically a hormone that is released when the heart is distressed. A normal person's BNP would be less than 100. Someone with "severe heart failure" might be at 300 +. Ellis had a BNP test on April 7th and blew everyone away with a whopping score of 1,700. Although we are not taking too much stock in this test (especially right after surgery), we hope his score might come down a bit.

Despite Ellis' BNP test scores being crazy, he has been able to pass all of his pre-transplant screening tests so far! Next, the psychologists are going to test Mom and Dad to see if we are fit to be parents of a transplant recipient. Mom has already started writing test answers on her hand. Speaking of Mom, she did pass something recently, the kidney stone! And speaking of kidneys, we can stop worrying about Mom's and focus our healing energy upon Ellis'. Go kidneys go. In conclusion, Ellis is doing well right now, but we need kidneys to work (and I'm not kidneying) (pun intended).

Love,
Sam, Melissa, and Ellis

Monday, May 3, 2004 7:04 PM CDT

Hello Everyone:

Today was a little more quiet than yesterday. Ellis did have some ups and downs (mostly downs) yesterday with unstable blood pressures, low oxygen saturation, etc. But today he is stable! Our main concern currently is his kidney failure. It is quite common for one's kidneys to shut down after a major blow to the body such as surgery. However, Ellis' kidneys and other organs will need to be functioning in order for him to be listed on the transplant waiting list. No one seems too worried about this aspect as of yet, just concerned.

We will definitely be hanging out in the ICU for a while yet. Even if they decide to let us go home before putting him on the list, we think we will be here for some time anxiously waiting Ellis to start peeing, get off the ventilator, off many of the heart medications, and feeding on his own (he's still on IV nutrition). It's hard to think how long this will take, mostly because we just don't know and neither do the docs.

Although we hope to have rapid recovery and progress, it is probably for the best to have a slow and steady pace. So if we have slow news days, stay tuned for the next exciting developments in Ellisville. Thanks again for all of your messages.

Love,
Sam, Melissa, and Ellis

Saturday, May 1, 2004 2:42 PM CDT

Greetings from Ellisville:

Ellis has had a good couple of days. Yesterday the doctors closed his chest from his previous surgery. Again, they were ready for increased meds and vent settings, but were glad to see Ellis handle it well. In fact, since the procedure, they took away one machine (Nitric Oxide) and weaned the vent to a lower setting! Although we still have a long ways to go on the weaning of the vent, this seems to be the next big goal.

It was also exciting to see Ellis wake up today for the first time in a week! They stopped the muscle relaxer that kept him paralyzed, so he is trying to wiggle around too. The wrath of SUPER ELLIS almost crushed my finger today! He is working really hard keeping his eyes open, in spite of being given sedation drugs. Ellis is so tough, they just can't keep him sedated. One nurse even told us that he briefly opened his eyes after the surgery last Wednesday in the operating room!!

We are still seeing that different doctors have different opinions on what to do in terms of putting Ellis on the transplant list for a heart. The surgeon seemed to think that after recovery, we should bring him home for a month or 2 to grow bigger and stronger, then put him on the list (which could then take an additional few months until an available heart). Another doctor thought we could list him soon. We like the idea of getting outta here for awhile. Anyway, we'll take it one step at a time. Meanwhile, we have met with the transplant team and started the necessary steps in this complex process. For now, we'll work on Ellis' recovery from surgery, continue his dialysis to get extra fluid off, and slowly wean the vent and meds. Thanks again for all of your messages.

Love,
Sam, Melissa, and Ellis

Thursday, April 29, 2004 6:50 PM CDT

Hello everyone:

We had a good and quiet day today! We have seen Ellis stay more stable today than he has before surgery (No Monitor Alarms!). They are planning on sewing Ellis' chest back up tomorrow. After the echo today, things seemed great (including the size of the bands on the arteries). It looks like this will leave a crazy scar. But I always thought that people with big scars have a good story to tell.

We are still working on getting those kidneys working again. This isn't an uncommon occurence, especially after such a big blow to the body. His chest x-rays look even better today, in terms of less fluid on the lungs! This element, however, may take up to a month to totally clear (though hopefully Ellis will be off the ventilator before then).

Although we are most likely still on the road to transplant, it sounds like after Ellis recovers from this surgery, we will be able to go home while we wait for a heart. We are just so pleased every time we talk to a doctor to witness their excitement about Ellis' strength and resiliance. He sure is a special little guy. We will continue to keep you posted on Ellis' recovery.

Love,
Sam, Melissa, and Ellis

Wednesday, April 28, 2004 2:56 PM CDT

Greetings friends and family:

I guess you are wondering how Ellis is doing. Before I get to that information, I thought I would mention what a beautiful day it is today. Okay, enough stalling...

Hallelujah - Ellis is doing great!! Surgery went better than the doctors expected!! The surgeon even mentioned how she wanted to do cartwheels afterward!!!!!

Ellis was a champ. Everyone is just blown away by how tough this little guy is. The doctors even think he needs a more masculine name like "Mad Dog."

He currently is sleeping (and will be for quite some time) and is being watched closely by the nurses and docs and his incredibly brilliant surgeon, Dr. Cynthia Harrington. They left his chest cavity open for swelling to go down and in case they need to tweek anything, such as the bands they put on the pulmonary arteries. He looks pretty crazy like this, but still as beautiful as ever. It sounds like they might close him up on Friday or Saturday and then they'll let him come out of sedation and we'll get to see his incredible eyes again.

Ellis' lungs are still pretty filled with fluid. However, the chest x-ray, which was done soon after surgery, looked significantly better than it had since he was born! Even the surgeon yelled a "woo-hoo" through the halls here in the ICU. We think his lungs will just need some time to clear up so we can start weaning the ventilator.

We are obviously incredibly amazed/delighted/overjoyed/ thrilled/thankful with these results and hope the upcoming recovery and procedures will go as smoothly. The next few days are definitely going to be stressful as we watch his recovery with the medical team. We aren't out of the woods yet, but we have definitely passed the scariest hurdle. We continue to enjoy reading all of your messages.

Love,
Sam, Melissa, and Ellis (a.k.a. Mad Dog)

Tuesday, April 27, 2004 3:45 PM CDT

Hello everyone:

Well, we have a lot of information, so listen up! First of all, yesterday the doctors decided to start Ellis on dialysis for his kidneys. Although he has been peeing a little, his kidneys aren't working too well yet. The dialysis seems to be helping with getting some of the fluid out. They would have waited, but Ellis was having trouble getting oxygen throughout his body, so they thought dialysis would help get some of the fluid out of the lungs (and its been working).

We also had some excitement with Melissa last night. She has been fighting a bladder infection for the past week and started having terrible pain. I took her down to the ER (good thing we were already at a hospital) and they discovered she has a kidney stone! Now I have never had a kidney stone, nor given birth (obviously), but from witnessing both events, the pain seemed to be on the same level. YIKES!! Needless to say, Melissa is on some happy happy medicine for the pain and we'll keep you updated on the stone passing. We decided not to give Melissa her own Caring Bridge Website, so we will just communicate through Ellis' page:)

Perhaps the biggest news of all is that Ellis is on the schedule for surgery tomorrow morning (Wednesday)! We were finally able to talk to the surgeon this afternoon and just got confirmation on the day not even 1/2 hour ago. We didn't even know what procedure they were going to perform for sure until today. The doctors do communicate well and we have all the confidence in their ability, there was just some debate amongst the cardiologist's team about what was best for Ellis. The solution looks like a 3-pronged approach where they will put a shunt in the ductus (to keep it open), which will let the right side of the heart do most of the work; put a hole in between the 2 atriums so to relieve high pressures in the left atrium; and to put bands on the pulmonary arteries to avoid fluid backup into the lungs. This particular procedure isn't a commonly performed one and is considered extremely high risk. This is also considered a bridge surgery. This means that they will let Ellis get better then list him for heart transplant.

As we approach this stressful and delicate time, we appreciate all of your thoughts, prayers, white light, positive energy, and whatever else you can send our way. Some of our friends and family have recently expressed an interest in coming to the hospital to show their support on this day. Although we appreciate this gesture, we are asking of the Ellis fans to refrain from visiting until things settle down. The few days after surgery will be just as stressful as the day itself and we will be at bedside every minute possible. We will try to update Ellis' progress some time tomorrow evening, but can't make too many promises. Thanks again for all of your support.

Love,
Sam, Melissa, and Ellis

Sunday, April 25, 2004 5:28 PM CDT

Happy one-month birthday to Ellis!!!

Ellis has been celebrating this day by being stable. His blood pressures have been good, his high temps have stopped, and he has even peed an eensy-weensy bit.

While we're definitely not out of the woods yet (in terms of the kidney function and the blood infection), a stable day is a good day and we'll take all of 'em we can get.

Ellis has Grandma Mary Gaye and Grandpa Ron here, Grandma Kay and Grandpa George on their way - as well as Auntie Sarah and Uncle Adam coming from Chicago, Uncle Josh from Aberdeen, and Auntie Heidi from the cities - are all arriving here at the hospital sometime tonight for another celebration: Ellis' baptism!

We'll post some pictures of his happy day for you all tomorrow - until then, thanks for your thoughts and messages.

Love,
Melissa, Sam, and Ellis

Saturday, April 24, 2004 7:29 PM CDT

Hello Everyone

We had a somewhat eventful day again (unfortunately). Ellis seemed to continue to struggle as he did yesterday. Perhaps the news we are worrying about most is his kidney function, or lack thereof. The doctors said Ellis' kidneys shut down last night about midnight. This means he is not peeing but retaining fluid. The doctors are hoping that his kidney function will regain some momentum within the next 24 hours. They said the turn-around usually takes longer in infants than it does in adults. If in fact Ellis' kidneys don't start working, we will discuss the possibility of dialysis.

There is a good possibility that all of these struggles are linked to a new infection, this time found in Ellis' blood. He is being treated with a few different antibiotics right now, which will hopefully help clear this up. The doctors have been bugging Ellis again today by taking out 2 other IV lines and adding a new one. Ellis has slept through most of the day though.

All of these new developments will put surgery up in the air. Although surgery is what Ellis needs right now, the infection and possibility of dialysis has the medical team concerned. All we can do right now is wait and hope Ellis can clear up the infection and start peeing. We will continue to keep all of you Ellis fans updated. Thanks again for all of your thoughts, prayers, and positive energy.

Love,
Sam, Melissa, and Ellis

Friday, April 23, 2004 7:44 PM CDT

Greetings everyone:)

Ellis had quite an eventful day today. After some issues with lowered blood pressure and low hemoglobin overnight, the doctors were changing IV lines, giving x-rays, ultrasounds, increasing and adding new meds, and generally just bugging the poor little guy. The goal is to keep Ellis stable until his surgery, which is sometime next week (we still don't know the day).

The doctors are having trouble explaining the little episode Ellis had last night with the lowered pressure. The doctors think it may be a technical issue (specifically a bad IV line) but they are keeping a close eye out for any infection brewing. They would be surprised if he did in fact have an infection (because he has no fever and he has good color). The other things the doctors checked for were a heart attack and internal bleeding, which have both been ruled out!

Now that the weekend has arrived, the hospital will seem fairly quiet. Unfortunately we will not know about the sugery schedule until Sunday night (at the earliest). We hope we will have a very quiet weekend and Ellis will remain very stable and rest up for the big day. We will keep you posted on the surgery as soon as we know more.

Love,
Sam, Melissa, and Ellis

Thursday, April 22, 2004 11:11 PM CDT

Hello, friends and family.

Ellis was a trooper through today's cardiac catheterization procedure. He even got 2 Snoopy bandaids for his trouble...

Unfortunately, the results of the procedure were not what we were all hoping for. Instead of the pressures in the left ventricle being better, they were actually a bit worse then when he was first born.

While this is extremely disappointing for Sam and I and for everyone caring for Ellis, it does give us a clear direction to take from here. His heart, the way it is functioning now, would not be able to support him enough to get off the ventilator and home. So, we are going ahead on the path to surgery and transplant.

Early next week (we'll keep you posted as things get scheduled) they will operate on Ellis to perform 3 adjustments to his heart: 1) creating a shunt that acts like a ductus for the right heart to be able to assist the left heart in pumping blood out to the body; 2) creating a hole between the 2 atriums so when the left atrium gets too full of blood, it can relieve some of its high pressures by flowing over to the right atrium; and 3) banding the pulmonary arteries so that any high-pressured blood does not flow back into the lungs.

These three adjustments will hopefully allow some of this high pressure in the lungs to be relieved enough so we can get him off the ventilator, possibly home, and stronger so we can get ready for a heart transplant.

However, the surgery itself will be extremely high-risk for Ellis because he is so sick and his heart and lungs have been through so much stress already.

He is doing well right now - very stable, alert, and ornery as usual! We will keep you updated as to the schedule for surgery and any further details. Thank you for all your support through this ordeal...we are still very much in need of your thoughts and prayers.

Love,
Melissa, Sam, and Ellis.

Wednesday, April 21, 2004 5:57 PM CDT

Hello everyone.

Ellis had another good day today. His blood gases, which measure how he is oxygenating, have seemed to get better every time! I think the best news yet was that his chest x-ray today looked much better than in days past! We could even tell the difference in looking at the x-rays, despite our lack of x-ray reading skills.

We also had a major change in plans today when the doctors decided to perform a diagnostic cardiac catheterization tomorrow (thursday) morning. From what I understand, the doctors will go up (well not them personally, but some medical instruments) through the upper leg artery all the way to the heart with a scope/camera to get a better idea what is actually happening. They want to measure the pressures of the left and right ventricles. Since the echocardiograms can only show so much, they are hoping to find that the left ventricle pressures have significantly lowered. The results of this procedure will give some indication of which of two paths we need to head. If things have improved and its looks like Ellis' heart can function well enough on its own, we'll give him the time and support he needs. If in fact it doesn't look like his heart can handle the task, we will need to not waste too much time and go down the other path to surgery. Obviously we are hoping for the first option! We have seen Ellis surprise the medical staff several times already, so what is one more surpise?

What I am basically saying is we should know much more tomorrow and could use your prayers, support and postive energy to be focused upon Ellis' left ventricle.

Sam, Melissa, and Ellis

Tuesday, April 20, 2004 7:00 PM CDT

Hi, faithful friends and family!

Today has brought us some itsy-bitsy signs of progress for Ellis. The ventilator is supporting Ellis by giving him a certain number of breaths per minute (at a certain pressure, with a certain amount of oxygen, and a certain volume). Mostly we just are concerned with the number of breaths per minute the ventilator gives him in terms of tracking his weaning progress.

To put things in perspective, he used to be receiving 30 or more breaths per minute (early last week), and when he was at his best last Wednesday before the infection he had gotten all the way down to 14 supported breaths per minute - the nurses said we were within a day of being off the vent. (Plus, Ellis has always breathed "above the vent," meaning that he continues to breathe on his own to supplement what the ventilator does - a very good sign of his strength and continual feisty attitude!)

Unfortunately, when the infection set in, we backpedalled to the vent giving him 26 breaths per minute - not all the way back to where we started, but close.

Today they've been able to wean him down to 20 supported breaths per minute and he's been handling it fabulously! (We've heard from the nurses that when we get down to 6-8 supported breaths per minute, that's usually the time they can pull the tube and he can try breathing on his own.)

So...Sam and I are very hopeful that this is just the beginning of a slow and steady path to recovery - what a beautiful road to be on!

We'll keep you posted on our baby steps - thanks for all your thoughts and messages and support...

Love,
Melissa, Sam, and Ellis

Monday, April 19, 2004 5:19 PM CDT

Hello everybody!

Yesterday (Sunday), Sam and I sat down and talked with one of the attending physicians and one of the pediatric cardiologists about Ellis and his future. In that conversation we were told that Ellis' only hope at survival was to undergo a very risky catheter procedure and an open-heart surgery - both of which, if successful, would only serve as bridge procedures, that is, would allow him to survive long enough to pursue a heart transplant in the near future. It seemed like all hope was lost for Ellis to recover on his own and avoid all of these very dangerous and incredibly life-changing (for all of us) operations.

We've received a moment of grace today from the cardiology team - they are willing to give Ellis one more chance at weaning off the ventilator on his own!!! Ellis does have another infection that has been discovered in the fluid in his lungs and they are thinking that this might have contributed to his sudden stop after all our progress last week. So, if we can successfully treat the infection (the antibiotics are flowing in right now) and give him another chance, we might still be able to take our little boy home with his heart in one piece!

Of course there is still the overwhelming possibility that he will not be able to do this on his own, and then we will need to proceed to these invasive procedures if he gets worse in the next few days or does not show signs of progress in the next week. If this is the case, we will go this route - knowing that we are in the best care here at the U with all the doctors and surgeons and nurses supporting us.

However, there is still a door that has not closed yet! Sam and I are very hopeful about Ellis' recovery from this latest infection and his strength to resume his previous progress. Please continue your prayers and thoughts - we so appreciate all your messages and support.

Love,
Melissa, Sam, and Ellis

"Lord, listen to your children praying.
Lord, send your Spirit in this place.
Lord, listen to your children praying.
Send us love, send us power, send us grace.
...A door's gonna swing open,
and the walls come a-tumbling down -
when the people of the Lord get down to pray!"
-Ken Medema

Saturday, April 17, 2004 11:38 AM CDT

Greetings from Ellisville.

Its has been a somewhat eventful last day or two. Here's the scoop:

Wednesday it seemed Ellis was doing so well weaning off the ventilator but we really backpedaled Thursday and basically ended up where we started Thursday night. The doctors had originally planned on giving Ellis another shot at it this weekend, but determined that his lungs are so filled with fluid and pressure that he just isn't going to be able to do it on his own. He needs some help from them to get off the vent, breathing on his own, and then home.

A couple of options were presented as possibilities, the least invasive and risky of which would be re-opening the ductus (that little hole in newborns' hearts that closes shortly after birth). The doctors felt that Ellis' heart might be able to use that little hole as a sort of high pressure release valve to assist getting that fluid out of the lungs. They can actually go in and put a shunt in the ductus to keep it open for as long as it would be helpful for him. But before that they just wanted to try it out and see if it would work. So the doctors decided to give Ellis the drug that kept the ductus open before. He went on the drug Friday morning and the ductus opened last night but unfortunately the blood flow through that hole went the wrong way and actually made Ellis a bit sicker than he was already so they shut off the drug this morning.

Well, we know now shunting the ductus open would not help Ellis so we are starting to look at our other options. What we are left with are some pretty involved procedures that will be happening fairly soon. On Monday the cardiologists and surgeons will meet and discuss Ellis and what they can do for him. Probably what they will plan is another catheterization procedure soon to at least get accurate readings of the pressures and blood flows in the different parts of the heart. This catheterization will allow them to plan for the open-heart surgery that Ellis will most likely have to undergo where they can make some adjustments to his heart and the way it works.

What is amazing is that the original problematic aortic valve is now functioning fabulously and the left ventricle is pumping normally. Unfortunately, the left ventricle is so scarred and thickened from the months of pumping against that narrow valve in utero that it can't relax enough between pumps to let in enough blood. That's what is causing all this backup of fluid and high pressures in the lungs and in the right side of the heart. And that's what we have to fix in order to get Ellis off the ventilator, home for a while to grow stronger and healthier so we can be ready for a heart transplant someday, if needed.

So...the roller coaster ride is not over and feels like we're about to take off on the wildest part yet. We will let you know on Monday what the plan/schedule looks like for the catheterization and the open heart surgery.

Until then, thank you for your continued prayers, thoughts, and support.

Love,
Melissa, Sam, and Ellis

Thursday, April 15, 2004 7:21 PM CDT

Hello all.

Ellis is still hanging tough (Melissa is a New Kids on the Block fan). Anyway, Ellis did take a step back last night and this morning after a few steps forward the past few days. We are finding that this is a pattern of sorts. After taking a few big steps as far as weaning the vent, Ellis finally hit a wall and needed the vent turned back up a bit. They are going to give Ellis some time with the current vent settings and then start weaning it again. No one seems too worried about the little setback. We think this is a common occurance among kids on ventilators. Before last night there was actually some talk about taking Ellis off the ventilator by the end of the day. Well, we all know that didn't work. However, Ellis did make several big steps toward this goal. Ellis is still closer today than he was a couple of days ago. No one still knows if we will need to have another heart catheterization or other procedure to relieve the high pressures and fluid. We should know a lot more after we give Ellis another shot at weaning the vent.

Ellis also had some excitement today when Smokey the Bear and a dozen state troopers paid him a visit. The state troopers made Melissa nervous at first, but then she was reassured that they are in fact not interested in her driving record. Smokey tried to teach Ellis not to play with matches, but he didn't seem too interested. We will try to have more information (hopefully all good) tomorrow. Until then, don't start any forest fires!

Sam, Melissa, and Ellis

Wednesday, April 14, 2004 6:51 PM CDT

Hello everyone!

Wednesday has proved to be another good day of progress here in Ellisville. We have gone down again on the Epi, we've started feeding him breast milk (through a tube), and we've made lots of steps forward on weaning the ventilator.

Since the chest x-ray hasn't improved much in the last 2-3 days, the doctors weren't expecting Ellis to be able to proceed with the vent wean this far...but we're getting used to Ellis surprising the team and "exceeding all medical expectations." Hopefully, though, we can get rid of some of that fluid soon and we can continue our road towards getting that stinky tube out and hear him cry! What a wonderful sound that will be - Sam and I can't wait.

As you can see by the new picture, Dad got a chance to hold him today - Ellis spent another 3 hours in our arms this afternoon and loved every minute of it! Dad and Ellis both fell asleep shortly after this picture was taken - they've had a long day. I had a chance to change his diaper today, but politely declined. My debut earlier this week was enough to last me for a few more days.

All good steps forward today...hopefully we can continue our slow and steady path tomorrow - we'll keep you all posted!

Love,
Melissa, Sam, and Ellis

Tuesday, April 13, 2004 7:47 PM CDT

Hello everybody.

Ellis had a pretty good day today. Mom was able to hold him for about 3 1/2 hours!! I know what you are thinking, "So what did dad get out of all of this?" Well, he got to change a diaper last night! I think we are going to have to renegotiate this relationship.

The doctors continued to wean the EPI so that is now half of what it originally was. They are even planning on feeding him (through a tube) a little milk tomorrow! They also weaned the ventilator rates a little more today. The chest x-ray, however, hasn't been getting a whole lot better. He isn't really getting worse, but the doctors are concerned because it isn't good for babies to be on the vent for too long. He seems to be making progress, but the doctors are concerned at this point that the progress needs to be happening a bit faster. Over the next few days the doctors will be continuing to wean the vent rates and watching him closely. They are hoping that he will tolerate the fluid on the lungs and the vent weaning, but are discussing other options if need be.

We will continue to give updates on Ellis' progress over the next few days and maybe "mama's magic milk" will be "popeye's spinach" and help Ellis bulk up. Thanks again for all of the messages, thoughts, and prayers.

Love,
Sam, Melissa, and Ellis

Monday, April 12, 2004 5:15 PM CDT

Hello from Ellisville.

It is another relatively quiet day here at the hospital, which is good. The doctors are still weaning Ellis off of diuretic and heart meds. We also realized that Ellis must be off all of the heart meds before he can get off of the ventilator. The main med we would like to see gone soon is the EPI (epinephrine?). As soon as this med is gone, Ellis will be able to be fed some milk. This would be good. The problem is that EPI is a very strong med that has to be slowly weaned.

Ellis' chest x-rays seem to get a little better every day in terms of fluid clearing up. His liver function also seems to be returning to normal (or as normal as he can get as a Bergstrom). They also recently gave him a head ultra-sound to make sure everything upstairs is normal. Melissa used her expert ultra-sound reading skills to determine that Ellis is a genius. We are excited to get Ellis off the ventilator soon so that we may hear him speak in complete sentences and beat his mother at chess.

As you can tell in one of Ellis' pictures, he still has many meds and monitors. It seems though that we are moving in the right direction and slowly taking away (or at least weaning the dosage) med by med. We'll continue to keep you posted on Ellis' progress and our new game, "Take Away That Med."

Love,
Sam, Melissa, and Ellis

Sunday, April 11, 2004 5:42 PM CDT

Happy Easter All

Ellis is having a good Easter so far. He has been peeing so much that the doctors had to cut way back on the diuretics. The nurses have also discovered (a couple of days ago) that Ellis sometimes likes laying on his stomach. The first time they did this Ellis wasn't sure what to think. It was also the first time we were able to see his back side. Although Ellis has managed to fill several diapers so far, we were unable to locate his butt! The nurses assured us that he has a butt, but he is so skinny it is hard to find. Anyway, we'll have to fatten him up so he can carry on his mother's tradition of mooning friends and family.

(i don't know what sam is talking about ... -m)

We are hoping that this week Ellis will continue tolerating being weaned from the ventilator as well as some of the meds. "Slow and Steady Wins the Race," continues to be his motto. We will keep you updated on his progress throughout the week.

Sam, Melissa (moon shine), and Ellis.
(again, i repeat, sam has gone insane and doesn't know what he's talking about... -m)

Saturday, April 10, 2004 5:23 PM CDT

Happy Saturday everyone.

Well, its the weekend (plus a holiday) and therefore pretty quiet here at the hospital. Ellisville has also been quiet today. The doctors are still slowly weaning meds and the ventilator. They have also added a new heart med today, which he could eventually "go home on" - which is always a fun phrase to hear!!

Ellis seems to be making progress on the fluid in his lungs. The chest x-rays have shown some signs of improvement. The way he is getting rid of the fluid is a result of 4 different diuretic meds. Yes, he is peeing out the fluid. Pee, pee, pee like the wind, Ellis!

Ellis would like to give a couple "shouts out" to his cousin Logan who is also spending easter in the hospital with some stomach problems. Ellis also wishes Great Grandma Thompson a happy 80th birthday! Wish we could be at your party.

We hope to have some pictures of Ellis' first easter tomorrow. Until then, have a hoppy easter!

Love,
Sam, Melissa, and Ellis

Friday, April 9, 2004 5:36 PM CDT

Hello everyone.

Ellis has had a much better day today. They think he is starting to get rid of some of the fluid in the lungs. There is, however, a staff infection in that fluid, but the doctors aren't too concerned about it at this time.

The cardiologists had another conference this morning where they dicussed Ellis. They seemed hopeful that he could still do fine on his own and decided not to put his name on the list to receieve a transplant quite yet. The goal for this next week is to try to wean Ellis off the ventilator. This would be good. They have also stopped one heart med and will soon wean him off another med. The doctors say that his heart is pumping fine, but in between the pumps the heart isn't relaxing enough to let blood in from the atriums. This is what causes the fluid backup into the lungs. A combination of weaning some of the heart meds, getting rid of the fluid in the lungs and trying to keep the heart rate on the low side will hopefully allow the heart to relax and let the blood from the atrium in better.

So the roller coaster continues...as quickly as things can go from rehab mode to bedside vigil mode, they can turn back again - and they have. Ellis seems to be able to get himself out of some pretty sticky medical situations so far and we hope that as we revisit the weaning process, he can continue to grow stronger and look towards getting the heck outta here!!!

Sam, Melissa, and Ellis

Thursday, April 8, 2004 6:36 PM CDT

Hello friends and family.

It's Ellis' 2-week birthday today!! For his birthday he got a new IV pole added to his gear (that makes 3 poles with about 15-20 pumps giving him different meds)...

Last night Ellis took a turn for the worse. He has been really struggling with the fluid on his lungs the last few days and it has been increasing. The backup pressure from the left heart that traces back to the lungs (thus the fluid) has now backed up even into the right heart, causing some damage and scarring to the right ventricle. This is sad news for us, because we were hoping the left side could keep up, not cause further heart damage. It still is possible, but the weaning of medications over the last 2 days showed us he's not quite ready for that yet.

So we have gone back to initial levels of all his meds and even added a few more. The doctors are being very aggressive these last 6 hours or so because he's been pretty sick today. It seems like they've begun to help a bit already, as he has stabilized and is breathing better already this evening.

Sorry to say we've left "rehab mode" and we're back in "bedside vigil mode" again. He is at risk now for lots of complications from this high backup pressure in his lungs and right heart - they've seen evidence of liver damage and are worried about internal bleeding.

But the good news is they still have hope that we can turn him around (which it seems like is starting already) and kind of start over with the weening process (a bit more slowly and hopefully steadier this time).

The docs are going to watch him pretty closely the next few days while we discuss the possibility of revisiting some surgical options - specifically, heart transplant.

Please keep Ellis in your prayers these next days as we wait and watch and hope with him for some recovery so we can take our little guy home some day.

Love,
Sam, Melissa, and Ellis.

Wednesday, April 7, 2004 5:18 PM CDT

Hello everyone.

Not much new today. The doctors are still trying to get rid of the fluid in Ellis' lungs. There is going to be a lengthy amount of time where the doctors are going to be experimenting with how to wean the meds and ventilator while keeping Ellis stable. I have tried to come up with an analogy to help explain this delicate balancing process.

Since you musicians out there may be a bit slower than everyone else, I've decided to use a sound gear analogy. Think of the health complications being a bad garage band that needs to be turned down (and eventually off). The doctors are running the sound/PA system, which is all of the meds. Before the doctors (sound engineers) turn the PA all the way down, they have to first establish the "perfect balance." The volume levels, EQ levels, monitor levels, effects have to be just right. If the doctors turn up one channel too much we may get feedback or a lack of balance. Therefore, the sound engineers may have to add effects to compensate for turning down some levels. Every sound configuration is different and must take patience and monitored experimentation.

I know this analogy is a bit strange, but at this point we really don't have much else to write about. But please don't let that stop you from checking in on all the progress. "Slow and steady wins the race," is Ellis' motto. Thanks again for all of your thoughts and messages, and we will continue to strive for the perfect mix.

Rock on!
Sam, Melissa, and Ellis.

Tuesday, April 6, 2004 5:10 PM CDT

Hello friends and family.

Ellis had a little excitment today. The concern lately has been the fluid backup showing in his lungs. Last night they tried giving him some nitric oxide, which should have relaxed his muscles and arteries allowing things to flow better. They were hoping that this might decrease the fluid in the lungs, but it actually had an opposite effect.

The other concern has been his oxygen and ventilator function. The ventilator tube has been leaking for some time and finally needed replacing today. The replacement tube will be more effective in getting Ellis the oxygen and won't leak like the previous tube. The chest xray this afternoon showed an increase in fluid in the lungs. However, we are hoping that the new ventilator tube along with some new meds will decrease this fluid some by tomorrow.

The good news is that we realized that we are no longer in the "bedside vigil mode," but "rehab mode." This may make the daily updates less exciting, but we still have a long road ahead. We continue to appreciate your messages - reading them has been included in our daily (and many times hourly) routine.

Love,
Sam, Melissa, and Ellis.

Monday, April 5, 2004 4:02 PM CDT

Greetings Everyone!

Ellis is still hanging in there strong. He was awake a little more today, which is always fun for us to see his beautiful eyes. His heart rate does tend to increase when he is awake and wiggling around, but it wasn't too high today.

The echo today reported that his ductus was basically closed. Although it may not be fully closed, he isn't really using it at all. The doctors said that his left ventricle is doing all the work on its own as far as pumping the blood through the valve and to the body.

The next step in getting Ellis off the ventilator is helping the left heart to keep up with the right heart so he can avoid fluid backup in the lungs. This may take a couple of days to solve before we can start weaning him off the ventilator and other meds.

I think Ellis may have said his first word today, "Daddy," but then the doctor informed me that it was probably a combination of the leaky ventilator tube and a gurgle. Nonetheless, Ellis continues to surprise and impress the masses with his progress. Thanks again for all of your support and we will continue to give updates on Ellis' progress.

Peace out!
Sam, Melissa, and Ellis

Sunday, April 4, 2004 12:16 AM CDT

Happy Day Light Savings Everyone.

Ellis has continued to thrive over these last days - calm, stable, and beautiful as ever... We even got brave enough to stay down the street at a hotel for the evening (sleeping horizontally rather than in a chair- what a concept). He actually seems to make most of his medical progress when we, too, give him his space! :)

Because...(drum roll)...we think the DUCTUS HAS CLOSED!!!!

Dr. Sam Bergstrom and the medical team have observed his vital signs throughout the night and this morning and every indication points toward a completely closed ductus with absolutely no ill effects or complications for little Ellis. The nurses and doctors were prepared for and expecting an event of sorts when this took place - lots of instability in his vitals, needing lots of medicines to support him through the shock to his system, but once again our son Ellis has surprised everyone here. He (and we) slept through the whole amazing process.

There will be an echo this afternoon to confirm Dr. Sam's observation, but it looks like we are on the road to home!!! The attending physician even talked with us today about starting the process of weaning Ellis off the ventilator this week sometime.

The joy on this end is so overwhelming - we hope you can all celebrate with us today! We knew this kid was special when he was born, but we did not realize he was "SUPER ELLIS" - exceeding all medical expectations, leaping over cardiological buildings in a single bound... Your prayers and messages and thoughts have been vital to his healing and to our sanity. Thank you all and please continue to hold us in your hearts as Ellis flies down the road to recovery.

Love,
Dr. Sam, Melissa, and SUPER ELLIS

Saturday, April 3, 2004 7:30 AM CST

It's another beautifully calm day in Ellisville and things continue to improve: more increased left ventricle function and the ductus has closed from 6 mm to about 2 mm.

Slow and steady wins the race!!!

Ellis continues to surprise his cardiology team with his progress - they were not expecting there to be much, if any, improvement these last few days. Must be all your positive thoughts and prayers - AMAZING POWER!

Probably this weekend the ductus will officially close and we will see how the left ventricle kicks into high gear. The doctors and nurses are prepared to support him through what will be a significant shock to his system when this does finally happen. Hopefully, all will be relatively smooth...

Ellis has a small leak in one of his ventilator tubes (very common, not a significant problem at all since he has been consistently breathing on his own above the rate of the machine). But this small leak sounds very much like a snore...and it gets more pronounced when he is relaxed and sleeping peacefully - so Sam and I are laughing at his old-man snoring habits!

Hope everyone has a good weekend - and we'll keep you posted on the ductus saga!

Love,
Sam, Melissa, and Ellis

Friday, April 2, 2004 10:27 AM CST

Greetings Ellis Fans!

We just had a good moment with the doctors about Ellis' progress. There was a cardiology conference about Ellis this morning involving all of his team. After looking at his echoes and other information, the team seems to think that the left ventricle has a good chance of functioning well enough to get him home some day. They even cancelled the tentative surgery scheduled for Monday!! Although we truly don't know anything for sure until the ductus has closed, we are all very hopeful (even his pediatric cardiologist had a big grin on her face when we talked to her this morning). Other than this news, the ductus is taking its sweet ol' time closing (which is just fine with us because everyday we seem to get a little more good news about his left ventricle's function). We will keep you posted on Ellis' closing ductus and left ventricle function. We really appreciate the overwhelming amount of support, prayers, messages, and thoughts in this challenging time. Until next message, keep cheering on the left ventricle!!

Sam, Melissa, and Ellis.

Thursday, April 1, 2004 9:40 AM CST

Happy Birthday to Ellis - one week old today!!! We'll be having a little birthday celebration tonight at 6:08 p.m. bedside...it sure has been one heck of a week! :)

The ductus is still open, though the last 24 hours have had a couple of dips and swings in different readings - showing that it is slowly closing. The doctors will do another echo this afternoon to track its progress - everything on its own time. Just like the turtles, slow and steady wins the race!

Ellis' personality is becoming more and more apparent to mom and dad and to the nurses. Besides his obvious strength, toughness, and perseverence, Ellis is a lot like his dad in many ways. He likes his space and he likes his quiet. Unlike other babies on the unit, Ellis prefers to lay as spread eagle as he can - arms and legs propped up on stuffed animals and taking up the whole space. No swaddling clothes for this guy! He also gets pretty ornery when the nurses or doctors have to do housekeeping duties for him - changing tubes or bedding or whatever. So they've put a sign above his bed that says "Minimal Stimulation" - Sam thinks that will be the name of Ellis' first rock band. :)

He was holding onto our fingers yesterday as tight as he could around the iv lines and sensors while staring at us with his beautiful eyes. He is so amazing.

We will update the website again today if there are any developments - if not, that means another uneventful day has passed in Ellisville and we like those, too!

Thanks for thinking of us and praying for us and for sending us messages - we love to hear from everyone and we are reading the messages to Ellis so he can hear all of your love, too!

Love,
Sam and Melissa and Ellis

Wednesday, March 31, 2004 6:53 AM CST

Late last night we finally were able to hold little Ellis for more than 15 seconds (about 1/2 hour)! The nurses are not sedating him as much either, so his beautiful eyes are open and looking around.

Today is a big day because they are starting a test. We thought we would try to explain this whole process in spite of our 8th grade biology degrees. Before a child is born, there is a small hole in the heart called the ductus. This helps the heart function in the womb, but closes shortly after the child is born. The doctors have been giving Ellis a drug, prostoglandin (we'll just call it PG for now), that has been keeping this hole open. By keeping the ductus open, the right ventricle can assist his left ventricle in getting oxygenated blood to the rest of the body. The test, which started today at 6:00am, involves taking Ellis off of the PG, letting the ductus close, and to see how the left ventricle takes over. Although the doctors may start seeing some changes within the first few hours, it may take up to a week for the ductus to close. We are really praying that the left ventricle will be able to carry its weight so that we may start the road to recovery. If the left ventricle isn't able to function well enough, we will have to move fast toward more surgeries.

With Ellis' echoes showing signs of improvement, we are optimistic that the left ventricle is going to do it!!! We will keep everyone posted to any developments that may occur today. Thanks again for all of your prayers and messages.

Tuesday, March 30, 2004 12:35 AM CST

Hi, everyone! Thank you all SOOO much for the awesome messages and prayers and songs and cheers for Ellis and his left ventricle - much appreciated...

Today is a GREAT day here at Ellis-ville. The doctor just let us know that there has been even MORE improvement since yesterday's echo. WOO-HOO!!!

We're playing music for him and talking to him and touching his little tiny feet while he rests up for tomorrow.

The plan is still to do a test-run tomorrow and see how things take off without all the meds. We'll keep a close watch with the doctors and nurses all day tomorrow to track his progress - and keep the website well-informed, for sure!

One of the nurses yesterday pointed out that the name Ellis is a combination of SamuEL and MeLISsa. Pretty cool, eh? We just thought it was a cool name... :)

Keep in touch and we will keep you all posted!

Love,
SamuEL, MeLISsa and ELLIS

Monday, March 29, 2004 7:16 PM CST

After today's echo, it sounds like Ellis' left ventricle is showing more function and strength. Now we are going to give it a trial run. Wednesday morning (most likely) the doctors will stop the medicine which is helping the left side of the heart function. This will tell us if Ellis has enough function in the left ventricle to start thinking about going home. If the test does not go well, we will start thinking about other surgical options. But for now, keep cheering on the left ventricle!!!!

We will also try to post more pictures tomorrow!

Monday, March 29, 2004 7:08 AM CST

Ellis had a stable and quiet sunday, which was what everyone wanted. Today Ellis will have another echocardiogram. Hopefully this will show some improvement with the left ventrical. Ellis is still getting some help from all the meds and ventilator so his heart doesn't have to work too hard right now. All of the staff here at the hospital has been beyond wonderful. Ellis is really enjoying all of the attention from the cute nurses.

Ellis would like to wish a happy 21st birthday to his uncle Josh. Maybe they will give him an extra shot of morphine to celebrate.

Thanks again for all of your thoughts, prayers and messages. It is encouraging to see all of you thinking of us.

Sunday, March 28, 2004 9:25 AM CST

Good morning! Ellis had a very QUIET evening - what a relief for the medical team and parents. He looks good today - pink color even in his tiny toes! His blood pressure and other vitals have been pretty stable, though the wonderful nurses and doctors are watching him every second and making adjustments to all the meds (so many tubes going into that little body!) as necessary. We had a big day yesterday so our goal for today is more quiet and recovery and stability.

We are thinking of all the church families that Ellis is connected to this morning by prayer and it is so comforting.

Thank you for visiting this web page and leaving us messages - we love to check in and see how many of you are thinking of us!

Saturday, March 27, 2004 5:23 PM CST

Ellis was a trooper this morning during the procedure to stabilize his heart. The amazing doctors here at the University did miracle work on his tiny little valve and got it to open up a bit.

Now we're just watching and waiting to see if the left ventricle of his heart can now catch up and start functioning again. If we can get that to happen in the next few days, we get to start thinking about taking him home to meet Dakota (our friendly golden retriever) in the next weeks or months. So...go, left ventricle, go go go!

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